Have you declined chemotherapy and/or tomoxifen?
Hi...I am newly diagnosed with breast cancer. It is Stage 2...the lump was 1cm and 1 lymph node was positive but there is no cancer anywhere else. I had a lumpectomy and axillary lymph node dissection (17 nodes). I will be meeting with my oncologist on April 20th and I know he's going to want me to do either chemotherapy or tomoxifen. I'm wondering if anyone here has gone AMA? At this point I'm ready to agree with radiation, but I don't know if I'm comfortable with further treatment beyond that. I'm doing a ton of research so that I can make an informed decision and would appreciate any input. Thanks!
Thank you to everyone for your input...it has been so helpful! I should add that I am 37 years old and have not had children yet. Having children is very important to me and I don't want to go into menopause with chemo.
Comments
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If the cancer is in your lymph nodes they usually suggest chemo. Remember, the lymph nodes are only one mode of travel for cancer cells. And not to scare you (although I am sure you already are) but we are relying on tests that may or may not be seeing everything. So, when you are making your decision, I would suggest relying on your own research AND the imput from your doctors.
It is a good idea to get a copy of your pathology report and google all the terms that are in there. There is so much more info in these reports than lymph node involvement and tumor size/grade. If researching causes you to much anxiety, get someone to sift through the info for you.
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I declined both after reading the research for several months. This was years ago.
Keep in mind, the doctors don't always read the research. They rely on what the standard of care is --which is just "consensus." I didn't realize this when I started my research. I wrongly assumed they made recommendations based on actual studies which indicated greater survival.
There was no significant survival advantage for chemo and Tamoxifen.
If you remember only one thing, remember this: get the actual studies from your doctor and don't rely on "relative risk" statistics. Rely on "absolute risk."
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Well, there you have it. You asked for opinions and the first two are somewhat conflicting. That is how it is here. You need to get as much info, from reliable sources, as possible and determine what YOU need to do. I would just add that you should visit the stage IV forum and check out how many of these ladies were node - or had very few + nodes.
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Studies of long term (10 years) survival do seem to support the longer life span of those with positive nodes who DO take chemo and hormonal treatment such as tomoxofin. If there are studies that prove otherwise I would love to see them. I say this not to be argumentative but out of real curiosity. Treatments are always evolving so its hard to sort it all out...but tests denoting the aggressiveness (grade of tumor, K67) and oncotype can help. I wish you all the best!
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Please cite the studies.
Anom
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Hi Linda,
Exactly a year ago I was diagnosed with breast cancer similar to your stage. I decided on a bilateral mastectomy with reconstruction and lymph node dissection. The positive lymph node was a surprise discovered by the surgeon during surgery. It wasn't even one of the sentinel nodes. The surgeon visualized the node which was practically completely engulfed with cancer. This changed my treatment. My IDC was grade 1, Ki67 - 4%, oncotype 11. I decided on 4 rounds of chemo TC and I am on tamoxifen. I am postmenopausal. I will be on tamoxifen for 2 years then switch over to one of the aromatase inhibitors. You need to take into consideration your age, cancer grade, Ki-67, pathology report with size and position to chest wall of your tumors and oncotype. Funny I did not want radiation treatment. Radiation bothered me more than chemo or tamoxifen. In your case radiation is kind of automatic because you had a lumpectomy. I got conflicting opinions from several radiologists and decided to listen to the head of radiology at my hospital with 30 years of experience who said I did not need radiation after all the treatments I already went through. I am very satisfied with what I decided for my treatment. The year was difficult and I felt it would never end, but now that I am at the end of the tunnel it feels good. I had my last surgery 2 months ago and physically have healed well. I wish you the best and feel that getting opinions and researching the web and especially this site was extremely helpful for me in making my decisions. Good Luck.
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Here are just a few for anomdenet. I would appreciate the same from you.
Survival after adjuvent oophorectomy and tomoxifen in operable breast cancer in premenapausal women. J Clin Oncol 2009 Jan 10;26(2) 253-7
Effects of Chemotherapy and hormonal therapy for early breast cancer on recurrence and 15 year survival: and overview of randomized trials. LANCET 2005: May 14-20; 365 (9472): 1687-717
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Thank you so much to everyone for your input! I should have stated in my initial post that I'm 37 years old and have not had kids yet. Having kids is important to me, which is one of the main reasons I am inclined to decline chemo. I don't want to go into menopause.
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I can totally understand the fertility concerns. There is a youngsurvival.org which specifically addresses your concerns. I think there may be a section here too. I wish you all the best in your journey!
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Lookingfor,
You need to cite the authors so I can access the study and findings.
anom
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Lancet 2001 Jul 28;358(9278):277-286
Polychemotherapy for early breast cancer: an overview of the
randomised clinical trials with quality-adjusted survival analysis.
Cole BF, Gelber RD, Gelber S, Coates AS, Goldhirsch A.
Dartmouth College Medical School, Lebanon, NH, USA.
BACKGROUND: Overview analysis involving 18000 women with breast
cancer in 47 randomised trials showed that prolonged chemotherapy
significantly reduces the risk of relapse and death compared with no
chemotherapy. Here we express the size of the benefit in terms of
quality-adjusted survival time gained. METHODS: We used the Q-
TWiST method (Quality-adjusted Time Without Symptoms of disease
and Toxicity of treatment) to provide treatment comparisons within 10
years' follow-up, incorporating differences in quality of life associated
with times patients spend with chemotherapy toxic effects, after relapse,
and without symptoms of relapse or toxicity.
FINDINGS: Within 10
years' follow-up the benefit of increased relapse-free and overall
survival for younger women (<50 years old) who received
polychemotherapy balanced the burdens in terms of acute toxic side-
effects, especially among women enrolled in trials that did not include
tamoxifen. Overall, chemotherapy-treated younger women gained
an average of 10.3 months of relapse-free survival and ******** 5.4 months
of overall survival within 10 years (p<0.0001 for both) compared with
the no-chemotherapy group. -
Linda,
My diagnosis is similar to yours, only I was 10 years older and had already had my children. I do encourage you to check out the young survivor site for input on those issues. I researched like crazy, and finally realized that timing-wise I was on the cusp of the question about chemo for ER+ Her2-- cancers. The question of whether chemo offers real benefits is being asked and researched, but the answers aren't all in. For women who are node negative the Oncotype test offers some information and the TAILORX trial is in progress to answer some of the questions we have. Some women with positive nodes have gotten Oncotype tests, but the maker only suggests that for post-menopausal women. In Europe women with our diagnosis might get chemo but might just get hormonal treatments like tamoxifen or ovarian ablation. In the US it would be difficult to find an oncologist who would not recommend chemo for a pre-menopausal patient with a positive node. I did the chemo, and still am not confident that I got any benefit from it except for shutting down my ovaries and putting me into menopause. I was more convinced that tamoxifen was necessary and I have been on it for about 8 months without any significant side effects.
You will get a lot of opinions here, one thing to be aware of is that the right answer for someone with an different type or stage of cancer may not be the right one for you. If I hadn't had that damn positive node I would have resisted the chemo. But then I would have gotten the Oncotype and would have had some indication of how likely chemo was to be helpful.
Oh, I wanted to add, that I had TC x4 for chemo, which is fairly new for routine early stage use. So that adds to the difficulty of determing how studies (done with other chemo) would apply to you.
The one thing that help for me was finding an oncologist who would talk me through all the research and who respected my need to understand fully my diagnosis and why she was suggesting certain treatments for me. The first one I saw just blew into the room and said "you need chem, sign up for this trial". Not my style at all! Second opinions are normal and can be helpful in sorting through your treatment choices.
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Second opinions are so important! Many of the women in my support group also visit with a fetility specialist before embarking on any treatment and they work hand in hand with the oncologist in your treatment plans.
About the oncotype test...I was diagnosed 1.5 years ago so they were only testing node negative women. I was willing to pay for the test and was refused. Now they are doing it with women who have one or two positve nodes (that was me) and insurance is picking up the bill. I wanted to have my tissue samples tested now but was told it was not possible. I still don't believe that, but having been through treatment I am not sure it would be cost effective, except possibly to give me a little peace of mind.
To anomdenmet: you can copy the article title and paste into www.pubmed.com and the exact article will come up for your review.
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lookingforward,
IIf you had the abstract, is there some reason you didn't just paste the abstract here so we don't have to chase it down?
thanks!
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I am at work so will address the issue later. Here is just one of the many, many articles I read through. More later...
Effects of Chemotherapy and hormonal therapy for early breast cancer on recurrence and 15 year survival: and overview of randomized trials. LANCET 2005: May 14-20; 365 (9472): 1687-717
BACKGROUND: Quinquennial overviews (1985-2000) of the randomised trials in early breast cancer have assessed the 5 year and 10-year effects of various systemic adjuvant therapies on breast cancer recurrence and survival. Here, we report the 10-year and 15-year effects. METHODS: Collaborative meta-analyses were undertaken of 194 unconfounded randomised trials of adjuvant chemotherapy or hormonal therapy that began by 1995. Many trials involved CMF (cyclophosphamide, methotrexate, fluorouracil), anthracycline-based combinations such as FAC (fluorouracil, doxorubicin, cyclophosphamide) or FEC (fluorouracil, epirubicin, cyclophosphamide), tamoxifen, or ovarian suppression: none involved taxanes, trastuzumab, raloxifene, or modern aromatase inhibitors. FINDINGS: Allocation to about 6 months of anthracycline-based polychemotherapy (eg, with FAC or FEC) reduces the annual breast cancer death rate by about 38% (SE 5) for women younger than 50 years of age when diagnosed and by about 20% (SE 4) for those of age 50-69 years when diagnosed, largely irrespective of the use of tamoxifen and of oestrogen receptor (ER) status, nodal status, or other tumour characteristics. Such regimens are significantly (2p=0.0001 for recurrence, 2p<0.00001 for breast cancer mortality) more effective than CMF chemotherapy. Few women of age 70 years or older entered these chemotherapy trials. For ER-positive disease only, allocation to about 5 years of adjuvant tamoxifen reduces the annual breast cancer death rate by 31% (SE 3), largely irrespective of the use of chemotherapy and of age (<50, 50-69, > or =70 years), progesterone receptor status, or other tumour characteristics. 5 years is significantly (2p<0.00001 for recurrence, 2p=0.01 for breast cancer mortality) more effective than just 1-2 years of tamoxifen. For ER-positive tumours, the annual breast cancer mortality rates are similar during years 0-4 and 5-14, as are the proportional reductions in them by 5 years of tamoxifen, so the cumulative reduction in mortality is more than twice as big at 15 years as at 5 years after diagnosis. These results combine six meta-analyses: anthracycline-based versus no chemotherapy (8000 women); CMF-based versus no chemotherapy (14,000); anthracycline-based versus CMF-based chemotherapy (14,000); about 5 years of tamoxifen versus none (15,000); about 1-2 years of tamoxifen versus none (33,000); and about 5 years versus 1-2 years of tamoxifen (18,000). Finally, allocation to ovarian ablation or suppression (8000 women) also significantly reduces breast cancer mortality, but appears to do so only in the absence of other systemic treatments. For middle-aged women with ER-positive disease (the commonest type of breast cancer), the breast cancer mortality rate throughout the next 15 years would be approximately halved by 6 months of anthracycline-based chemotherapy (with a combination such as FAC or FEC) followed by 5 years of adjuvant tamoxifen. For, if mortality reductions of 38% (age <50 years) and 20% (age 50-69 years) from such chemotherapy were followed by a further reduction of 31% from tamoxifen in the risks that remain, the final mortality reductions would be 57% and 45%, respectively (and, the trial results could well have been somewhat stronger if there had been full compliance with the allocated treatments). Overall survival would be comparably improved, since these treatments have relatively small effects on mortality from the aggregate of all other causes. INTERPRETATION: Some of the widely practicable adjuvant drug treatments that were being tested in the 1980s, which substantially reduced 5-year recurrence rates (but had somewhat less effect on 5-year mortality rates), also substantially reduce 15-year mortality rates. Further improvements in long-term survival could well be available from newer drugs, or better use of older drugs.
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This is from 2005 anything more current floating around?
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Thank you, lookingfor.
These are relative risk statistics, not true absolute risk stats. They are implying hormone positive women get over 57% + 45% advantage from chemo plus Tamox. That's 102%.
That shows how wildly misleading relative risk stats can be.
You need to compare: how many ER+ women out of a hundred were alive in both the chemo group and non chemo after 15 years. Period.
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There are so many studies done that seem to document the benefit of chemo in certain situations and most definately tomoxofin or other similar meds for most ER/PR+ women with early stage or even advanced breast cancer. There are studies that document the triple negatives too. I would literally have to post hundreds. I am not in the mood to get into a debate about the mathmatical or statistical analysis of each as I could point out things in your post as well. Suffice it to say that there is a myriad of information available and a great deal of recent research that has yet to be applied to long term survival outcomes. It is such a personal decision for each women and her doctors to decide. For me, after I read for weeks, I opted for chemo. I had two positive nodes, mult-focal cancer in one breast and positive pathology. I can't even begin to tell someone that chemo will or won't work for them because even though we know it works for some we don't know who those "some" are. I think it is irresponsible to say that chemo and tomoxefin do not increase survival. That is a mighty big blanket statement to make. My chemo may might not have done the trick for me, only time will tell. But one year after it is done I am still glad I did it. But thats me.
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Relative stats are a valid statistical measure. Absolute risk stats vary from person to person depending on their individual initial risk. Relative stats apply to whole groups. They are only misleading if you dont undersand them.This sentence seems to be the one you are upset about, and it is perfectly clear from a statistical point of view.
if mortality reductions of 38% (age <50 years) and 20% (age 50-69 years) from such chemotherapy were followed by a further reduction of 31% from tamoxifen in the risks that remain, the final mortality reductions would be 57% and 45%, respectively.
The 57% and 45% refer to the relative risk reduction of chemo plus tamox for the two different age groups (less than 50 and 50-69) that the study separated subjects into.
In this example absolute reduction numbers would be meaningless because they would vary widely depending on the initial mortality risk. The relative risk allows the researcher to provide information no matter what the initial risk was.
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I have to say that I found it pretty amusing that anomodent cited a 2001 study and lookingforward4more a 2005 study that are both part of the "quinquennial overviews of the randomised trials in early breast cancer". They are both part of the Early Breast Cancer Trialists' Collaborative Group. It's the same large group of randomized trial studies that are being followed over the years! You can access the lastest reports from this group and learn more about the methods they are using at:
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Lookingfor,
I am not criticizing your personal decision. I am rooting for you. I hope your decision allows you to live for a very long time. I sincerely mean this.
My only concern is that people do not know what the studies really say and they are being mislead. Relative risk statistics are used to persuade people to act in a specific way. It takes months, not weeks, to read the studies so you understand them. And patients need guidance becaust most doctors don't know how to read the studies --tho a few do and are great. The National Breast Cancer Coalition gives courses on understanding studies. I've learned never to make a decision until I feel confident I understand the literature fully.
The best way is to get into a group of study readers and pitch questions about What is this study doing? What methods is it using? Are the conclusions contradicted by the findings?
Lookingfor, you may be past this now and not want to look back. You sound like a strong and kind person. Go for it!
Anom
Blessings
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Revcat,
I'm so glad you are amused and still believe relative risk stats are valid. Those two seem to go together.
Bon chance!
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How else would you describe the amount by which any remaining risk is reduced by a particular treatment for a group of people who all have different risks prior to the treatment under study?
You still don't get it do you?
Relative risk statistics are not designed to fool people into thinking that treatments work better than they do. If that happens it is because the general public simply is lacking in mathematical understanding. Relative risk statistics are used so that researchers can compare across samples.
How hard it is to multiply your individual risk by the relative risk reduction percentage to obtain your individual absolute risk reduction?
And yes, I think it is really funny that the study you cited is part of a larger on-going study that is continually updated that does demonstrate the efficacy of chemo and hormonal therapy in keeping women alive. Maybe not enough women for you. But a statistically significant number of women (Oh, and "statistically significant" is also a mathematical term. It means that an event is unlikely to have happened by chance. Researchers use a common threshold before they say something is statistically significant.) In the case of the study you cited, the chance that the extention of dfs and os was a random event and not due to the treatment was 1 in 10000. (That's what the p<0.0001 means). Treatment may not have been as effective as you like, but for a large sample of women at various stages of breast cancer this is a significant result.
Frankly, you are the one misleading people. It does not take months not weeks to understand studies. It does take a basic understanding of the scientific method and of statistics.
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Anom, I am confused. Are you saying that you don't think chemo should be advised because it does not help enough women? Or am I missing something?
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From the NCI: The EBCTCG performed a meta-analysis of systemic treatment of early breast cancer by hormone, cytotoxic, or biologic therapy methods in randomized trials involving 144,939 women with stage I or stage II breast cancer. The most recent analysis, which included information on 80,273 women in 71 trials of adjuvant tamoxifen, was published in 2005. In this analysis, the benefit of tamoxifen was found to be restricted to women with ER-positive or ER-unknown breast tumors. In these women, the 15-year absolute reductions in recurrence and mortality associated with 5 years of use were 12% and 9%, respectively. Allocation to approximately 5 years of adjuvant tamoxifen reduces the annual breast cancer death rate by 31%, largely irrespective of the use of chemotherapy and of age (<50 years, 50 to 69 years, ≥70 years), progesterone receptor status, or other tumor characteristics. This EBCTCG meta-analysis also confirmed the benefit of adjuvant tamoxifen in ER-positive premenopausal women. Women younger than 50 years obtained a degree of benefit from 5 years of tamoxifen similar to that obtained by older women.
Some of the most important data on the benefit of adjuvant chemotherapy came from the EBCTCG, which meets every 5 years to review data from global breast cancer trials. The year 2000 overview analysis (published in 2005) summarized the results of randomized adjuvant trials initiated by 1995. The analyses of adjuvant chemotherapy involved 28,764 women participating in 60 trials of combination chemotherapy (polychemotherapy) versus no chemotherapy, 14,470 women in 17 trials of anthracycline-containing versus CMF-type chemotherapy, and 6,125 women in 11 trials of longer versus shorter chemotherapy duration.
For women younger than 50 years, polychemotherapy reduced the annual risk of disease relapse and death from breast cancer by 37% and 30%, respectively. This translated into a 10% absolute improvement in 15-year survival (HR = 42% vs. 32%). For women aged 50 to 69 years, the annual risk of relapse or death from breast cancer was decreased by 19% and 12%, respectively. This translated into a 3% absolute gain in 15-year survival (HR = 50% vs. 47%). The absolute gain in survival for polychemotherapy versus no adjuvant therapy in women younger than 50 was twice as great at 15 years as it was at 5 years (10% vs. 4.7%), while the main effect on disease recurrence was seen in the first 5 years. The 15-year cumulative reduction in mortality from 6 months of an anthracycline-based regimen (e.g., fluorouracil, doxorubicin, cyclophosphamide [FAC] or fluorouracil, epirubicin, cyclophosphamide [FEC]) was 38% in women younger than 50 years, and 20% in those aged 50 to 60 years.
The role of adding taxanes to adjuvant therapy
A number of trials have addressed the benefit of adding a taxane (paclitaxel or docetaxel) to an anthracycline-based adjuvant chemotherapy regimen. A literature-based meta-analysis of 13 such studies demonstrated that the inclusion of a taxane improved both DFS and OS. Five-year absolute survival differences were 5% for DFS and 3% for OS in favor of taxane-containing regimens. There were no differences in benefit observed in patient subsets defined by nodal status, hormone receptor status, or age/menopausal status. There was also no apparent difference in efficacy between the two agents. However, none of the studies reviewed involved a direct comparison between paclitaxel and docetaxel.
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Bottom line from above article regarding chemos:
"This translated into a 3% absolute gain in 15-year survival (HR = 50% vs. 47%)."
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I am definately NOT a mathmatical whiz, I definately need to read things on an everyman level. That said, I copied my adjuvent online read out when I was diagnosed. It shows that with no treatment my chance of dying was over 30%. With chemo and tomoxefin that chance went down to roughly 13%. I don't have any problem looking back at all. I felt like I would take my best shot for the circumstances in my life which included three kids, one who was only 9 years old. I figured (and forgive me for sounding depressing) that if I ended up losing my battle against breast cancer I wanted to be able to say to them that I tried everything and it was God's will. It may sound simplistic but thats what I felt. I suffered through a tough treatment plan and still have some residual effects even today (although its getting better). But I was of the school of thought that even for a 2 or 3 % bump it was worth it for me. I appreciate everyone's passionate and detailed responses. God bless!
How to Use This Information
The estimates shown on these sheets may be a useful supplement to a discussion with your
doctor about some of the different adjuvant treatment options you may consider.
The decision of whether to get some type of adjuvant therapy involves taking into
consideration information about the amount of benefit and risk involved in getting such
therapy.
The estimates given here may be modified by additional information your doctor has about
your state of health and the characteristics of your cancer.
We live in a time of changes and improvements in the basic understanding of how breast
cancer grows and sometimes spreads. At this time the treatments for breast cancer are also
improving. Therefore in the future the estimates of the risk of relapse may become more
accurate and the effectiveness of therapy may improve.
Shared Decision Making
Name: _________________________________________ (Breast Cancer)
Age: 46 General Health: Fair
Estrogen Receptor Status: Positive Histologic Grade: 2
Tumor Size: 3.1 - 5.0 cm Nodes Involved: 1 - 3
Chemotherapy Regimen: Third Generation Regimen
Decision: No Additional Therapy
63 out of 100 women are alive in 10 years.
34 out of 100 women die because of cancer.
3 out of 100 women die of other causes.
Decision: Hormonal Therapy
10 out of 100 women are alive because of therapy.
Decision: Chemotherapy
17 out of 100 women are alive because of therapy.
Decision: Combined Therapy
22 out of 100 women are alive because of therapy.
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The 3% absolute gain in 15 year survival from chemotherapy is for women ages 50-69. The absolute gain in 15 year survival rate for women younger than 50 years old is 10%.
Although 3% absolute gain in 15 year survival may not seem significant, a women who is 55 years old may very well want to increase her chances of living to age 70 by 3%, the same for a woman who is 65-69 years old - a 3% greater chance of living to 80-84 may be very significant.
But in the end, it's each person's individual decision and they must be comfortable with it.
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Wendy, you hit it right on. Actually, I've always found that a fascinating question. Read a study once showing that a large number of American's would take chemo for an absolute survival benefit of 1%. (Whether they could find an Onc willing to give it for that is a different question.). I always thought you'd have to give me a very high number until I got BC myself. My perspective quickly changed. I'd do it again, even knowing now how very ill I got. Time will tell if I made the correct decision. After seeing what I went through my DH says you couldn't give him a number high enough to get him to do it. As a friend of mine said, that's why this is America we're all entitled to make our own decisions. (Actually she said, this is America, everyone is entitled to make a stupid decision.)
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I was against chemo, even given my specifics: aggressive Her2+, etc.
I didn't want to diminish my quality of life; however, I also have to pull out all the stops for the people I love the most (personal decision).
I don't like the way that the technicians attempt to scare the crap out of you with seeping, open wound stories. I don't like that big biopsy needle. I don't like female oncos who say, "I think I can cure you," looking at my numbers instead of my person. I don't like the numbers when every body is different and you have to look at YOUR numbers and make informed decisions at a scary time. I don't think anyone likes feeling like crap most of the time.
I don't like "support group" people that aren't supportive and who tell others without asking you when you asked them not to.
It's odd how you can make one decision when you're on the other side of the bars of the lion's cage, and a totally different one when you're standing next to the lion.
Thanks for the good dialog on this post, ladies.
Sessna1
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