Sunday, 23 October 2005

A Tale of Two Titties

October is Breast Cancer Awareness Month – still for a few more days. I am aware. Are you?

There’s no history of breast cancer in my family. That might be, of course, because many female members of my family didn’t live to an age when they might have developed it – thanks to rampaging Cossacks and assorted Nazis, but, for nearly the whole of February 1999, I believed I had it. I’d had cancer of the eye nine years before and I was sure it had caught up with me again. It went like this:

Thursday 28th January: Noticed a strange stain on my T-shirt, level with my right breast. Saw my GP straightaway, then later a consultant at the Cromwell Hospital (I will not apologize for going private: that specialist was seeing me after working all day in the NHS). Mixed messages: it’s absolutely nothing – probably a papilloma; you must have an ultrasound and a mammogram first thing tomorrow morning.

Friday 29th January: First mammogram. The most excruciating pain I had ever endured so far (and my pain threshold is very high). Mammograms save lives, but don’t let anyone tell you they’re painless: they’re not if you’ve got very small breasts and the machine doesn’t have much to squeeze; mine kept popping out and getting squashed in the wrong place. Of course, I misread the signs again (like, nine years earlier, when the person doing the ultrasound on my eye had suddenly stopped chatting): this time the young nurse went out of the room and came back with an older one; they told me some fib about lunch break. Yeah, right!

Saturday 30th January: First thing in the morning, the consultant announced they’d found multiple calcifications in my right breast and, according to the Marsden, it was most probably cancer, but, not to worry, he would remove those calcifications with a wire hook while I was having a mammogram and…. I heard the word “mammogram” and said, “Wouldn’t it be easier to just cut it off?” “Erm, yes, of course, but there’s no need…” I stopped listening after that.

A little later, after he’d explained – and drawn on my breast – how he would cut me up, I left the tiny consulting room on my own. My partner was asked to stay behind on some pretext and was told that, in fact, they believed I had cancer in the other breast as well. I managed to find out a few minutes later: my brain wasn’t working very well at that point, but I wasn’t that stupid!

Mr L. was going on holiday somewhere exotic so he wouldn’t be able to perform the mastectomies until the end of the month. Did I want someone else to do it? No. I think they probably expected me to change my mind in the meantime, but I didn’t. From the moment I knew there was something the matter with them, i.e. on the way to the GP’s surgery, two days previously, my breasts had become the enemy; things that might kill me and I didn’t want anything to do with them any longer; I could never feel the same about them; I didn’t want to be constantly afraid of them.

I spent three weeks on Valium, very calm and contented, planning my death. I had a double mastectomy on 26th February. Two days later, Mr L. turned up brandishing a sheet of paper: it was the histology report. It said there was no trace of cancer anywhere. They call it a false positive. I call it a miracle.

I have never regretted my decision to have mastectomies. Sure, it would have been nice if I hadn’t had all those lymph nodes removed from both armpits, which makes me vulnerable to lymphoedema at any time in the future, if I’m not careful, but apart from that, no, no regrets.

I saw a documentary recently about Marsha Hunt, who's had breast cancer. She’s amazingly resilient, but she was criticized for being so relentlessly upbeat. They said other women might feel guilty for not being so strong and so optimistic. There’s some truth in that. People go on about “battle” and “fight”. Yes, you’re fighting a disease. Yes, you’re fighting for your life, but there is no shame in not being strong; there is no shame in giving up or losing that fight.

Anyway, I want to slap anyone who doesn’t advise women properly and clearly; anyone who tells women what they want to hear rather than the truth. How many women have died because they weren’t told, “If you only have a lumpectomy, the cancer will probably come back and you will have to have a mastectomy anyway, but by then the cancer will be more advanced and therefore more difficult to eradicate.”?

And what’s with reconstruction? It so often leads to complications. You’ve got cancer; why would you want to subject yourself to more – unnecessary – operations? I just can’t understand it. I won’t even say what I think of women who take the opportunity to increase their bust size.


By the time cancer is diagnosed, your body has to get rid of one billion cancerous cells. If, g-d forbid, it happens to you, don’t say, “I’d rather die!” That’s what you’re saying if you’re not doing your utmost to eradicate the cancer from your body – with the most radical means you have at your disposal.

[I owe the title of this post to the most hilarious show on BBC Radio 4: I'm Sorry I Haven't a Clue. I hope it doesn't offend anyone.]

14 comments:

  1. Dear J! I am so glad you took the right decision and that you are here with us.

    I maybe at risk. My aunt passed away after having gone through with everything under the sun at the age of 32. My maternal grandmother survived after her ops but she was a classic reminder that we could be next. I am acutely aware and check regularly.

    Thank you for this great post and reminder and I also urge women who are in denial (like my cousin) who knows her risks after her mother's premature death but simply refuses to do any tests at all.

    Hope you are well.

    ((((((((J)))))))))

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  2. Thank you so much for sharing that story, J. That must have been harrowing. It angers me that the diagnostic procedure (mammogram) is so torturous. I have very small breasts too and fear my first mammogram. I can't believe the procedure itself doesn't cause tissue damage.

    I think you are right to be proud of your decision. It shows that your survival instinct won't let you down. People who say they'd rather die than lose part of their body probably haven't been very close to death. That survival mechanism kicks in something fierce.

    Have you read Ken Wilbur's book Grace and Grit, about his partner Treya's experience with breast cancer? One thing that outraged him through the whole process was how chemo and other approaches have a coin's toss chance of working; Wilbur got the feeling that these things are offered more as a way of placating patients, calming them into thinking they're making progress, "fighting the good fight," when really they're just biding time and don't know it. (I don't know if he's right. He's arrogant as hell and annoys me. But I liked reading the book for Treya's story.)

    As far as reconstruction goes, I'm ambivalent. Watching my body change with pregnancy has aroused in me a profound nostalgia for the body I had before and didn't appreciate enough. So I can understand people wanting to do whatever is necessary to "be themselves" again. (Going larger to become some porn fantasy version of your previous self, though... yecch.) At the same time, though, I LOVE it when women choose not to reconstruct, especially the ones who celebrate and display their new bodies. Those are the kind of women I like to get to know better, the ones I like to hang out with. :-)

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  3. A very moving post - you are a strong woman, J, and I salute you.

    Winterwheat - I've read others of Wilber's books and I agree with you about his arrogance - but I do believe he's right about chemo & other procedures offered to fight some cancers. Having watched a close friend die of primary liver cancer, I can attest to the fact that her doctors - the best doctors in the field - most of the time had no inkling what was going to happen. Her original diagnosis was 6 months or less to termination; she lived 4 years, three of those after "all treatment options had been exhausted". They never said her cancer was in remission - and they had no idea why she lived so long. Her lifestyle, however, was horribly altered by the after-effects of surgery, chemo and radiation. To this day I wonder how she would have fared had she simply refused treatment from the outset.

    I had my own breast cancer scare this past spring. I still have to face the next hurdle of a 6-month follow up (next month), hoping I chose to believe the right doctor. I hope I never have to face the kinds of decisions my friend Pat, and our J. here, had to face.

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  4. I’m so sorry about your aunt, N: 32 is so dreadfully young. I’m also sorry you’re living with that increased fear. Still, nothing is inevitable and the fact that you’re aware means that you’re armed. I wish you the best of health for a very very very long time. :-)

    K: had I not believed absolutely that mammograms were totally painless, I would have taken a painkiller or some sort of sedative beforehand. I would have been prepared mentally and the whole thing might have been, in fact, less painful than I expected it to be.

    I didn’t think I had a choice. I wasn’t prepared to discuss anything; to somehow "haggle" over how much of my body could be sacrificed. I don’t understand people who do. Once you’ve heard about the “one billion cancerous cells” floating around in your body, you don’t try and save this or that bit of flesh, especially when it’s not a vital organ. And maybe even when it is.

    I haven’t read the book you mention. I will try and track it down. It sounds very interesting. We all know people who’ve survived for many years after having treatment, but there must be a lot of cases where, as you say, treatment is offered because medics don’t want, and very often are not allowed (by the patient and their family) to say, “Sorry, there’s nothing we can do for you.”

    I remember saying once that my breasts had already started sagging anyway before the op (how such small breasts can sag is beyond me, but there you are) so at least I wouldn’t see them getting worse. LOL! Had I been young, married or looking for a mate, etc. and about to lose one breast and therefore be lopsided, it’s quite possible I would have wanted to have reconstruction. As it was, it didn’t matter a jot. Apparently the nurses who were looking after me were waiting for me to suddenly start mourning my breasts and be depressed about their loss. It never happened. They thought I was some kind of freak. Just after the op, I wanted to show my scars to anyone who expressed any curiosity at all (and to some who didn’t too). They were so neat and straight (my surgeon’s famous for his needlework). For a moment, yesterday, I toyed with the idea of posting a pic of my chest to go with this post. Hmmm… maybe not.

    D: primary liver cancer is fairly rare, I believe. Liver tumours are usually metastases – and the end of the line because one can only treat primaries. It’s amazing your friend lived so long. My feeling is that she wouldn’t have survived without treatment, but who knows.

    I remember about your scare. I wish you all the best for your check-up next month. :-)

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  5. I too echo the voices of those women who applaud your decision, and am happy that you have shared this story with women during breast cancer awareness month. It is truly inspirational.

    As a side note, I had a mamogram two weeks ago, and am waiting for the results. My favorite line is to tell the technican that my breasts are not to be treated like a side of beef!

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  6. In my experience, since doctors really don't tell you the truth, paying attention to the words and expressions of nurses and radiologists etc is vital.

    My father died last Easter of secondary liver/primary lung cancer. The doctors went trhough their usual rigmarole of 'enlarged liver', 'shadow on the scan', 'possible tumour', 'definitely cancer', 'terminal, six months to live'. (This process took about 3 weeks start to finish.) Then they began talking, on Good Friday, about sending him home and about chemotherapy. We all panicked: my father felt happier and safer in hospital. One doctor actually told him he was selfish for keeping a bed from someone who could be cured! The staff nurse on duty noticed our panic and took us to another room. The doctor was coming back next Tuesday, after Easter, she said. By Tuesday it would be apparent there was no question of going home. In her experience, looking at my father's condition, 3 weeks was more likely than 6 months left. Or 10 days. He in fact died on the Monday night, wondering why he felt so unwell that evening (he hadn't been in too much discomfort until then, miraculously).

    Looking back, while the doctors were misleading us with what MUST have been deliberate false hope since he was actually a week from death, all the clues were there in the nurses' behaviour. Even before the final scan, they stopped encouraging him to 'try to eat a little'; it became 'here's some liquid food, but don't worry if you can't manage it'. The radiologist was very quiet during the second scan, having been all chatty in the first one. One young temp nurse was a bit snappish to my father when he asked for something she thought was beneath her to do (pass the phone or something); within minutes she was removed by the staff nurse and came back all chastened with an apology. On the last day they made us sign something to say we understood that he was dying; we realised later that it was so they could increase his pain meds without being accused of euthanasing him.

    All the signs were there. But you see what you wantg to see. When it happens to me, I will know where to look.

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  7. The reconstructive surgery does seem sort of a horrible idea. They encouraged my mother to have the implant put in at the same time she was having the radical mastectomy on her right side. Well, what do you know, the damned implant delayed her healing so long that she had to go back into surgery so they could take it out. It's just too much trauma to put the body through purely for cosmetic purposes, when the body needs all the resources it can get to heal itself! I was sort of angry that they would even suggest that this combination of procedures was appropriate. As soon as they took the implant out, she healed up almost immediately. They'd led her to believe that it would be no problem, that it was perfectly normal, etc. Well, I can't be too angry. After all, they did cure her. She's in complete remission now. But I do think that doctors misrepresent things to patients sometimes. Thank goodness for the Internet. I think everyone should do their best to educate themselves about their options. It's too tempting to trust the doctors.

    I've told this story before, but the first time my mother had breast cancer, in 1995, she went in to her regular doctor complaining about a weird pain in her breast, and her doctor looked at this woman in her 50s...and he told her to take aspirin. No mammogram, nothing. The pain persisted and she felt a lump, so she went for a second opinion three months later and it turned out to be cancer. The lesson again, don't trust doctors blindly!

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  8. B: I hope the results of your mammogram turn out to be completely ok. :-)

    L: the story about your father is heartbreaking. It’s such a blessing he wasn’t in too much pain. I’m not sure you would notice the signs if, g-d forbid, it happened to you. I should have understood why the young nurse had gone to fetch a more experienced one since I’d realized about the ultrasound operator – in retrospect, of course, but I didn’t. I think one just doesn’t want to see certain things.

    T: your mother’s GP’s behaviour is unforgivable. Although, as I heard a specialist say on the radio the other day, breast cancer isn’t an emergency, any delay can’t be good. I’m so sorry for what happened to your mother – and glad she’s ok now. Her ordeal was so unnecessary.

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  9. I think I've found a search engine with a sense of humor - I was actually looking for articles on how to cook, and here I am on a site called A Tale of Two Breasts. There's probably an electronic explanation for this and I have enjoyed the experience, so no harm done. Have a nice day Bela - if that's your real name :0)

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  10. I'm not quite sure whether this last comment is spam or not, but it's funny. A clue: I'm not a chicken.

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  11. j, I have no frame of reference for what you've gone through in this regard. I can only tell you that I'm very glad you are here with us today. ♥

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  12. Thank you, M! I would never have met you otherwise... I'm very glad I am still around.

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  13. Spam mistakes woman for chicken.

    Ha!

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