So here is the start of the series of posts on what happened post-Hallwang.
I had an ultrasound the week after I got back from Hallwang, and it showed that the tumour had shrunk, as had the lymph nodes. I was thrilled.
However, the cancer had not been down-staged sufficiently to avoid surgery, and even though the tumour continued to shrink in the weeks to come (from just that one dose of TACE), it was still large relative to the size of my breast. And it was going to have to be a mastectomy. So it was a bit of a mixed bag of results. The main advantage of having the TACE was that the breast tissue was saturated with chemotherapeutic agents, so that during surgery, any stray cancer cells would be mopped up. And of course, the Removab antibody treatment meant that there was some protection from the cancer before and after surgery.
Prof Vogl had said that if I returned to him in 6 weeks’ time, he would shrink the tumour further. So I asked Hallwang if I should return for another TACE, but for some mysterious reason, the doctors didn’t deem it necessary and no amount of my cajoling could change their mind – perhaps they thought it was TACE overkill for an operable tumour.
So I had to resign myself to the fact that I had to lose the breast.
The psychology of losing the breast is something I may cover in another post. Needless to say, I was prepared for it, but I wasn’t a happy bunny. I guess I was fortunate in having time to get used to the idea. I know many women who are rushed into breast surgery, as part of the roller-coaster ride that is cancer, and it must be devastating.
I’ve met only one person who was ecstatic about her mastectomy: a woman who had insisted on a bilateral mastectomy even though all she had was pre-cancerous cells in one breast – she even insisted that the nipples be removed. She told me how thrilled and relieved she was after the mastectomy, and how she preferred her breasts post-mastectomy as they were perkier. But that was her approach to life. We are all individuals. I am not Angelina Jolie.
The next decision was: what sort of mastectomy – reconstruction now or later? And should I keep the nipple or not?
My surgeon who was also a plastic surgeon recommended immediate reconstruction using own tissue taken from the back of the shoulder muscle (the latissimus dorsi). In this procedure, the latissimus dorsi would be detached, but still attached to its blood supply, and then swung round and burrowed under the armpit to where the breast was and reformed into a new breast. It was supposed to give a softer and more natural look and feel. It meant that a silicon implant would not have to be used. He had performed something like 5,000 LD reconstructions.
For some reason that didn’t appeal to me. There would be loss of muscle function to the shoulder, the inability to do triceps dips. I was assured that other muscles would take over the function. I play the piano and was worried that loss of the LD would affect my playing – I was assured this would not be the case.
I met a woman who kindly showed me her LD reconstruction – I am very grateful to her for her openness and to be honest, it looked OK for such a drastic operation and sacrifice of a muscle (if you don’t mind looking as if a crocodile had taken a bite from under your shoulder blade). She told me that she had recovered full mobility and function after about a year, and could even do cartwheels!
I was wavering on the side of the LD, but still undecided.
I had another meeting with my surgeon, and was still humming and haaing. I had a meeting with the breast care nurse who lent me a book filled with empowering messages and beautiful photos of women looking like erotic models, with their own-tissue reconstructions (but strangely-enough, photos of the sites where the donor tissue had been taken from were missing – too many crocodile shots, perhaps?)
As you can see, I find it hard to make my mind up! I read books on implants and own tissue reconstructions and made the mistake of watching YouTube videos on reconstructions. All I can say is: don’t bother with the books and YouTube – they will just confuse or scare you. Just go with what you feel based on your discussions with the breast cancer nurse and surgeon.
[If I sound pretty calm, and logical – well, I’m not normally. But when it comes to cancer and its treatments, I go into a kind of robot mode. It’s the only way I can distance myself from what is pretty drastic treatment. And it helps that I’m writing this post months after the event, when distance allows me to detach from a psychologically traumatic experience.].
I did agree with getting an immediate reconstruction though – I couldn’t face another bout of surgery further down the road to reconstruct the breast. Get it over and done with, is what I thought. And having fought so long and hard to keep my breast, I didn’t think I could face not having a breast. I remember about six months prior to my decision talking to a woman who’d had a mastectomy, and being filled with horror. Well, I was now on the verge of joining the ranks of all the women in the world who’d had their breasts mutilated and if they survived it, I hopefully would.
In the end, five factors made my mind up for me:
(1) I spoke with someone who’d had an implant instead of an LD reconstruction and she told me that a physiotherapist had said that an LD might not be a good idea when a person grew older and needed the support of the shoulder and arm for sitting down.
(2) the longer recovery period (3 months instead of 3 weeks – there was no way I could afford 3 months off work).
(3) what if there was infection in the muscle reconstruction and I lost the use of both the LD and the breast?
(4) I spoke with someone who’d had an LD implant and she told me that when she coughed or sneezed, the muscle that was now her breast also twitched with the cough. [update May 2014: please note, if you have a silicon implant under the chest muscle, once the chest muscle heals, it takes on a life of its own, and the breast with the implant twitches when you sneeze, cough or flex your chest. So getting a silicon implant makes no difference in this regard]
(5) A friend’s friend was a yoga teacher. This yoga teacher reported that a student in her class was having issues with certain asanas, and she couldn’t work out why the student’s muscles wouldn’t behave the way they should. Then she found out that the student had had an LD reconstruction – aha! Now, I’m not a yoga groupie, but I did not like the idea of muscles not behaving the way they should.
However, I wasn’t enamoured of the idea of an implant either. Foreign body in my body and infection and horror stories of leaking silicon – argh. My surgeon also said that there was a higher risk of infection for implant reconstructions vs own tissue.
I also made the mistake of reading a book on implants and it had the most gory pictures of what happens if your body develops an auto-immune reaction (i.e. mutilated and lumpy breasts, fibromyalgia) to the silicon implant. I showed my surgeon the book and he said: “do not read that book, it’s out-of-date.” Strange – it was on the bookshelves at The Haven breast cancer charity, and well-thumbed.
But for me, an implant offered a shorter recovery period – 3 weeks instead of 6 weeks for an LD reconstruction and also I got to keep my LD muscle. I wanted to have as little time off work as possible.
The other option that occurred to me was to have a mastectomy without reconstruction, to leave it till later. I’ve got small breasts – would I really miss a breast? Would anyone notice? Writing this months later, it seems almost like my subconscious had been trying to guide me, but I wasn’t prescient enough to take note.
I figured I could live with the risk of a silicon implant far better than I could with the risk of losing a muscle. So an implant it would be. As it was a small implant I wouldn’t need an expander. The implant would be placed in a pouch made under my pectoral muscle.
Now all I needed was a date for surgery.
Please note: a mastectomy will not guarantee the cancer won’t return. Cancer cells released during surgery lurk in the scar tissue. Recurrences happen, even with radiotherapy and chemotherapy. So don’t let the surgeon tell you that the mastectomy and clear margins guarantee no recurrences. I have many friends who have done it all: mastectomy, radiotherapy, chemotherapy, only for the tumours to recur on the scar tissue area. It is a con by surgeons if they tell you that recurrences don’t happen with mastectomies!