Medical Forum / Diseases and Disorders / Cancer / April 2004
Attention Steph if you can,your opinion please on the diagnosis of my mother's lung cancer
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steve - 21 Apr 2004 23:57 GMT Hi Steph, First thanks for answering my other post,this post i would really apperciate your opinion on how my mother's lung cancer was diagnosed
A bit of background my mother is in her early 60's and has been smoking for 45+ years...Had a terrible cold about 9 weeks ago and couldn't shake off her terrible cough
About 7 weeks ago an x-ray showed a shadow on her right lung(hilum) A week later she was in for a Bronchoscopy/CT scan/Lung wash/Blood test and mucus was taken Now when the doctor performed the Bronchoscopy he said he couldn't see anything there,so couldn't take a biopsy... But from a little reading i have done i believe the hilum part of the lung is one of the best parts to have a shadow as a bronchoscopy can see this part?.Am i correct in saying this? Also i have also read just taking 1 mucus sample is pointless as they need to be taken over a 3 day period?.Is this again correct?
Anyway a week later the results came back inconclusive The lung wash was clear/CT showed no other shadows/Blood ok At this point the doctor precribed strong antibiotics as he thought the shadow may be an infection (10 days worth) But to come back in 3 week time for a CT guided biopsy
Now i thought this would raise my spirits but i talked to a nurse who told me about 50% of the cases she see's come back inconclusive And that it was still 50/50 my mother would have lung cancer Now at this point i was upset because i was thinking well my mother will not find out for another 3 weeks if she has cancer and these are 3 weeks she could be seeking treatment but the nurse said 3 weeks would not make a difference to the final outcome.Again is this a correct statement?,as i thought the earlier lung cancer is detected the better chance you have,so shouldn't it be the earlier treatment is started the better chance as well??
So 3 weeks later my mother had a CT guided biopsy and they got a good sample of the shadow.
1 week later the results came back as non-small cell lung cancer So now apart from fearing the worse i am also wondering could/should my mother lung cancer had been diagnosed earlier?? I mean i guess my main point is...a CT guided biopsy is far more likely to tell you if its cancer,so why do a Bronchoscopy in the first place?.I know CT guided biopsy is more risky but given the choice i think this should of been done first,do you agree?? Because not only have we lost 3 weeks taking the antibiotics,this has also put my mother in a bad situation mentally because when she was given the antibiotics and started feeling better she really believed it was a lung infection so to be told it was cancer was a bigger blow.
So what do you think was this the correct way to go about diagnosis lung cancer?Also my mother has have a bone scan,but this has been delayed a week (probably to due with money,we live in the UK and are using the NHS) So in total its now 4/5 weeks lost,so in you opinion could this affect the final outcome?? And finally what got be writing this post was of course the worry over my mother and maybe who knows looking for someone else to blame... But mainly because the 5 year survival rate in the UK is only 5% so we must be doing something wrong as its far higher in Canada and the US i believe
As i say i would really appreciate some feedback! Thanks Steve
Steph - 22 Apr 2004 02:48 GMT > Hi Steph, > First thanks for answering my other post,this post i would really [quoted text clipped - 14 lines] > Also i have also read just taking 1 mucus sample is pointless as they > need to be taken over a 3 day period?.Is this again correct? Mucus samples are just one test - they aren't conclusive on their own. It's quite common for a bronchospcopy to be negative in a patient with lung cancer. The scope can only get to the largest bronchi.
> Anyway a week later the results came back inconclusive > The lung wash was clear/CT showed no other shadows/Blood ok [quoted text clipped - 12 lines] > the better chance you have,so shouldn't it be the earlier treatment is > started the better chance as well?? 3 weeks makes absolutely no difference in non-small cell lung cancer.
> So 3 weeks later my mother had a CT guided biopsy and they got a good > sample of the shadow. > > 1 week later the results came back as non-small cell lung cancer > So now apart from fearing the worse i am also wondering could/should > my mother lung cancer had been diagnosed earlier?? See what I said above.
> I mean i guess my main point is...a CT guided biopsy is far more > likely to tell you if its cancer,so why do a Bronchoscopy in the first > place?.I know CT guided biopsy is more risky but given the choice i > think this should of been done first,do you agree?? Because a CT guided biopsy is more dangerous. It's good practise to do the least invasive tests first.
> Because not only have we lost 3 weeks taking the antibiotics,this has > also put my mother in a bad situation mentally because when she was > given the antibiotics and started feeling better she really believed > it was a lung infection so to be told it was cancer was a bigger blow. She very likley had infection as well.
> So what do you think was this the correct way to go about diagnosis > lung cancer?Also my mother has have a bone scan,but this has been > delayed a week (probably to due with money,we live in the UK and are > using the NHS) You had entirely the correct approach. The NHS doesn't waste money, but does what is best, generally.
> So in total its now 4/5 weeks lost,so in you opinion could this affect > the final outcome?? [quoted text clipped - 3 lines] > must be doing something wrong as its far higher in Canada and the US i > believe No, the survival rates for NSCLC are not significantly better in Canada or the US. Oft quoted, but mistaken.
> As i say i would really appreciate some feedback! > Thanks > Steve steve - 22 Apr 2004 09:20 GMT >3 weeks makes absolutely no difference in non-small cell lung cancer. Thanks for the reply,i guess my only comment on the above is what if my mother had turned out to have small-cell cancer? Also about the survival rates i thought they were 15% in the US/Canada and only 5% here in the UK Thanks again Steve
Steph - 22 Apr 2004 16:44 GMT > >3 weeks makes absolutely no difference in non-small cell lung cancer. > > Thanks for the reply,i guess my only comment on the above is what if > my mother had turned out to have small-cell cancer? It still wouldn't be an issue.
> Also about the survival rates i thought they were 15% in the US/Canada > and only 5% here in the UK > Thanks again > Steve The reported survival rates are higher in the US and Canada (and some of Europe) but, paradoxically, most of the difference is due to better data collection in the NHS..........
steve - 22 Apr 2004 19:14 GMT >> >3 weeks makes absolutely no difference in non-small cell lung cancer. >> [quoted text clipped - 11 lines] >Europe) but, paradoxically, most of the difference is due to better data >collection in the NHS.......... Right,thanks again for time This one is probably a stupid question but! My mother's sister had a tumor is her back,was the size of a tennis ball now the size of pea,thru chemo and radio... I know lung cancer is different but could it be that my mother's sisiter responded well to chemo/radio,chances are my mother would,what wth her have similar genes etc???
And i know i have been over this point before but what about giving patients the option to have a CT guided biopsy first instead of Bronchoscopy?.I mean a CT quided biopsy has a better chance of diagnosis,yes i know its more risky,but why not let the patient decide? Cut down on the inconclusive results which can wrongly build a person hopes up....
Steph - 23 Apr 2004 05:08 GMT > >> >3 weeks makes absolutely no difference in non-small cell lung cancer. > >> [quoted text clipped - 19 lines] > sisiter responded well to chemo/radio,chances are my mother would,what > wth her have similar genes etc??? A tumour shrinking from a tennis ball down to a pea has actually only reduced slightly. Tumours grow and shrink exponentially, not mathematically
> And i know i have been over this point before but what about giving > patients the option to have a CT guided biopsy first instead of > Bronchoscopy?.I mean a CT quided biopsy has a better chance of > diagnosis,yes i know its more risky,but why not let the patient > decide? Cut down on the inconclusive results which can wrongly build a > person hopes up.... For some cancers, a bronchoscopy is actually better...........
Gene Fuller - 23 Apr 2004 06:45 GMT To refresh, in March my wife was diagnosed with a lump in her breast, and as a result of a biopsy, it was declared cancerous and she had it removed. We were told it was not well differentiated, but that the margins were clear. It was ER and PR positive. They took 20 lymph nodes of which three were positive for cancer cells. We were told she was stage 2, and recommendations was for 4 treatments 2 weeks apart with Cytoxin and Adriamycin, followed by a similar set of treatments with another combination, but right now I cannot recall what. This was to be followed by 6 weeks of 5 day per week radiation, and then Arimidex for 5 years. She had also received a pretty good set of "selling" on a product called "Protocel" which is said to be an alternative treatment. She deliberated for the rest of March and the first half of April, then last week we talked with her Medical Oncologist again, got her questions answered, and she made an appointment to start chemo last Monday afternoon. About 11 A.M, she said very seriously, "I really don't want to do this". My reply was that if she really, really did not want to do it, if she had strong feelings against it, she probably should not do it, although my own advice would be to try the first treatment and see how it was. I tried to reassure her that I thought she was being overinfluenced by the horror stories, and anticipating and fearing the worst.
Her oncologist had told us that without further treatment her chance for survival (I think that was considering the follow up radiation as a given) would be about 80% for symptom free survival for 10 years, with hormone therapy (Arimidex) that would increase by about 4 more % and with Chemo it would increase by about another 2%. She was having a strong opinion that the probable dangers of the chemo were not worth taking for only a 2% gain in survival probability. She feared the danger of her immune system being irreversibly weakened, other cancers being caused and all the things that we had heard about horror stories resulting from chemo. She cancelled her appointment about an hour before her first chemo was to begin, and decided to do the radiation and Arimidex.
Now she has thought more calmly for half a week, and is beginning to think she let her fear cause her to make a poor decision. We will talk with the radiation oncologist on Monday, and I want us to talk with the medical oncologist again, but I am wondering why the chemo was to be done first followed by the radiation. Does it matter? If she starts the radiation, is it too late to change her mind and do the chemo? How late _IS_ too late to start chemo. I heard her tall a friend that the decision she made Monday not unchangeable, and that she might later decide to get the chemo. I told her today that I think that if there is a possibility that she will decide she wants chemo, now, not later, is the time to do it. Am I right or wrong? Does she have that option?
She is a bright, and intelligent woman, and I would not make a decision for her if I could. But she is reacting partly out of fear at this point, and I am not at all positive that the fear is all that well founded. Do anyof the knowledgable people here, Steph, Tim, et al, have words of wisdom, experience and advice for us?
Thanks,
Gene
Gene Fuller - 23 Apr 2004 06:55 GMT I should have added that her age is 59. I think that makes a difference in recommendations for treatmentt.
Gene
Steph - 23 Apr 2004 07:09 GMT > To refresh, in March my wife was diagnosed with a lump in her breast, and as > a result of a biopsy, it was declared cancerous and she had it removed. We [quoted text clipped - 49 lines] > > Gene Nobody knows how soon chemo should start, but most oncologists like to get it started within a couple of months.
What you are describing is stage 2 breast cancer. 5 year survival with appropriate treatment is about 65%, not 80%. 10 year would be lower.
Without appropriate treatment, there are very few good stats to guide prognosis, but many oncologists would argue that what data there is suggests that chemotherapy and radiotherapy reduce the odds of recurrence by about 1/3rd
So that's a roundabout way of saying that survival at 5 years without appropriate treatment might be 40-50%
Chemotherapy is clearly of more benefit in pre-menopausal women, and hormone therapy of more benefit in post-menopausal women.
If she is afraid of the chemo, she shouldn't be. The side-effects are perfectly manageable for most women.. It doesn't "irreversibly damage" the immune system.
The worst complication of treatment is failure to cure a curable cancer.....................
Gene Fuller - 23 Apr 2004 07:33 GMT > > To refresh, in March my wife was diagnosed with a lump in her breast, and > as > > a result of a biopsy, it was declared cancerous and she had it removed. Snip
Steph replied
> Nobody knows how soon chemo should start, but most oncologists like to get > it started within a couple of months. [quoted text clipped - 19 lines] > The worst complication of treatment is failure to cure a curable > cancer..................... Thank you, Steph,
I may have been remembering the figures wrong. I am sure that I remember that since she is post-menopausal, the numbers he gave were that the hormone therapy would add 4% to the survival rate probability, while the chemo would add two. I know his figures supported your statement about the difference for per-menopausal as compared to post-menopausal women and the effect of the treatments. I did tell her that 2% was not a big gain, _unless_ she was one of the 2%,
I believe that the data he used had the survival rate without either treatment higher than the figure you gave, so he may have been looking at different studies. It is hard for me to get a handle on these things, since is so new to my experience. I am pretty sure that he did give the final number of 80% if she did all that he was proposing.
A related question, if she starts the radiation, does that affect her ability to later decide to accept the Chemo? From your experience would you consider it inappropriate for her to accept only the radiation and hormone therapy? (I hope that is not an improper question. If it is, you need not answer it, of course.)
Again thank you.
Gene
Steph - 23 Apr 2004 08:31 GMT > > > To refresh, in March my wife was diagnosed with a lump in her breast, > and [quoted text clipped - 56 lines] > > Gene Gene, I don't currently treat breast cancer, but have done so a lot in the past. If she only had a lumpectomy, radiotherapy is mandatory, or there is a very high risk of local recurrence. If she had a mastectomy, radiotherapy is less important, unless there were high risk features in the path. Adjuvant systemic therapy (hormones and chemo) reduce the "odds of recurrence" by about a 1/3rd
Radiotherapy doesn't stop her having chemo later, but most breast oncologists like to get the systemic therapy started earlier rather than later.
As always, my advice is find an oncologist you trust, and do what they advise............
Gene Fuller - 23 Apr 2004 09:16 GMT > > > > To refresh, in March my wife was diagnosed with a lump in her breast, > > and [quoted text clipped - 80 lines] > As always, my advice is find an oncologist you trust, and do what they > advise............ I appreciate your thoughts and your advice, Steph.
Gene
J - 25 Apr 2004 17:24 GMT > <snip>She is a bright, and intelligent woman, and I would not make a decision > for > her if I could. But she is reacting partly out of fear at this point, and I > am not at all positive that the fear is all that well founded. Do anyof the > knowledgable people here, Steph, Tim, et al, have words of wisdom, > experience and advice for us? Hello Gene, I just wanted to point out that Tim does not read alt.support.cancer
I think he's got his hands full on alt.support.cancer.breast So that's the explanation as to why you've not received replies from Tim. However, I think you've discussed these issues on alt.support.cancer.breast before? The point of my post is (for future possible purposes): If you want input from both Steph and Tim, you would have to crosspost your post/question to both newsgroups. Okay? Best, J
Gene Fuller - 25 Apr 2004 22:21 GMT Thanks, J
(Top posted since nothing new added.
Gene
Snip
> Hello Gene, I just wanted to point out that Tim does not read alt.support.ca?
Snip again
Jerome G. - 24 Apr 2004 06:49 GMT > > >> >3 weeks makes absolutely no difference in non-small cell lung cancer. > > >> [quoted text clipped - 23 lines] > reduced slightly. > Tumours grow and shrink exponentially, not mathematically Steph, I'm confused about this point. Surely a reduction of that order is a big improvement (if a cancer has reduced to several times its original size like that). Isn't reduction of tumour mass important in relation to prognosis?
J.
Steph - 26 Apr 2004 18:23 GMT > > > >> >3 weeks makes absolutely no difference in non-small cell lung cancer. > > > >> [quoted text clipped - 30 lines] > > J. Partial responses may lead to an improvement in symptoms. The only kind of response which can lead to cure or survival improvement is a complete response .............and many of those don't.
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