Hi, I’m ‘Beatis’, I started this blog and am one of its moderators. I was diagnosed with breast cancer in October 2007.
For me, standard treatment has always been the only option, but I know some people choose a different path, like two friends of mine did. It was these women and what happened to them that ultimately lead to this blog.
Shedding some weight
After more than 30 years of weighing the pros and the cons, I had finally come to the conclusion that one can indeed have too much of a good thing and the time had come for me to have a breast reduction. The operation went very well, I had no pain and hardly any discomfort and my only regret was not having it done earlier.
I was planned for a check up on 22 October 2007. When I entered her office the plastic surgeon introduced me to a nurse practitioner and told me that cancer was found in the tissue of my left breast, as well as quite a considerable spread of DCIS.
The tumour they had found was still small: 1.1 cm radius. That was a positive thing. That there was so much DCIS was not. Both DCIS and tumour were grade III/IV and high MA index. The tumour was tested negative for estrogen receptors (ER-), progesterone receptors (PR-), and HER2. It meant I had “triple-negative breast cancer,” TN for short, which is not the most favourable kind prognosis wise, because it tends to come back more often and sooner than other breast cancers.
All this meant simply that my breast had to come off. Because of my breast reduction, sentinel lymph node examination to see if the cancer had spread, was no longer possible, so I needed lymph node dissection as well. They expected to remove about 10 lymph nodes, which would then be examined for metastases. I was scheduled for a meeting with a surgeon oncologist that Wednesday.
The plastic surgeon and the NP were very sweet. They hugged me and took ample time to comfort me and answer what questions I had. I didn’t have many though, I was dumbstruck. They gave me a folder with a stack of brochures on breast cancer and treatments. They gave me tea and biscuits. The NP dialled my husbands phone number for me, for I couldn’t; I felt dead calm but my fingers didn’t work and I couldn’t operate my phone.
My husband came to pick me up from the hospital, crying and miserable. We hardly said a word on the way home. I could only think of him and how upset he was and how to break it to my daughter, my poor girl. I needn’t have worried. She was upset of course, she cried for a few days and from then on she was only wonderful all the time.
Fear and hope
I was very scared. I have seen people very close to me die of cancer and I knew that when cancer has spread beyond the lymph nodes, it usually means you’re done for. I also knew that no alternative therapy has any efficacy when it comes to curing cancer. Therefore there has never been a doubt in my mind that I would follow standard treatment.
At home I devoured all the brochures that were given to me until I practically knew them by heart. I scoured the internet for information on breast cancer and found they would probably advise me to take an adjuvant chemotherapy, which in fact they did. I called a few knowledgeable friends about possible treatments, new research and the truth of alternative treatments claiming to be able to cure cancer. I just wanted to be sure of having my facts straight.
We wrote down the questions we wanted put to the surgeon oncologist that Wednesday. Then I tried to put the matter out of my mind, which of course I couldn’t.
I remember vividly sitting on the couch in the living room that afternoon and thinking: there is nothing more wonderful than this life, my own ordinary life, with my family, my friends, my pets, my job; it’s all I want and all I need for being happy and I’ll do anything, absolutely anything within reason to keep it.
It’s funny how the mind works, in the way certain things stand out in memory. I’ll never forget what a beautiful day it was, that 22nd of October, possibly the most beautiful day in one of the most beautiful autumns in years.
For my check-up with the plastic surgeon I had to go by train to the nearest town where the hospital was, and I decided to walk to the hospital from the station, about an hour and a half. I so enjoyed the walk, the crisp fresh weather, the light, the colours of the trees, the beauty of the city.
Another image that is engraved in my memory is the first night after my mastectomy. It had been a very cloudy, bleak day. I had dozed off and when I woke up it was dark and the sky had cleared up completely. From the 10th floor where I lay I had a breathtaking view of the city and the starry sky above. I remember feeling happy and peaceful; after my operation they had told me that the preliminary examination had shown my lymph nodes to be clear, my breast had come off; perhaps there was a chance I would be lucky after all.
Ten days after my operation all the results were in. The lymph nodes were definitely clear, but the cancer was a very fast growing one and they had found two other small tumours in the tissue. They advised adjuvant chemotherapy, as I had expected.
We asked the oncologist what it would do in terms of prognosis. He said: an average of 5 to 7 % improvement on total 10-year survival for all non-metastasized breast cancers. Why so little? Because it’s given to destroy metastases that are too small for detection. We don’t know if you have them, for we have no technical means to detect them. Consequently, many women don’t need the chemo because they don’t have these mets to begin with, but since we don’t know who they are, that doesn’t help us. He didn’t think 5% was something to be sneezed at though, for to him it simply meant that out of every 100 women, 5 would survive their cancer instead of die from it.
He explained about relative and absolute improvement. He explained that the percentage is based on all women receiving adjuvant chemo, but if you don’t have micro metastases, the chemo will do nothing for your prognosis and therefore have no positive influence on the general average.
However, for the women who do have micro metastases, the chemo may enhance their personal prognosis much more than the average, depending on the kind of cancer they have. In general, the more advanced or aggressive the cancer is, the greater the benefit of chemotherapy on long-term prognosis will be. Also, triple negative breast cancer responds better than average to chemotherapy. In my case, chemotherapy could enhance my long-term prognosis with as much as 15%.
Would he do it himself? He would, he said. In fact, his wife had, at his advice, when she had breast cancer. She was doing fine now. He showed us a picture of her, with his children, three boys who were still young.
There’s a good chance you were in time, the oncologist said. But I hadn’t been anywhere. I hadn’t done anything. I now had the luck I so wanted, but I felt sad somehow too, because of so many others who were not so lucky.
During my treatment I coulnd’t help thinking of two women I had known with early stage cancer who had decided to forgo standard therapy to treat their cancer with alternative therapy and had suffered a horrible and untimely death. One of them was told by her “therapists” that only a complete psychological and spiritual transformation would make her cancer go away. For some mysterious reason an extreme diet was instrumental in bringing about this transformation. Of course it didn’t work and what is particularly horrible is that she died feeling miserably guilty of having failed so utterly.
Getting to know the new me
Just after my operation I found it very hard to look at my chest, not just because of the breast that was no longer there, but also because of the wound, which looked horrific at first. But I looked anyway, right from the start and so did my husband. That way you see it improving every day, which is nice. It also helps getting to know this new person, by making the things that scared you so at first become more and more familiar, until one day you realize they unsettle you no longer.
Chemotherapy started in December. What can I say – it was bad, but not all bad and not all of the time. I had lots of pills to stop me from being sick and I made good use of them. After the first round I became quite sick on Sunday. Monday morning it was even worse, so I called the NP and she arranged for extra medication to be delivered. It worked so well that I was able to walk our dogs for an hour that same afternoon. The first week after chemo I didn’t feel too well, there was a foul-tasting lump in my stomach that made me feel on the verge of throwing up sometimes, but in the following two weeks I always felt much better.
Hair: to have and not to have
On the evening of Christmas Day we were watching a movie on tv: Shoot to Kill, with Kirstie Alley. I remember the tartan shirt she wore and whenever I see a tartan now, I think of my hair, for that was when it started to come off. It had been looking funny for the past days, brittle, dull and colourless. And then all of a sudden I sat with a bunch of hair in my hand. I think my hair has started to come off, I said to my husband. What do you think? He thought so too and was very upset for me. I called my sister and said: my hair is coming off. She cried. Don’t cry, I said, you’ll make me cry too and I don’t want to. It will come back. When spring is here, my hair will come back. We all decided to just think of that – my hair coming back in spring.
I had already bought some hats and shawls. The day after Christmas I went to the hair salon, my husband along for support and had my hair cropped very short. He said it looked nice, but I wasn’t so sure. I put on one of my new hats and we went home. At first my daughter didn’t want to look at it, but finally her curiosity got the better of her. She said: you look just like a lesbian! And like grandpa too! Well, thanks for nothing. We laughed until we nearly fainted.
I had decided I would not wear a wig. The wigs I had tried on, felt very uncomfortable andI just couldn’t be bothered for those few months. Hardly any of the women I met during chemo wore wigs by the way. One of them told me she had only worn her wig two or three times because it was so itchy and irritating. After that, it had been sitting idly on its stand in the bedroom and eventually ended up in the dressing-up chest of her grandchildren.
I thought I looked horrible with no hair, but I looked at it anyway once a day. I made myself. I wanted to get used to it and somehow I did.
When I felt good we would go out, my husband and I having a nice dinner somewhere, or shopping with my daughter and my sister with her children, having lunch together, all very cosy.
I worried what it would do to my sister, me having cancer. We have a small family and depend upon each other very much. But she was wonderful, she gave me such tremendous support, she rose to the occasion and was an absolute rock.
I feared losing my hair would make me absolutely hysterical. I met a woman in the hospital who told me she had cried for a whole week and was still not quite over it after 3 weeks. But to my own amazement I didn’t become hysterical and I didn’t cry either. The only thing I could hardly bear was the itching of the hairs coming off, so I stuck my head under the tap several times a day to rub off the loose hairs.
I don’t consider myself a very brave person by any stretch of the imagination. I always thought I would never be able to cope with things like chemotherapy and cancer. But when it’s your turn, you just do what you have to do. I had sore eyes, blisters in my mouth and at times I was very, very tired. But I stuck with it and was happy nonetheless and still had fun.
And then suddenly it was over and we all started waiting for my hair to come back. It didn’t, of course. I stood in front of the mirror every day, scrutinizing my head, but nothing happened. It’s not coming back, I told my husband, it should have started by now, I’ll be bald for ever! But my hair decided to come back after all and in May 2008 I took off my hat for the last time. I decided not to dye my hair anymore; I quite like the colour and it feels good having my “own” hair.
It’s strange, looking back on that time. It was, as they say, the worst of times, but also the best of times. So many people were so absolutely wonderful, my family, friends, neighbours, colleagues, the doctors and the nurses. All in all, I think I have been extremely lucky.
And I have made some great new friends through my illness: Wilma, Marer, Crypto, Bram, Edward, jli, WeWee, Natalie.
Here’s to you guys, la’chaim!