Breast Cancer - the results of the Onchotype DX test and hormone therapy

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post talking about Appointments to decide about chemotherapy and radiation treatment

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

Onchotype DX Results

When I last posted an update I was waiting to hear about the results of the Onchotype DX test which is a genomic test, performed on a sample of my tumour, that determines whether chemotherapy will be beneficial in my case. 

I am absolutely thrilled to report that the test results showed that the benefit of chemotherapy would be less than 1% so it is not recommended for me!

My Onchotype DXtest results

What does this mean?

The Onchotype DX test looks at the genes in the tumour and how they influence the way the tumour grows and spreads. The test can also determine how likely it is that the tumour will respond to chemotherapy and how likely it is that the cancer will return. Most patients with early-stage breast cancer that isn't in the lymph nodes (like mine) will not benefit from chemotherapy, but some patients will. As I mentioned previously, I decided it was worth spending $5000 to find out whether I was in the minority that should have chemo, or could I avoid it?

The first result, reading from left to right above, is the Recurrence Score. Mine was 13, which is under 25 and therefore considered a low score. This means that there is only a small chance that the cancer will return and therefore chemotherapy is likely to be of little benefit. It is not definite that the cancer won't return, but very unlikely. 

The estimated likelihood of recurrence after 9 years is 4% (second result). However, that is assuming that I have 'AI or TAM', which are abbreviations for the oestrogen blocking medications 'Aromatase Inhibitors' and 'Tamoxifen'. This hormone therapy is considered essential in my case to reduce the chance of the cancer returning.

The third result gives the estimated benefit of chemotherapy, which is less than 1% in my case.

Underneath the main results is a table that shows the benefit of chemo, based on recurrence score for patients over and under 50 years old. Fortunately, my score of 13 shows a <1% benefit for patients above and below 50 years. For patients under 50 years, the benefit of chemo increases slightly to 1.6% with a recurrence score of 16, but the over 50 age group only benefits from chemo if they have a recurrence score above 25.

I can officially say that I don't need chemo. Hooray!

Hormone Therapy

So now I'm on to the next phase of treatment, which is hormone therapy or, more specifically, hormone blocking medication to stop the body producing oestrogen. The reason for this is that the type of cancer I have 'feeds' on oestrogen. There are various types of hormone therapy, the most well known being Tamoxifen, and the oncologist decides which is most suitable for each individual patient. In my case I'm having two different medications which I will have to take for five years. 

My oncologist wants me to take Exemestane (Aromasin), which is an oestrogen blocker recommended for patients who have been through menopause. I have not yet been through menopause, so I will have to take a second medication called Zoladex (Goserelin) which will put me into medically-induced menopause by stopping the ovaries from producing oestrogen. This one may not be necessary for the full five years if I go into actual menopause during that time. I think this can be determined by a blood test. The Zoladex is in the form of an injection, which I have to have monthly, so it's back to hospital for that.

On the day of the appointment for my first injection I had to go into the chemotherapy ward of the hospital. Under current guidelines, anyone entering the Oncology Department has to have a Rapid Antigen Test (RAT) for Covid beforehand as patients having chemo are likely to be immunocompromised, so at high risk of infection. This means arriving at the hospital an hour before the appointment to complete the RAT. Once in to Oncology, I was led past the patients receiving chemo. It was very quiet and calm in there. 

The Zoladex injection consists of a small pellet that is injected into the tummy. The needle is large, but I didn't look so I can't tell you how large! There was a bit of to-ing and fro-ing as the nurse tried to find a good place for the injection. The skin on my tummy is still pretty tight from the surgery, so that was a problem. Eventually she was able to pinch a bit at the side towards my hip. The process was a bit painful, but over very quickly. I was given some numbing cream to put on for next time.

I was also given my first box of Exemestane tablets which I have to take daily.

Both medications can have similar side effects, which are commonly the symptoms of menopause, but can also include joint and bone pain and osteoporosis, amongst other things. Due to the risk of osteoporosis I will need to go for bone density scans periodically throughout the treatment and may need bone infusions to prevent the bones from thinning. There is a really good website discussing hormone therapy and many other aspects of breast cancer here.

I have now been on the two hormone blocking medications for just under three weeks and so far I haven't noticed any side effects, apart from maybe some tiredness and mild muscle aches. I know that exercising really helps with the side effects and I have kept up the walking, as well as doing twice weekly sessions in the gym with an oncology physiotherapist. The gym sessions are fantastic and are covered under Medicare. I have a personalised programme to help me get back my range of movement after the surgery and also some weight-bearing exercises to help prevent osteoporosis. Alcohol can also exacerbate side effects, so I'm keeping that to a minimum.

So overall things are really good. I feel like I'm getting back to normal, albeit a new kind of normal, and that the worst of this is now behind me. I even went on a trip away, which I haven't done for a very, very long time, as my parents very kindly paid for a trip to Rottnest Island. Here I am with a friendly quokka!

Breast Cancer - appointments to decide about chemotherapy and radiation treatment

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post talking about healing from surgery and the pathology report

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

I had a couple of weeks' wait in between hearing from the breast surgeon that I would most likely need chemotherapy and radiation and the appointments with the oncologists. I was surprised to learn that the oncologists specialise in either medical oncology (chemotherapy and hormone therapy) or radiation oncology, not both, so I had to see two different oncologists on different days. 

In a nutshell, chemotherapy targets the whole body in case there are any cancer cells travelling around and radiotherapy targets a specific area, the breast in my case, to kill any cancer cells that may have been left behind after the surgery. Some breast tissue is always left behind as it looks the same as the underlying tissue, so it's impossible for the surgeon to remove it all. Sometimes chemo and radiation are used before surgery to shrink the tumours. It just depends on the individual case and what the specialists think is best. The purpose of both treatments is preventing the cancer coming back.

These books from the Cancer Council were a very good source of information

After I picked myself up from the shock of needing more treatment, I did what I always do and started reading about the treatments so I knew what to expect. My partner and I are both former research scientists, so we got technical and read some research papers in addition to the reputable breast cancer websites (eg BCNA, breastcancer.org). I kept asking my partner questions to get everything straight in my head. Luckily he has endless patience! I wrote down questions (lots of questions!) to ask at the appointments. I also decided I should get myself fit again so I was ready to face whatever was coming next. I got up early and went for walks, trying to go a bit further or faster each day. I also had some fun days out with the family.

Medical Oncology - Chemotherapy

On the day of the chemo appointment, my partner and I had to arrive 45 minutes early so we could do a Rapid Antigen Test (RAT). Western Australia is on Level 2 restrictions and nobody can enter the oncology ward if they are Covid positive. This is because chemotherapy lowers immunity making patients more susceptible to infection. The rules also stated that only essential carers were allowed in with patients, no other support people. We were questioned on our way in and I said (as confidently as I could muster) that I'd been told to bring someone. This seemed to work and we were both allowed in. I really think that a support person is essential in this kind of appointment where lots of information is given, so they can take notes and ask questions.

The oncologist was lovely and spent a long time making sure I understood everything. I was very grateful not to feel rushed. There was a lot to take in. I will try to explain it as clearly as possible. 

Initially she talked about the benefits versus the risks of chemotherapy in my particular case. She used an online tool by the NHS called Predict. The website asks for information about the patient, such as age and menopausal status and about their cancer, such as oestrogen status, HER2 status, tumour size etc. From there, the website makes a prediction based on the percentage of people with similar characteristics and similar cancer who are still alive after 5, 10 or 15 years with surgery only, surgery plus hormone therapy or surgery plus hormone therapy plus chemotherapy. 

PLEASE NOTE that this does not work for all types of breast cancer and the results should be discussed with your oncologist as the benefits and risks of chemotherapy need to be assessed by an expert.

Part of the NHS Predict online tool showing my data

In my case, the results showed that 10 years after surgery 76% of people with similar characteristics to me, who had surgery only, were still alive (in people without breast cancer 95% would still be alive after 10 years as 5% of people in this group die from other causes). If patients had hormone therapy in addition to surgery, the 10 year survival rate increased to 82% (a 6% increase) and if chemotherapy was added in as well, the survival rate increased a further 3% to 85%.

This means that hormone therapy provides a large benefit with a low risk. Hormone therapy has less side effects and a lower risk than chemotherapy. Hormone therapy is a definite for me. Adding in chemotherapy adds 3% to the chance of surviving to 10 years for people in my cohort. So the decision needed to be made whether the risks and side effects of chemotherapy are worth taking for an additional 3% chance of survival....

....how does anyone make a decision like that? How do I know if I'm in the 3% who will benefit from chemotherapy? I don't want chemo, but I'll have it if it means I won't be dead in 10 years. 

Fortunately there is another test that can predict the benefit of chemotherapy much more accurately. However, it can only be used in breast cancer patients who have early, invasive ductal or lobular cancer which is oestrogen receptor (ER) positive, HER2 negative and with a maximum of three lymph nodes positive. It also assumes the patient is going to have hormone therapy. I have early stage, invasive lobular, ER+ve, HER2-ve breast cancer with no lymph node involvement. I'm a candidate for the test!

The test is called the Onchotype DX and is done in a lab in the US. It is available for breast, prostate and colon cancer. This explanation is from the Exact Sciences website:

"Studies have shown that chemotherapy does not reduce recurrence risk in all breast cancer patients by the same amount. In fact, only a minority of patients with early-stage, node-negative breast cancer substantially benefits from chemotherapy whereas the vast majority of patients doesn’t benefit from it and can be spared this treatment and its related toxicities. Without the right genomic test, doctors can only estimate how likely a patient’s cancer is to return. By adding the information from a genomic test that is proven to predict chemotherapy benefit, your doctor can more precisely assess how likely a tumour is to respond to a treatment like chemotherapy."

The lab uses samples from the tumour (or biopsy) that has been removed, so there are no further tests for the patient.  The genes are analysed using genomic testing to provide information about the biology of the cancer. The result is given as a score, which enables the oncologist to tailor treatment and decide whether chemo is necessary. This is different to genetic testing, which can give information about a patient's likelihood of getting certain cancers. In summary, genomic testing determines the benefits of chemo and type of treatment necessary, genetic testing determines the risk of getting cancer. 

The Onchotype DX test costs AU$5000 for Australians and is not covered by Medicare. I believe that groups are lobbying the government to have it covered by Medicare, which would make sense given the enormous cost of providing chemotherapy. The test has been done on over a million people so far and causes treatment decisions to be changed in around 25% of people. This means that one quarter of people who have been recommended to have chemo, or not have chemo have the decision reversed after getting the test results. 

Next we talked about chemotherapy and what would be involved in my case. There are two possible regimes for me, both with similar side effects. One is called TC (docetaxel and cyclophosphamide), which would be four treatments, one every three weeks. The other is AC-T (doxorubicin hydrochloride [Adriamycin] and cyclophosphamide, followed by treatment with paclitaxel [Taxol]) which would be eight treatments, one every two weeks. The side effects include hair loss, nausea and vomiting, constipation or diarrhoea, nail changes, mouth ulcers, fatigue and altered taste. The risks include an increased chance of infection which would require going to the emergency room for an antibiotic infusion with any fever over 38C, nerve damage causing numbness and tingling, menopause, heart problems and a low 0.05% risk of cancer caused by the chemotherapy.

So, after all this discussion and getting answers to my long list of questions, I needed to make a decision. I could have gone away to think about it if I wanted. The oncologist said it was up to me what treatment I had. She said some people want to 'throw everything' at the cancer and have the chemo and some choose not to go ahead, even if it's recommended. I wanted to know whether chemo was recommended for me. The oncologist said that I'm borderline for needing chemo, but if she had to make a decision she would not recommend me having it. She said I was an ideal candidate for the Onchotype DX test. For me, that was the decision made. I would go ahead with the Onchotype DX as that should tell me with good accuracy whether I am in the small group that would benefit from chemo. If I am in that group, I'll have the chemo. If not, I can carry on with my life without worrying that I should have had it to stop the cancer returning. We decided that I would wait the four weeks for the test results before starting on hormone therapy.

Radiation Oncology

The following day I had my appointment to see whether I would need radiation treatment. I had decided that, after the encouraging news about hopefully not needing chemo, I would be sure to need radiotherapy.

I saw the registrar first. She took some information, had a look at my new breast and explained radiation treatment in quite a lot of detail. The treatment would target the chest wall and reconstructed breast in a square formation in order to kill any cancer cells that may remain after surgery. I would need a CT scan first so the oncologist could plan where exactly she needed to direct the radiation. I would then have three tiny tattoos placed on my chest, each about the size of a small mole, which would be used to line up the radiation machine perfectly each time. The treatment sessions would last around 30 minutes every weekday for five weeks (this varies by patient) and could be done at a time that suited me. They would involve lying on a bed with my arm raised while the machine delivered radiation exactly where needed. 

The radiation is the same as is used in x-rays, so treatment doesn't hurt and the patient does not become radioactive! There is no hair loss, but by about the third week, some skin irritation is likely in the treated area. Other side effects may include fatigue, tenderness, skin pigmentation and irritation/scarring of the lung and heart (since mine would be on the left side). The lung and heart effects are usually short-term, but scarring can remain that would show up on CT scans in the future. Radiation treatment is not like chemo and doesn't have a major effect on day-to-day life. Treatment would start straight away, or after chemo, if I need that, and the hormone therapy would start after the radiation treatment had finished. The results of the Onchotype DX test cannot predict whether a patient would benefit from radiation treatment.

I then saw the radiation oncologist. She was brilliant and explained everything very clearly. She said that radiation is routinely recommended if the tumour size is larger than 5cm. My largest tumour was 5.8cm. However, since my lymph nodes were cancer-free and and the margins were clear (the margin is the cancer-free layer of tissue around the tumour that is removed during surgery, its thickness can vary but is ideally about 1cm), she said I was a bit of a 'grey area' for needing radiotherapy. We had some more discussion and then she said that in her opinion, I would not benefit from radiotherapy, but that hormone therapy was 'non-negotiable'. She also recommended that I consider having genetic testing, given that I have had breast cancer and have a strong family history of bowel and pancreatic cancer. There is a likelihood that these three cancers are linked. Genetic testing would indicate whether I was at increased risk of any these cancers and, if so, I could take preventative action, for example having my other breast removed, increased bowel cancer screening etc.

I can hardly describe how I felt as I left the appointment. Did she really just say I didn't need radiation!? In two days, I'd gone from thinking I needed chemo and radiation and now I probably don't need either. I felt like I'd dodged two major bullets. I was elated. Maybe I should buy a lottery ticket!!

In other news

I am continuing to heal well. I am walking every day and have got back to the pace I was doing before surgery. My tummy skin is not quite as tight as it was, but there is still some swelling, tightness and hardness. My new breast is getting softer and the swelling looks like it’s gone down completely and it is looking more like the natural breast. I am really pleased with the outcome so far. I'm not in any pain, just occasional discomfort in certain positions or turning over in bed.

Last week I had a day at the Crown hotel pool as we had some vouchers (look out for the lunch deal if you are in Perth). For the first time in many years I wore a bikini in a public place! I had made it the day before using a pattern I’m trying out for a post surgical bra (the Waves and Wild Superstar Bra, which is similar to the Evoe bra recommended by some ladies who've had reconstructions). I am now allowed to stop wearing the compression bra, but the surgeon said not to wear bras with underwires. I still need to wear the abdominal binder but I have been in firm, high shapewear for the last couple of weeks, rather than the thick elastic binder. I've made myself a binder from stable ponte fabric to wear at night. Anyway, back to the bikini. I hadn’t worn one for so long as I was self conscious about my tummy. Now I have my new surgically enhanced flat tummy (!) I am confident to wear a bikini in public. The lovely new breast is obviously very important too. It was an unexpected bonus to find this new confidence at all, let alone so soon after my massive surgery and all the associated stress.

So next for me is more waiting. This time for the Onchotype DX results, which take four weeks. I’m crossing everything it’s good news. UPDATE: See the results here.

Breast Cancer - healing from surgery and the pathology report

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post talking about my stay in hospital

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

I am now just over four weeks post-surgery and things are going well. I have been able to see an improvement almost every day in the wound healing and the things I can do. When I came home from hospital I was only able to walk outside for about five minutes and that was very slowly. I have gradually increased my distance and my speed, making sure to listen to my body and not do too much. I am now walking up to 30 minutes at a time and I'm definitely getting closer to my old speed. As my pace increases, so does the tightness in my tummy, so I'm taking smaller steps than I used to. I'm very happy to be out and about again and I feel like I've turned a corner in healing since increasing my walking.

Out and about three weeks post-DIEP surgery. I only had the dog for the photo as any pulling on the lead is not good for healing.

I am able to lift my arms above my head now and have been encouraged to do a wider range of arm and shoulder exercises to help with movement and to reduce the chances of lymphoedema, which is arm swelling from having lymph nodes removed. That means I can wash my hair and hang out washing! I'm not allowed to lift anything more than 2kg though so I have to ask someone to bring the laundry basket in and out. Cooking simple things is getting easier too, although some things, like the 3L bottle of milk, are also too heavy. I've even done a little bit of sewing in short stints. Things are definitely looking up!

Sleeping is getting more comfortable. In the past few days I've stopped using the pillow under my knees and just have my normal pillow for my head. Stretching full length is uncomfortably tight in the tummy, but I can lie on my side (the non-reconstructed side) quite comfortably, or on my back with my knees bent. Being able to change position has helped relieve the back aches from always sleeping on my back initially.

Wound Healing

A week after leaving hospital I went back to have my dressings changed. The large dressings and plastic tape were removed from the scars and Fixamol tape was placed over the abdominal scar. No dressings were put on the breast or underarm scars. I was told to use an oil on the scars, including over the top of the porous Fixamol tape and massage the scars twice a day to help healing. I am using Bio Oil for that. After another week I was able to remove the Fixamol tape and didn't need more dressings. The twice daily massaging needs to be kept up for several months I think. Showering with the Fixamol tape in place was fine and after it was removed I had permission to go in a pool or the ocean.

To give an idea of the surgery, this 40 second video from Johns Hopkins University explains very clearly what I had done. 

The pictures below show how my abdominal wound is healing. It also shows the belly button, which I have received many comments on after my earlier post! As I mentioned, after the wedge-shaped piece of skin and fat is removed, the skin is stretched tightly together and stitched. A new hole is cut for the belly button and stitched around the original indent. 

After the surgery I noticed a mole directly above my belly button that I couldn't remember being there before. After checking my 'before surgery' photos I was quite amazed to see the same mole much higher up on my tummy (see arrows)! Fascinatingly I have seen photos of a lady with a stomach tattoo, who ended up with part of the tattoo on the skin that was transferred to her nipple area. I've heard of another lady who's appendix scar partially appeared on her breast. These things can apparently be 'corrected' during a second 'revision' surgery if they are a concern. Revision surgery can also fix puckering of the scars, can add nipples, do a breast lift on the natural breast etc.

You can see that the healing and swelling has improved a lot in just four weeks. The tummy area is still very hard and stretched. Pressing on it is like pressing on a drum. There is very little give. I tried on a close-fitting pair of zip-up pants and there was no way I could suck myself in to do them up, even though my tummy looks smaller than it did before the surgery. Clearly there is still plenty of swelling to go down. Since surgery I have lost 1.5kg. You can see on the side of my tummy (on the left in the photos) a faint curved line. This is a reaction to the drainage tubes that were taped to my skin during surgery. Initially they were red, blistered and itchy like a jellyfish sting. They have now faded, but I'm surprised at how long they are taking to disappear.

Another strange and unexpected result of the surgery is that, as well as the top part of the scar being pulled down, the lower part is pulled up, although to a lesser extent. This has meant that my hair line is now higher than previously!! Not such a desired outcome, but I guess some laser hair removal could be an option down the track. 

Overall, I am very pleased with the outcome so far. The reconstructed breast is getting softer and more comfortable. It is somewhat perkier than the other one, but with a bra on they look the same. I haven't taken anything for pain since being in hospital, which I find amazing considering the size of the scars and seriousness of the surgery. I came out of the shower this morning feeling quite pleased with my appearance and sought the opinion of my partner. After a quick appraisal he declared that my torso looked like a smiley face with googly eyes. Hmmm, not quite what I was hoping for!

Four weeks post surgery about to have a gentle dip in the ocean (no swimming allowed). The new breast is my left one.

The Pathology Report

Last week, three and a half weeks after surgery, I had an appointment with the breast surgeon to receive the results of the pathology that had been done on the tumour and lymph nodes. I was very anxious prior to the appointment and had tried not to get my hopes up that chemo wouldn't be needed after having only two lymph nodes removed.

There was good news and bad news. The good news was that the tumour had been completely removed and there was no cancer found in the lymph nodes or the blood vessels, meaning that there was no evidence of the cancer spreading.  The not so good news was that the cancer was large. It consisted of a cluster of tumours, too many to count, spanning an area 9cm across. The largest of these tumours was 5.8cm. I was told that if a tumour is larger than 5cm, then radiotherapy is required. The surgeon said I would also need chemotherapy that would throw me into chemically-induced menopause which would be 'miserable'. Once the chemo and radiation are finished I will need hormone blocking therapy for five years.

This was quite a shock. Somehow, even after all I've been through so far, this was the point at which it hit me that I really have cancer. I had a bit of a meltdown as I tried to process the news. During the three month wait from diagnosis to surgery I could feel the cancer growing. Initially it was not noticeable, but prior to surgery, I could feel a large, hard area in the breast. Could I have avoided further treatment if I'd had the surgery sooner? I'll probably never know.

So, the next step is appointments with both the medical oncologist (chemo) and the radiation oncologist. They will have the final say on what is the best treatment in my case. Obviously the decision is ultimately mine, but I will go with their recommendations. For the past few days I have been reading about the possible treatments as well as genetic testing, which may help determine whether or not I need treatment, although at a large financial cost. I'm feeling better about it all and I feel my resilience returning ready for the next step.

Next I will talk about my appointments with the oncologists.

Breast Cancer - my stay in hospital

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post talking about my surgery

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

All dressed and ready to go home from hospital. I didn't expect to be standing up or walking around six days after surgery!

The Hospital Experience

After six days in hospital, following the mastectomy and breast reconstruction, I was allowed to come home! Being in hospital was overall a very good experience and the nurses were absolutely brilliant (so grateful to Bronwyn, Dorothy, Sandra, Rhiannon, Sarah and Madi). However, I think the lack of fresh air, normal food and uninterrupted sleep actually made me sick! My appetite declined over the six days in hospital and I had a constant headache for the last three days. It was heaven to get home and sit in the garden eating fresh fruit. I immediately began to feel better, regained my appetite (by Day two I was starving) and now, Day 4 at home, I'm feeling pretty good.

Hospital food: mmmmm....frozen peas and corn!

I mentioned in the last post that there was lots of checking in hospital. It was every 30 minutes the first 24 hours, then hourly, two hourly and four hourly for the subsequent days and nights. I had my own room, which was great, but as the nurse visited less frequently I found myself getting a bit lonely. Outside visitors were restricted to two per day for two hours morning and evening due to Covid. On my second day in hospital, the nurse came in with some masks for me to wear. She said that the state had moved to 'Amber' level (Western Australia was having around 20 cases of community transmission per day for the first time) and all patients had to wear a mask. The staff had to also wear protective glasses or a visor. This was not good news. Luckily, she came back a bit later and said that I didn't have to wear the mask as I had my own room, but patients in shared rooms would be required to wear them, even to sleep!

This is my son pretending to be dead in my hospital bed! He has my calf massagers on, which pump air alternately along the lower legs to reduce the chance of blood clots (I wore these day and night with my compression stockings). I also had to have daily heparin injections for this reason (ouch). The bed had to be inclined to 45 degrees so my tummy wouldn't be stretched while it healed. For the first four days I had a heated blanket over my left side to help healing. In addition I have to wear a compression bra, which I was already wearing when I woke up from the anaesthetic, and an abdominal binder. The bra is a tight (so tight!) crop top style with hooks and eyes all down the front and on the shoulder straps. Sexy! The binder is a very wide, thick elasticated strip, about 30 cm wide, which wraps around the whole lower torso with velcro to get it on and off. It is hot and rides up. I have started wearing it over a tank top to reduce skin irritation. The bra and binder are to be worn for three months!!!

After three days I was able to go to the bathroom (the blue door on the right) by myself and the catheter was removed. I could also shower on a chair with my wounds covered with sticky plastic sheets and my surgical drains in a bag! The second time I was due for a shower, my partner had just arrived for a visit so was roped in to help me out. With my movement limited, he volunteered to help remove my various compression garments and find a dry spot for my pillowcase full of drains. 'This should be sexy' he smirked as he peeled off my surgical stockings!

The view from my hospital window

When I came out of surgery I had three surgical drains. One in the reconstructed breast and two in the abdominal region. According to one of my nurses, some people have up to eight drains after this same procedure, particularly if they are larger ladies or less healthy overall. I thought the drains would emerge from the edge of the wounds, but they were inserted at a different point below the scars and pushed upwards to the surgical sites. Once the fluid from the drains becomes clearer (less blood) and the volume is below 20-30ml/day then they can be removed. I had two removed on Day 4 and the last one came out on Day 6 after surgery. It was good to have them all out before coming home so I didn't have to have a nurse visiting me. It didn't hurt when they came out. The nurse just cut the thread holding them in, I was told to breathe in and the tube was pulled out as I exhaled. The tummy ones were about 40cm in and the sensation was very strange when they were pulled out!

There were two main wound sites, the breast and the tummy, and then small holes where the drain tubes went in. The only scarring to the breast is around the nipple. The old breast (which had 410g tissue removed) must have been taken out through the hole and the new one (formed from 469g of tummy fat) squeezed in. I'm quite amazed at how neatly this was done. The reconstructed breast is usually made a bit larger so it can be adjusted later if necessary. I have all my old breast skin except for the nipple. The plastic surgeon told me just as I went into theatre that he thought the result would be aesthetically better if the nipple was removed and the breast surgeon said it was also better in terms of ensuring the cancer was removed. Of course I agreed. There is surgical tape around the nipple area, but no other dressings. The nipple itself, which is now a circle of tummy skin, had two blue stitches in it to indicate where the newly joined blood vessels were so the nurse could easily find where to check the blood flow with the doppler. The abdominal wound, which goes from hipbone to hipbone, is covered with surgical tape and dressings. I was most surprised to discover that I had a new belly button. The whole region of skin above the old one had been cut and pulled downwards to join the lower abdominal cut (just above the bikini line), meaning that the old belly button had disappeared into the scar. It looks like the new one has been made by cutting a hole and stitching around the original indent. Fascinating!

There was some swelling to the surgical sites, but not much pain at all. I initially had a 'pain button' to self-administer Fentanyl, but it made me nauseous (a common side effect of opioid drugs) and I vomited on the day after surgery after taking it, so stopped using it. Tramadol, another opioid taken orally, also made me feel sick, so I stuck with Panadol and a slow-acting pain killer. I also had antibiotics and an anti-inflammatory. Now, on Day 9, the swelling is much reduced, there is little to no bruising and only minor discomfort. I am not taking any pain medication, but I'm being very careful to rest and not lift anything over 2kg. I'm doing arm exercises as instructed. I feel energetic and ready for action, but it's a different story when I actually get up! I'm walking well, but slowly, and can climb the stairs no problem. The hardest thing is getting up from bed, but even that isn't that difficult.

While I was in hospital the plastic surgery team, loads of them, came round every day at 7am to check my progress. I was in the plastic surgery ward, rather than the breast ward due to the type of reconstruction I had had, which was a little bit like a skin graft. I only saw a breast doctor once or twice and it was not the same one I'd seen at my appointments. I asked the breast doctor about the surgery, how many lymph nodes had they taken etc., but she said she didn't know. That was odd and disappointing.

Early days in hospital with heated blanket over me and drains on the floor

On Day five after surgery I was told that I had to leave my room and move into a shared room. My bed, chest of drawers and everything was just wheeled from one room to the next, so that was easy. I was put into a room with four beds. I was pleased to note that none of the patients in there were wearing masks. They told me that most of the nurses didn't worry about enforcing the new mask rule. That was a relief. I was already feeling unhealthy. I was also told by a nurse that if the 'Amber' status changed to 'Red' then it would be enforced and no visitors would be allowed at all. I'm so relieved I had surgery before that happened.

The other occupants of the room were all extremely interesting and I had no time left to feel bored or lonely. Briefly, one had been flown down from the very top of the state to have surgery for a small cut on her finger so that it didn't develop nerve problems and pain. She was supposed to have gone into theatre on Thursday afternoon, but by 4pm Friday she was still waiting as there had been an influx of emergencies, one of which was a shark attack. I felt so sorry for her fasting all that time apart from one meal late Thursday night. The second person was a homeless aboriginal lady whose little finger had been badly bitten by her boyfriend and had become infected. She was told on Thursday morning that her finger would need to be amputated and she had done a runner from hospital. She was not back by Friday afternoon (during which the outside temperature was 43C) so her belongings were packed up and the bed given to someone else. The third occupant was a very energetic lady who had shattered her lower leg in a motorbike accident. The accident was caused by someone doing an illegal U-turn, but she had been over the legal alcohol limit, which complicated everything hugely. She had been in hospital 23 days and faced several more surgeries and the chance that her leg would need amputating. She was brave and funny and interesting and I really hope she's going to be ok.

In the lead up to going to hospital, as the number of exposure sites was rising, I got really worried that I might become infected with Covid, or be required to isolate for 14 days if I inadvertently visited an exposure site, and my surgery would have to be postponed. After three months of anxious waiting for that surgery date, I was not about to let that happen. I laid very low in the last couple of weeks, only going out for essential reasons and for exercise. My entire focus was the surgery and being as well prepared as possible. Part of that preparation was exercise. My preferred exercise is walking, so I did a lot of that. With the days being extremely hot, I got up at 5.30 or 6am and went out then. It is lovely out at that time. I walked pretty fast, averaging about 10 minutes per km and would do 4km. I would walk again later in the day if I could. I ate healthily too, reduced my sugar intake and stopped drinking alcohol, not that I drank much before. When I went in for surgery I felt really strong and healthy. I still feel the same nine days after surgery, just a bit slower. I absolutely believe that the exercise was the reason I have bounced back so well and that the drains came out quickly. 

What next

This has been a long and disjointed post and I hope you're still with me!, I'll just briefly say that I will receive my pathology report in a couple of weeks, which will be when I find out whether I need chemo. However, my discharge notes contained a summary of the surgery (above) and I was pleased to see that only two lymph nodes appear to have been taken, the sentinel node and the enlarged node containing the radioactive seed. Since these would have been checked for cancer during surgery, I'm hopeful that none was found and that is why no further nodes were removed. This means there is a chance that I won't need chemo, but I'm trying not to get my hopes up too much about that.

My next post talks about healing from surgery and my Pathology Report.

Breast Cancer - Surgery

This post follows my initial post about Sewing a gown for breast cancer surgery

and my previous post talking about breast reconstruction

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

Pre-Admission and another scan

One week exactly before my surgery day, I had to attend a Pre-admission appointment. This involved seeing a nurse to have my height, weight and blood pressure recorded. I then met with the anaesthetist who explained very thoroughly the surgery in terms of the anaesthetic process. She said that the surgery was likely to take 6-8 hours and I would be put to sleep with an injection. During the surgery they planned to put in a drip, a catheter and a ventilator and they would give anti-nausea medication during and after surgery as it is really important not to feel sick. She said I would be monitored by one or two anaesthetists for the whole operation. They would both be there at the beginning and end, but in between would be able to take turns and have a lunch break etc. The surgeon does not get a break! 

I was asked several questions, including whether I consented to receiving a blood transfusion during the surgery (the risk of this is very low). There was no hesitation about me saying yes to that question. The anaesthetist then said that she'd had a patient the previous week who had said he would only consent to a blood transfusion if there was no COVID vaccine in the blood!! What, he'd rather die?? Not me, I'm quite happy to put all my trust in the surgeons :)

In case you are wondering, blood is not screened for the presence of vaccines and anyway, a vaccine is completely cleared from the body after a few days or weeks, leaving the antibodies, produced by the immune system, to fight off an infection.

After that I saw another nurse, who explained all about the day of surgery, where to go and what to expect. That was really helpful.

The following day I had to go to the hospital again. I needed to have a radioactive metal seed (Rollis Seed) placed in the lymph node that was enlarged. During surgery, that particular lymph node containing the seed could be identified using a Geiger Counter and removed. I also needed a CT Scan to check the blood supply in my abdomen. This was to make sure that there were plenty of healthy blood vessels in the tummy fat that would be used for the breast reconstruction. The tummy blood vessels would be cut and then reattached to existing blood vessels in their new position in the breast. This meticulous microsurgery is why the procedure takes so long.

One of the mammogram machines

The radioactive seed was inserted using ultrasound, a local anaesthetic and a large needle that I did not look at! The doctor found the enlarged lymph node using ultrasound and then guided the needle into position by checking the ultrasound screen. The tiny (about 3mm) seed was then injected into the lymph node. It all took about half an hour and wasn't too uncomfortable. Afterwards I had to have a mammogram to check the position of the seed. Then I had to have an x-ray of my shoulder area to check that the seed was definitely there and I was given a yellow card to carry with me until the day of surgery. The reason for all this was that the seeds must all be individually traced from injection to removal to make sure that no radioactive material is left lying around. If I died in a car crash or something before surgery, the card would alert people to the fact that there was a seed present and it would have to be recovered and returned to its rightful place. I thought that was rather interesting.

After that I walked over to 'Nuclear Medicine' for the CT scan. I had been fasting since 6am for this and was getting quite hungry after the morning's activities. I needed the contrast dye injection again, which was done by machine, via a cannula. while I was lying in the scanner. The scan commenced immediately after the injection. The machine told me to breathe in and hold two or three times and then it was done.

So...now I just had to wait another six days until Surgery Day. I actually had a pretty busy week. Australia Day was on the Wednesday and I went down to watch the fireworks, which was nice. I thought I would be feeling more and more nervous as the surgery got closer, but I felt strong and positive. I was ready!

Since finding the lump I have had:

Scans - 4 (Bone scan, PET scan and two CT scans)

Mammograms - 3

Cannulas - 5

Ultrasounds - 4

Biopsies - lots in one session (about 17)

Seed insertion - 1

Detailed arm measurements - 1

Surgeon appointments - 3

X-rays -1

Surgery

Finally, three months exactly from diagnosis, it was surgery day. I managed to get a bit of sleep the night before and was at the hospital at 6.30am. Before the actual surgery I had to have a scan to find the sentinel lymph node, which is the first one that lymph from the breast drains into and therefore the most likely node to contain any cancer that might have spread. The scan involved an injection of radioactive dye directly into the breast, under the skin. It stung a bit, but was over in about 30 seconds. I then lay in the scanner while x-rays were taken of my left underarm area. Apparently it can take between 20 minutes and two hours for the sentinel node to show up. fortunately it only took about 20 minutes for me.

Early on in the surgery, the sentinel lymph node is removed and is immediately checked by a pathologist in theatre. If cancer is found in the node, further nodes may be removed during the surgery. After surgery, all the tissue is thoroughly checked by a pathologist and a full report is generated which is used to make future treatment decisions.

Then it was off to get prepped for surgery. Just before I went into theatre, the plastic surgeon looked at my breasts as I sat up straight and drew lines all over them and on my tummy where he would remove the tissue for the reconstruction. He wanted to match the reconstruction to the size and shape of the breast that was not being removed. He did it all pretty quickly, which surprised me. If I was sewing a copy of something, I would take much longer to work it all out, but he seemed happy with a quick look!

Once in theatre, at about 8.45am, I got a bit overwhelmed by all the people and the thought of what was about to happen. There were a few tears. Luckily the team was all ready to get going and the last thing I remember was seeing the clock showing 9am and the anaesthetist saying she would give me 'champagne bubbles'.....

...next I knew I was in recovery. The clock said 5.45pm. I felt like no time had passed. I was taken to my own room where a nurse was with me for the next couple of hours. I felt really tired and just wanted to sleep. 

The room was heated and I had a 'Bear Hugger' blanket over my breast area. This is like a small, very light, inflatable mattress that has hot air blown into it constantly. The warmth helps the blood vessels to stay dilated and healthy as they heal in their new position in the breast. It was a bit hot and sweaty, but not too bad. I had a pain button containing Fentanyl which I could press as I needed it, but it made me feel sick and caused vomiting, so I didn't use it and just had Panadol. The pain wasn't too bad.

I was checked every 30 minutes for the first 24 hours. This involved having my blood pressure, oxygen and temperature taken and having the breast checked by feeling it and listening to the blood movement using a doppler. Any minute changes in the breast (swelling, redness, hardness, bruising) were reported to the plastic surgery team and a doctor would come and check. Each time they said it was fine, but there was a chance that a change could mean a trip back to theatre to have some repair work done, for example a haematoma removed. The 30 minute checks were exhausting and made the night drag on very slowly.

I had three drainage tubes, one from the breast and one from each end of the tummy scar. This scar goes from hip bone to hip bone. The drains will stay in until the liquid coming out slows to about 20ml in 24 hours. The breast one is a bit uncomfortable as I have to wear a compression bra which presses on it. I also have to wear an abdominal binder, a massive elastic thing, but the abdominal drains feel ok.

Day 2 - Feeling pretty good

It is now Day 2 after surgery. The second night I was only checked every hour, which was much better and it's now down to two hourly. I was able to get out of bed twice on Day 1 and sit in a chair. I was very happy to see my partner for a while (visitors are restricted due to COVID) and chat on the phone to my family. I had some food and felt pretty good. Today I'm very comfortable in a chair writing this blog post. Hopefully the catheter will come out today (it's held in by a balloon apparently!) and tomorrow I may get some drains taken out and be able to have a shower. I'm feeling good, almost pain-free and very happy that the main surgery is done. I'm hoping the news will be good from pathology, but I won't know for about three weeks.

PS the new breast looks pretty good from the angle I'm looking at it. The nipple was not able to be saved, but I'm ok with that as it was a decision made for health and aesthetic reasons. The breast is currently quite swollen so looks huge!! My tummy looks concave. I have my friend Robyn calling me Gisele Bundchen and my sister comparing me to a Barbie doll!

My next post talks about my hospital stay in more detail and when I got to go home.

Breast Cancer - talking about reconstruction

This post follows my previous post about my full diagnosis of breast cancer. 

You can find all my breast cancer posts by clicking the tab at the top of the blog.

Please note that this is my personal medical story. There are details of medical procedures. I am not a medical doctor. 

PET Scan

At the end of my last post I was waiting for the PET scan to check my lymph nodes and for an appointment with the plastic surgeon. 

A PET scan uses a radioactive tracer to detect areas of the body with high chemical or metabolic activity. Cancer cells can have a higher metabolic rate than normal cells so will show up as bright spots on the scan. My surgeon wanted to see, in particular, whether any cancer had spread to my left underarm lymph nodes.

On the day of the PET scan I had to fast for 6 hours but fluids were allowed. I drank lots of water which again helped with having the cannula inserted. The radioactive tracer they use is bonded to glucose which will travel to the 'hungriest' cells in the body after fasting to see where there is most cell activity. 

Once the cannula was in, I was seated in a reclining chair in a cubicle with thick walls and was given a hot blanket, which was lovely. The nurse stood on the other side of the wall and fed the injection tube through a small hole in the wall so she wasn't exposed to the radioactive substance. I could hear the clicks of the Geiger Counter measuring the radioactivity. Once injected, I had to sit and relax for an hour in the dark so the tracer could travel around my body. I was not allowed to use my phone or read as that would apparently make my fingers and brain 'light up' too much in the scan! 

When the hour was up, I was directed to a special toilet to empty my bladder as urine contains high amounts of excreted tracer. There were signs on the loo instructing everyone to be seated to avoid radioactive splashes! I then had the scan in a big machine.

Afterwards I was given a sandwich and cup of tea (most appreciated) and told that I should not come into close contact with anyone for the next few hours. For the trip home I was told to sit on the back seat of the car on the passenger side for the safety of the driver!! For all these precautions, apparently the level of radioactivity is considered safe for the patient and I'm not going to think too much about it for now. 

It was more than a week before the results arrived. Unfortunately nothing had apparently showed up at all on the scan. I was told that none of the cancer had 'lit up' because it was not a 'hot cancer'. It was disappointing to have no further information from that procedure.

Ultrasound

Since the PET scan yielded no results, I was sent for an ultrasound on the lymph node of concern. The plan was to put a 'clip' on the node so it could easily be found using ultrasound, scans etc. 

Waiting for the ultrasound

The clip turns out to be a tiny wire ring, less than 0.5cm across. It was a relief to see how small it was. I'm not sure how it goes on to the lymph node, as I didn't end up needing it, but according to the nurse it isn't a big deal and doesn't hurt afterwards. The radiographer decided that it was easy to find the lymph node as it is enlarged, so the clip wasn't necessary. They will put a radioactive 'seed' in it just before surgery though.

The offending lymph node

Plastic Surgeon Appointment

This was the big one. Finally I would learn whether I could have a reconstruction after the mastectomy and what kind of reconstruction would be possible.

Masks were required due to a positive COVID case in the Perth community. I am hoping that we can stay COVID-free at least until my surgery is done. I know cancer surgery would still be a priority, but an influx of COVID cases and possible cancellation of elective surgeries really worries me. It would not be good for anyone needing a hospital. I am now triple vaccinated and hope that will keep me safe while I wait.

Back to the plastic surgeon. You may remember that I was hoping to have a breast reconstruction at the same time as the mastectomy to minimise the number of surgeries required, to enable the skin and nipple to be kept and for emotional reasons. I feel that it would be less of a shock if I can wake up from surgery with two breasts. This is a very personal decision and is just what I would prefer. Everyone needs to make the right decision about whether to have reconstruction based on their own circumstances.

My hope was that I would be able to have a DIEP reconstruction where tissue is taken from the tummy to form a breast and the blood vessels are reattached in the new location by microsurgery. It is a long procedure, generally 10-12 hours of surgery and a long recovery time, including an average of five days in hospital, but you end up with living tissue in the breast and hopefully little or no further surgery is required. There are several other options for reconstruction, such as a variety of breast implants or tissue from other areas of the body and I was open to discussing all of them.

The plastic surgeon was very professional. He had a look at my breasts and tummy and said that I looked to be a good candidate for DIEP reconstruction. He got me to lie down to check whether I had enough tummy fat to make the breast. He did this by pressing his open hands on either side of the breast and then on either side of the tummy muffin-top. Yep, they seemed about the same size so it was looking good! I had expected a more technical approach, but that was pretty much it! He said he would need to take all the tissue possible from the tummy, so it would be very 'tight' and flat and my breasts would appear bigger as a result (OMG!). I would be walking hunched over for a while as it healed. 

I then spent some time with another doctor while the referrals were made to book the surgery and for another CT scan to check blood supply in the abdominal area. A good blood supply is important for the blood vessel microsurgery side of things so the tissue doesn't die after the procedure. Apparently smokers are unlikely to have a good enough blood supply. Women who have had previous major abdominal surgery are also not good candidates for a DIEP. I have an appendix scar from 30 years ago that's about 8cm long, but luckily I gave birth naturally so no C-section scars. This should mean that it's all systems go!

A few days after the plastic surgery appointment I received my surgery date. Not long to go now. I feel a LOT better now I know what will be happening with the surgery and when it will be. It is a huge relief to know I can have the surgery I wanted and that I'll be waking up with the cancer gone and two breasts. The tummy tuck is an added bonus. I am trying to focus on how things will be in about three months' time and not think too much about the major surgery and long recovery I am facing in the immediate future.

I am spending the next little while getting my bag packed for hospital (the list here is helpful) and getting the house cleaned and arranged for when I get home. I am increasing my exercise to make sure I'm feeling fit and well going into hospital. My Dad has had several major surgeries over the years and is convinced that being fit is the key to success. I'm hoping for the same! I'm trying to do something enjoyable every day. 

Next time I will report on the outcome of surgery.