Dear Rock,
I can’t help with the MS side of things, but your wife’s oncologist and neurologist are likely to liaise over her treatment. However, I thought I’d get in touch, since I have BC, diagnosed last July at the age of 38. I’m a GP, and like your wife, have had considerable hands on experience of terminal care. Somehow we don’t expect to get ill in our profession, and our knowledge makes it much harder initially. We know the significance of every bit of information immediately, and it often makes us assume the worst. For example, in the first couple of minutes after I was told, all sorts of things were running through my mind from worrying about lymphoedema, to the effects that radiotherapy could have on my hobby (singing), to thinking of all those patients I have seen dying young in less than ideal circumstances. I had images of botched surgery in my mind. I also became very concerned that I might have bone mets (spread) as I’d had severe hip pain for 5 months. I had an agonising 3 week wait for my bone scan to come back clear. Most patients can come to terms with things a step at a time, but in the profession we have to face the enormity of it all straight away. I can’t say anything to make the worries your wife will naturally have go away, but I can say that it does get easier. I remember I didn’t sleep at all for several days, and it was weeks before I stopped getting nightmares. But now 10 months down the line, I am enjoying my life, though still undergoing treatment. I feel that because I had to come to terms with everything at once, I got it out of the way quickly.
On the other hand, being in the profession makes some things easier, since we are able to access and understand medical information and choices much more easily than most. I have been able to spend a lot of time researching my treatment online whilst I have been off work. I chose to have my surgery in a specialist plastic surgery unit well outside of my area, both because of their specific expertise (I had a procedure not available locally) but also because I wasn’t happy to have that kind of surgery in a hospital where I was known. Knowledge definitely made it easier for me to make decisions, and cope with any complications that arose. I also had less fears than most going through surgery, despite going to theatre 4 times in a week with 20 hours of operating time due to complications. I found that my experience made me very realistic about what to expect post op, and I knew what to expect of my scars/appearance at various stages. Other women on the ward were very shocked post op when they looked in the mirror and there were alot of tears, whereas I was pleasantly surprised (I had an immediate reconstruction), having seen so many older patients who had surgery 30 years ago or so. I have definitely been able to optimise and co-ordinate my care due to my experince and knowledge, and I’m sure your wife will find the same. Medical and nursing patients are not easy, but I decided very early on not to be concerned about that. So I ask questions and research until I’m happy. I’ve not been silent when care has not been up to the standard I expect, and I don’t see why I should! Having spent all of my adult life serving others to a high standard in the NHS, I now feel that I’m owed the best care myself.
To answer your specific question about lymph nodes: There are a number of things which increase the risks in breast cancer, and lymph nodes are just one of these. Other features which increase risk are increasing tumour size, younger age, the grade of tumour, the histological type, herceptin positive status, hormone negative status, and the actual number of positive lymph nodes. So for example, I had 11 positive lymph nodes after 6 months of chemo. This, plus my young age and large tumour put me in a ‘high risk’ group for recurrence. If your wife really wants to know exact figures, her oncologist will oblige- they tend to use a computer programme called aduvant online. However, statistics are just numbers, and don’t tell us anything about our personal future. For example, my risk of getting breast cancer at my age was about 0.05% per year, ie very low risk, and yet here I am with locally advanced breast cancer. My prognosis is not nearly as good as I initially hoped, but what counts is what group I end up in, not the percentages.
I wish you and your wife well during this very difficult time. Breast cancer, like MS, is not at all easy to life with, and no amount of medical experience can prepare you for what it actually feels like. My personal approach has been to do everything I can to improve my chances, and then to make sure I enjoy my life. I recognised early on that the most significant thing I had lost was confidence in my future- But in reality none of us know what lies in store, and we could get run over my a bus tomorrow. So in fact I had lost something that didn’t exist.
It won’t be easy for you either. My husband has been fantastic in supporting me, and he let me go through the various stages of grief and acceptance at my own pace. I have found one of the most annoying things is to be told to ‘be positive’, since that can feel like denial to those of us with a lot of knowledge, and he managed to avoid this! Do take advantage of the support available locally, whether through your breast care nurse, or the cancer support centre (there’s usually one attached to a main hopsital)- they usually offer support to partners too. And once the shock has died down, consider making time to do the things that you enjoy, and do let off steam to your friends etc- cancer treatment is a very long road, and we have both found it helps to have some normal activities that don’t involve cancer…
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