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Medical Forum / Diseases and Disorders / Breast Cancer / August 2005Membership claim
Until now I have been posting to this group under false pretences, as neither my wife nor myself are having treatment for cancer. I now claim full membership, but fortunately at a less senior level than I feared. Visited hospital today after recent tests, to arrange treatment. Omens were good; for the first time on a hospital visit, today transport was nearly normal, roads mostly open, and business as usual in hospitals. Wife's symptoms worried me: itching breast in April, swollen left breast, arm, and leg; pain in left groin when walking. Inverted ?is this the right word?) left nipple. This sounds to me, with Internet-fresh wisdom, like uber-nasty inflammatory breast cancer (IBC). Over the last couple of weeks she had a battery of 9 tests. One of them was a new, experimental, technique for 3D-imaging the breast: infrared lasers illuminate the breast, scattering and transmission are measured, and you end up with a picture of the blood vessels, which aren't shown by ultrasound or X-rays). The advantages of a teaching hospital associated with a University: not only did she have the benefit if a new technique, guaranteed harmless, but they actually paid her for volunteering! Also she's going to another large hospital (which there shouldn't be any trouble getting to, I think) o volunteer for another clinical trial. {By the way, these trials seem to be beneficial, or at worst harmless. But I read an interesting newspaper article a few weeks ago which suggested that participating in clinical trials is really a civic duty, like jury service.] Anyway, to cut to the chase: they didn't use the IBC word, but wouldn't necessarily do so (it is BC with certain characteristics). They said that the cancer was oestrogen-sensitive, so would respond well to medicines (pills to take at home, not called chemotherapy). No hair loss, etc. Cancer is not curable, as has spread to bones, but should respond well to medicine. Mastectomy useless, as has already spread elsewhere. Cancer seems to be progressing slowly, as usually happens with people of a certain age. Can, hopefully, be controlled for years. So, either the outlook is not too bleak, or they are sugaring the pill. I went along to all visits, feeling like the spare wheel on a car without a puncture, but wife says this made a big, positive, difference. (This note added for men who are wondering whether or not they should tag on, as I was trying to find out here a couple of weeks ago). (I hope spelling of medical terms is OK, I have a few words that it looks like I should add to my spellchecker, as they'll be needed). Best wishes,  SignatureGabriel > Until now I have been posting to this group under false pretences, as > neither my wife nor myself are having treatment for cancer. I now claim > full membership, but fortunately at a less senior level than I feared. I don't know, stage IV is pretty "senior" here. You can't get much more serious than terminal. I understand what you mean though, that at least it is a normal, slow variety, not the quick spreading IBC type. If one is reasonably senior in age, then the fact that it is terminal becomes less significant, partly because it tends to spread more slowly, and partly because you have less life left to lose anyway, and are more at risk of losing it to something else. > Anyway, to cut to the chase: they didn't use the IBC word, but wouldn't > necessarily do so (it is BC with certain characteristics). They said > that the cancer was oestrogen-sensitive, so would respond well to > medicines (pills to take at home, not called chemotherapy). Known as hormone therapy. Usually Femara or Tamoxifen. Did they check her HER2 status? I presume if they did not mention it, that it was negative. > Cancer is not curable, as has spread to bones, but should > respond well to medicine. Mastectomy useless, as has already spread > elsewhere. Cancer seems to be progressing slowly, as usually happens > with people of a certain age. Can, hopefully, be controlled for years. > > So, either the outlook is not too bleak, or they are sugaring the pill. Well, maybe a bit of both. The prognosis depends on the detailed pathology results, but with present treatments, say a ten year survival would be the exception rather than the norm for a stage IV patient. On the other hand, there is a lot of new stuff in the pipeline and so we can look forward to better prognoses in the future, so it could be she could possibly look forward to a fairly normal life expectancy. But I think that is at the less likely end of the probabilities. > I went along to all visits, feeling like the spare wheel on a car > without a puncture, but wife says this made a big, positive, difference. > (This note added for men who are wondering whether or not they should > tag on, as I was trying to find out here a couple of weeks ago). I'm sure it is always helpful. Someone was talking about this on the radio today, explaining how she went along to her sister's diagnosis of breast cancer, and how, once her sister had got over the initial shock of discovering she had cancer, she wanted to recap the rest of what the consultant had said afterwards, which she had been in no state to take in. You really do need someone along to have an independent memory of what has been said, and to remind you to ask all the questions you planned beforehand. Tim Jackson Thanks to Tim Jackson who responded to a posting of mine: ... snip lots of useful stuff ... > > Anyway, to cut to the chase: they didn't use the IBC word, but wouldn't > > necessarily do so (it is BC with certain characteristics). They said [quoted text clipped - 4 lines] > Did they check her HER2 status? I presume if they did not mention it, > that it was negative. It wasn't mentioned, and I wouldn't know what it was. But I will know what to look for now. (after some Googling) checking my notes, when I asked about Herceptin, they said that the cancer was not Herceptin- sensitive, but they would use drugs to reduce oestrogen. They mentioned a couple of drugs, which I scribbled as I understood them (an overview is OK, we are going for more consultations soon; sounded like lapatinib and lapsebol; even if I did get the names write, I can't decipher my squiggles). For now, hormone therapy only, followed by chemo if and when hormone therapy stops working. (Later) I now know a little about HER2: "approximately one in five patients with metastatic breast cancer is HER2-positive and ...likely to have a more aggressive form of breast cancer. Herceptin is a new option for treating HER2-positive patients" (quote much trimmed). So HER2- positive is bad news, but it would appear that wife isn't positive. > > So, either the outlook is not too bleak, or they are sugaring the pill. > > > ... say a ten year survival would be the exception rather than the norm Thanks for that comment (real thanks, not sarcastic). We were expecting bad news, chemo, surgery, hair falling out, etc., so ended up elated at the news that this was "just" incurable metastasised cancer, no chemo, no surgery, no radiation, just pills and monthly hospital visits. I need to keep my feet on the ground, but don't think I'll tell wife, at least for now. Over the years she has always spoken of keeping bad medical news from seriously ill people, reassuring them they're going to get better when they won't. So I must presume that she would prefer not to know too much bad news. Must also bring our adult children into this. ... Best wishes, SignatureGabriel > They mentioned > a couple of drugs, which I scribbled as I understood them (an overview > is OK, we are going for more consultations soon; sounded like lapatinib > and lapsebol; even if I did get the names write, I can't decipher my > squiggles). For now, hormone therapy only, followed by chemo if and when > hormone therapy stops working. Lapatinib is a new drug which is in clinical trials. It works a bit like Herceptin, but targets a different receptor. The indications are that, like Herceptin it is useful in a minority of cases, but not spectacular. The other I don't recognise. > (Later) I now know a little about HER2: "approximately one in five > patients with metastatic breast cancer is HER2-positive and ...likely to > have a more aggressive form of breast cancer. Herceptin is a new option > for treating HER2-positive patients" (quote much trimmed). So HER2- > positive is bad news, HER2 positive would be bad news if it were not for Herceptin. That rather levels the playing field or even tips it the other way. but it would appear that wife isn't positive. > It would appear so. > Over the years she has always spoken of keeping bad medical news from > seriously ill people, reassuring them they're going to get better when > they won't. So I must presume that she would prefer not to know too much > bad news. Must also bring our adult children into this. This is a complicated issue. I strongly believe that most patients and relatives are best kept informed of the reality of the situation. I believe that hiding bad news is protecting the bearer of the news more than the recipient: it is an excuse for not facing the painful duty of imparting bad news. On the other hand I do recognise that in some situations, some people may not have the time or mental energy or awareness to cope with the change in their situation, and that trying to "bring them up to speed" on the nature of their situation would be unhelpful. So if she is of sound mind, and is likely to have to cope with her condition for several years, it is best that she knows the truth. The trouble with lying about the inevitable is that it is inevitable you will be seen to have lied, and trust in you will be degraded. If she has some idea of how much life expectancy she has, then at least she can plan around it, make sure her will is up to date, and not put off things she wants to do until it is suddenly too late. Terminal cancer is a slippery slope, the natural response to feeling unwell is to defer things until you feel better, but with mets you are only going to get worse, and anything deferred falls off the end, it is deferred until you are dead. It is important to recognise this and adjust your attitude accordingly. Tim Jackson Hi, Gabriel - Didn't get a chance to welcome you but have read a few of your posts here. I agree with everything Tim said, mainly because he's a bit more level-headed than me most of the time ;-) I am puzzled by one thing, though. I've never seen a Stage IV diagnosis where the oncologist didn't recommend chemotherapy. Stranger things have happened, though - maybe I missed something somewhere. Good luck - and again, welcome. I think you've found a pretty good group ;-) > I am puzzled by one thing, though. I've never seen a Stage IV > diagnosis where the oncologist didn't recommend chemotherapy. Stranger > things have happened, though - maybe I missed something somewhere. With initial diagnosis at stage IV, there's a pretty good argument for the same approach to chemo as with a stage IV recurrence - hold your fire until you see the whites of their eyes. That is to say you get the most palliative bang for your chemo buck by waiting for symptomatic soft tissue mets. It wouldn't do anything to palliate her bone mets symptoms. But you are right, not everyone would agree, and there is a strong temptation to be seen to be "doing something about it". Tim > With initial diagnosis at stage IV, there's a pretty good argument for > the same approach to chemo as with a stage IV recurrence - hold your [quoted text clipped - 4 lines] > But you are right, not everyone would agree, and there is a strong > temptation to be seen to be "doing something about it". That's an interesting take on things, Tim - might as well wait until something's threatening you before you start shooting at it. I don't recall seeing a medical oncologist take that approach though - seems to me it'd be a hard sell to a new patient ;-) cheers - >>With initial diagnosis at stage IV, there's a pretty good argument for >>the same approach to chemo as with a stage IV recurrence - hold your [quoted text clipped - 9 lines] > recall seeing a medical oncologist take that approach though - seems to > me it'd be a hard sell to a new patient ;-) It was the approach taken by my wife's oncologist after she progressed to Stage IV. It does take a bit of explaining, but it does make sense in the palliative care scenario. It's also easy in commercial medicine to use the patient's enthusiasm to help "boost the doctor's retirement fund", as Anne T would put it. Tim Many thanks to Tim and Allen for much useful information about my wife's case. (I won't copy full details here, as I assume that anybody can go back in the thread; if anyone would prefer me to quote comprehensively I will.) She will be on letrozole. http://www.cancer.gov/ say: "An anticancer drug that belongs to the family of drugs called nonsteroidal aromatase inhibitors. Letrozole is used to decrease estrogen production and suppress the growth of estrogen-dependent tumors." She will also be on either placebo or GW572016: "A substance that is being studied in the treatment of cancer. It belongs to the family of drugs called ErbB-2 and EGFR dual tyrosine kinase inhibitors. Also called lapatinib." Allan: I am puzzled by one thing, though. I've never seen a Stage IV > diagnosis where the oncologist didn't recommend chemotherapy. Stranger > things have happened, though - maybe I missed something somewhere. The impression I got was that these drugs would be used for as long as they were effective, and chemo would be started if and when drugs were not enough. > Good luck - and again, welcome. I think you've found a pretty good > group ;-) Thanks, and thanks, and yes indeed. Unfortunately I do indeed seem to be a senior member from day one. All Tim's comments make good sense, but I have nothing to add to most of them. I will get together with our adult son and daughter and bring them in to any degree they wish. Maybe I'm being a bit Darwinian about this, but I sometimes think that, in case of disagreement, they should prevail over me, as they are blood relatives of their mother. Though, as there are 3 of us, the issue may never arise. On the issue of to tell or not to tell: perhaps at some appropriate moment I may ask her if she wants us to go into all the technical details. Thanks again, and best wishes, SignatureGabriel > She will be on letrozole. http://www.cancer.gov/ say: "An anticancer > drug that belongs to the family of drugs called nonsteroidal aromatase > inhibitors. Letrozole is used to decrease estrogen production and > suppress the growth of estrogen-dependent tumors." Yes, fine, that's the same class as Femara. > She will also be on either placebo or GW572016: "A substance that is > being studied in the treatment of cancer. It belongs to the family of > drugs called ErbB-2 and EGFR dual tyrosine kinase inhibitors. Also > called lapatinib." Yes, that's the one. > Allan: I am puzzled by one thing, though. I've never seen a Stage IV > [quoted text clipped - 4 lines] > they were effective, and chemo would be started if and when drugs were > not enough. That would be normal in my view. Did anyone explain the principles of palliative care to you? I realise I am talking about that without defining it. It is the point of difference between treatment of primary cancer and metastatic disease. In the primary case we are trying to cure the patient, so use a highly aggressive strategy and concentrate a lot of effort on things like early detection, which improve the chances of a cure. Once metastasis has occurred then the chances of a cure are minimal, and the approach changes. Now we are concentrating on quality of life. We are trying to slow the progression of the disease and above all minimise debilitating symptoms for as long as possible. So rather than looking at the effect of a treatment on the cancer, we look at its effect on the symptoms. This is palliative care. In the example of chemotherapy, if you use it early you may delay the onset of symptoms somewhat, at the cost of some quality of life while it is still good, but if you wait until symptoms appear you can often remit the symptoms for a longer time. (Although to be fair we are only talking about a gain measured in months or weeks on average, but rare cases like Allan's Deborah get years.) Also, if things turn out to deteriorate rapidly, (as my wife did) then you have avoided prescribing an unnecessary treatment which would have impacted the quality of what little life did actually turn out to remain. Tim I have had years. I hope the average gains are increasing since when Tim and his wife had to deal with this. What is also changing is the approach to the use of anti-estrogen treatments, thus using them in a more frontline manner. So, Gabriel, shoot for years... Chris > > She will be on letrozole. http://www.cancer.gov/ say: "An anticancer > > drug that belongs to the family of drugs called nonsteroidal aromatase [quoted text clipped - 46 lines] > > Tim > I have had years. I hope the average gains are increasing since when Tim > and his wife had to deal with this. I hope so too, I am sure they are. But chemo regimes haven't changed very significantly, (my wife had Taxol, and Arimidex) so the statistics for the benefit of chemo must be still be fairly valid. There is a very wide range of survival times ranging from a few months to many years, and so it is very hard to predict for any individual. > What is also changing is the approach to the use of anti-estrogen > treatments, thus using them in a more frontline manner. Well Tamoxifen has been prescribed for 30 years or so, so that hasn't really changed, but aromatase inhibitors are relatively new and their early use that is now coming in should produce some improvement in the statistics. I suspect that the biggest improvement in survival in the last decade will have come from Herceptin. The new drugs that are starting to appear from the genome work hopefully will produce a spurt of progress in the next decade or so. > So, Gabriel, shoot for years... I would say hope for the best, but prepare for the worst. Tim I am sorry to have missed the original post. Around here, estrogen positive Stage IV is often first managed with anti-estrogen treatments as much as possible. Chris > Hi, Gabriel - > [quoted text clipped - 10 lines] > Good luck - and again, welcome. I think you've found a pretty good > group ;-) Again, many thanks to those who responded. I appreciate that much of this useful information has been gathered through great pain. [I will try to respond to several messages in one posting to minimise fragmentation of the discussion, and will only quote the bits I'm responding to. If it's considered rude not to reply individually, please let me know. I come from the old days when "wasting bandwidth" was the cardinal Internet sin.] Tim said: It's also easy in commercial medicine to use the patient's > enthusiasm to help "boost the doctor's retirement fund", as Anne T > would put it. I've often heard this opinion, and can quite believe it. ... Tim: Did anyone explain the principles of palliative care to you? > I realise I am talking about that without defining it. The term hasn't been used at the hospital yet. They are trying to leave us with a rosy view -- we left the last appointment in very good spirits thinking that it wasn?t as bad as we had first thought. At the hospital they speak of slowing and of reducing, but not of curing: palliation without the word. === Chris said: I have had years. I'm delighted to hear of your success. I hope you have many more. > I hope the average gains are increasing since when Tim and his wife had to > deal with this. > What is also changing is the approach to the use of anti-estrogen > treatments, thus using them in a more frontline manner. Yes, they were very strong on hormone therapy. > So, Gabriel, shoot for years... Will do. Thanks again, -- Gabriel |
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