Why Im Not Doing Chemo
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Not to be rude but do you ever notice people walking away when you talk AA? Or running the other way? I will probably be in trouble, but man are you being purposely obtuse. I feel like this is a game for you - somehow instead of a serious subject - sorry - just MHO!!!
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I pretty much agree with Nancy. While I think AA's insistence on ovarian oblation for Eve is a little odd, the title of this thread is "Why I'm Not Doing Chemo," not "Do You Think I Should Do Chemo?" She has clearly made up her mind. So going back and forth about the benefits of chemo is a little bit useless on this particular thread. I researched alt treatment thorougly when I was diagnosed and was completely underwhelmed at the success rate for curing cancer, but impressed with the success rate for enhancing treatment and improving QOL. Thus my choices.
I also believe that everyone here is genuinely concerned for Eve's welfare - I know I am sure am. I I decided, on the advice of two oncologists, to leave my functioning, pre-menopausal ovaries alone. For some, that might seem a risky decision, but I'm happy and comfortable with it. We're all just doing the best we can.
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Eve - you have never said how your husband feels about all of this. Have you been telling him everything? Does he know how serious HER2+ve bc is?
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Again, I had another crazy long day at school. It feels good to be back out there in the world. I came home, and again slept for 4 hrs. It's almost midnight, so I'm posting late again...my sleep hrs are confused
But, I don't have to get up early tomorrow morning.Alaska Angel is my friend. She has been a great source of encouragement to me. I don't think she has hyjacked my thread. Her motivation is to give me an alternative option to anti-estrogen drugs. Although, I'm not about to remove my ovaries. I'm the only one of my sisters, who has their original plumming
They have aged much more than I and one is one yr older and the other a few years younger. I don't want any more surgeries than I have to...Plus...I'm not wanting to rid my body of the little estrogen it needs as preventive cancer treatment. Apple, reconstruction, I'm half way there, and I'm not going back. Appreciate your thoughts, but the idea of losing my breast was hard enough and I did it with the thought of it being agressive cancer treatment. I don't think I would had considered a mx without breast reconstruction. Emotionally, at least for me losing my breast was difficult. For this reason, I chose to keep my left breast. My left breast gives me a feeling of some sense of normacy and feminity. Once my right breast gets the TE's out and the implant in I'm sure I'll feel a little better. One person who understands this struggle is Deirde. She was a real help and friend in working with me through the struggle of losing a breast. You may not appreciate it, but I felt a real loss and grieved about losing my natural right breast.
Like Nancy, we're all sharing our opinions based on studies or knowledge that has persuaded us. We aren't each others doctors. I appreciate the vast information here, although much of it way beyond me. I do hopefully will take time over the weekend to read through the last 4 or 5 pages.
I am deeply touched that so many of you care about my welfare. Not to frustrate you, but I'm firm about not doing chemo. I am open to alternative options. I had hoped that my explanation of why I'm not doing chemo, would had settled the question of my choice... so not to have to continually explain why I don't want to do it.
Again, I am under the care of an oncologist and doctors who also care. They I'm sure are finding me also challenging in that I'm not following what they would consider "standard" care.
I am going to check out an oncologist who is more acquainted with alternative medicine. Right now, I'm feeling a little pushed. I want to step back and make sure I'm not rushing into treatment that I will regret. My choice whatever it is again has to do with an individual plan that works for me in light of my overall health issues and quality of life. The fact that I work so feeling good over all is very, very important to me.
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Susie, my husband supports me in whatever I want to do. He is a researcher as well. He's very left brain so he thinks very different than I. It is amazing although we are so different that we have come to similiar opinions. He has a very good friend who has cancer, who has done well on alternative, and his friend sends him a lot of alternative treatment threads has persuaded him never to do chemo. My daughter also says no chemo. I would say 99% of my friends also say no chemo...and I have a lot of friends. Just about everyone knows that I have gone through cancer surgery and I'm constantly being told horror stories of chemo.
A huge influence also has been the many stoires from bco who have had chemo. Although they seemingly are happy to have had it...yet I read the pain and side effects which also shys me from considering such treatment.
I hope someday there is targeted cancer therapy where perhaps chemo can be used without killing healthy cells, and organs. For me chemo is a greater risk factor than not doing it. There are risk factors no matter what we choose...whatever it is we need to feel completely confident it is the right choice for us.
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Eve,
What strategies did your husband's friend use and what kind of cancer did that person have? I'm super curious.
I found some interesting alt sites - chrisbeatcancer, greendrinkdiaries, existingstricky. I read the Jane Plant book.
I think part of the reason that most women are satisfied that they did chemo is that conv treatment got them to NED in 9 months or less. The alt treatments seem to take a lot longer. I know a woman with lymphoma who is pursuing alt treatments and her tumors are still growing at this point. She is committed, though.
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Eve, decisions are made for good reasons. At the start of this thread, you presented the reasons why you will not have chemo. As I've mentioned many times in posts to you and PMs to you, I really do appreciate your concerns about chemo. I appreciate that you have other health issues that make chemo more of a risk for you than it is for most other people.
Sometimes decisions change when new information becomes available. The intent of my posts over the past few days was not to push you towards chemo but to present new/different information to add into the pile of considerations. I presented information that I thought to be very relevant to your situation; whether or not that information is meaningful to you or impacts your decision is entirely up to you.
I believe that for everyone, the decision on any treatment should be based on a benefit vs. risk assessment. What each of us put into the benefit column and what each of us put into the risk column is different, based on our BC pathology, our health history and family history, our emotions, feelings and fears about the effects of BC and the effects of each treatment, etc.. I have never been one who agrees with the idea that it's best to "throw everything at it" - because I understand that in some cases the impact and risk from the treatment will be more severe than the risks from the disease itself. And while I think there is value to listening to our instincts, I worry when I see women here who react solely based on their instincts without considering the benefits and risks, because the decisions they make (whether to have a treatment or not have a treatment) might turn out to be more harmful to them than helpful.
In your case, I know that your benefit vs. risk assessment for chemo is stacked very much towards the risk side because of your other health issues and your concerns about the side effects of chemo. I completely understand and agree with that (not that my agreement matters one little bit!). I presented the information about the significantly higher mortality rate associated with having a 3.8cm HER2+ tumor, and the resultant reduction in mortality from chemo, as something that could be added to the benefit side of the list. As I mentioned in one of my other posts, I was shocked when I saw those numbers in the Lifemath graph. For me, this information is a game changer; it would shift the scales and tip them the other way. But that doesn't mean that this information has the same weight for you or that it tips the scales for you. You get to decide how much weight you put on every piece of information related to your treatment decisions. You get to decide what you put on your benefit vs. risk list. You get to decide if you even want to have a benefit vs. risk list, or make your decisions based on other criteria.
It is your decision. And I wish you only the best.
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Beesie, I have never felt pushed by you. You are one person here who puts out information without making people felt guilty either way. You want bc women to know the general guidelines. I understand what you are saying. I haven't gone back yet to read carefully what's been written the last few days. I've scanned a little of it but have not really read it.
However, I do feel a little pressure from those who feel as if I have no other choice but "standard" care for cancer prevention. I would like to rest my case with them in that I have very much considered everything. Besides, people I know personally who've unsuccessfully gone through chemo treatments, research for months, I've read the chemo, hormone, reconstruction, and now surgeries threads...past ones as well. I've also read some of the more advance stage threads just to know what those ladies are going through to understand what it would be like to have advance cancer. I have no right to say I understand what they are going through because I haven't been there. I just know with what I've read, I don't want to go there. And yes, some are on the otherside of it with years to live and they want others to know that it worked for them. I also am smart enough to know what worked for one person doesn't always work for another. I also know that chemo doesn't always work. Believe me ladies, I'm looking at all with eyes wide open.
And, I know that for some cancers chemo does work. I also know that most stage 1a women cancers that 75% with surgery alone will never have cancer again. I know that there are those who go through treatment will have recurrences.
Life is a gamble isn't it. Perhaps, I'm gambling more than some of you, but like Beesie said, I have other risk factors that make what I put on the table a little more risky.
Mostly this thread has been a great discussion on chemo. For a long time I feared bringing up the chemo discussion not wanting a war between alternative vs conventional. I would not posted this anywhere else. I want nothing more than peace and goodwill for all those who come here...hopefully, we all do.
Those who are doing alternative to chemo, I' would love to hear whats worked for you. I know there are some good threads addressing alternative to tamoxifen and etc....just don't have as much time lately to weave through all the information. I've a lot to learn in regard to the whole estrogen topic. I'm looking at DIM...not sure what I think as yet...just reading, and asking questions.
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Eve I hope you are recovering well. Hugs to you.
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Eve, just to clarify the data that's been discussed, if you had two separate tumors, with one removed during your biopsy and another removed during your mastectomy, and if the largest really was under 2cm in size, then it is about right that 75% don't recur after surgery alone (Lifemath says 72%). If however you had a single tumor that was removed over two procedures and that tumor was actually 3.8cm in size, then it's only 51% who don't recur with surgery alone. That's what the Lifemath data shows.
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This thread has a lot of interesting posts I've been reading through. It's nice to see both sides discussing.
Eve, good luck with whatever treatment you choose. I had a question about what you said about estrogen in the post above, about "not wanting to rid my body of what little estrogen it needs as preventative cancer treatment". Does estrogen prevent some cancers? I have never heard this before.
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Beesie, I would find it interesting to how many oncologist and or bc surgeons consider the biopsy as part of the final dx. My oncologist said the final pathology report trumps whatever the biopsy is found in the final surgical report. As far as the recent bc surgeon or oncologist I am stage 1a ...doesn't matter if it is the same tumor. She also seems to think grades can change.
One bc surgeon I consulted with earlier, but didn't use recommended a younger oncologist in that they are more likely be familiar with newer studies. You are probably right, but it doesn't matter in the long run because the treatment doesn't change from stage 1a to 2a.
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I am a newbie here....but Eve, I give you support at whatever treatment you decide. You know your body and YOU know whats best. My mom has had ovarian cancer now for 4 years, in remission for less than 6 months and bang it came right back. She has gone through chemo as well an an initial surgery. The docs said to her recently, "Nothing is working." Now, she said she just wished she would of known about alternative medicine before starting the chemo. The chemo has killed her good cells and her immune system is down. She is very weak right now. Has lost about 25 pounds. We are praying that this new "alternative" medicine revives her good cells again giving her some good quality fo life. Both my mom and I carry the BRCA 2 gene. Both my gmas have passed away from BC at a young age. My mom was 51 when diagnosed w ovarian cancer, stage 3C. Cancer just plain stinks no matter which one it is. You have a choice and that choice is yours. So I give you my support and I pray that God will continue to direct you.
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I don't think it's only younger oncologists who are up to date with the latest research and treatment methods. My onc is in his 60s and is involved in a lot of studies and BC organisations. A lot of the oncs in his practice go to San Antonio each year and to other conferences around the world (from Australia). I think provided the onc is in a leading practice in a first world country and particulary if s/he participates in research, academia and conferencing, s/he will be up with the leaders in making treatment recommendations. There is a case that experience can indeed be better than youth since a very experienced onc will have seen more cancers and the effectiveness of treatments first hand and can draw on all his/her experience when making treatment recommendations.
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Eve - the difference in stage does matter as the risk of recurrence is much higher if the tumour was larger. I think you really need to get this pathology issue sorted. It may be they have combined the 2 samples and came up with the size, but it is important to know what the size really was because it may put you at a much greater risk than you think.
Sue
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Sue...not so. I asked my oncologist if they put the two sizes together and the oncologist said no. They only consider the final path report. The biopsy was sent to a whole different lab than the final surgical biopsy went to because at that time I was considering a different hospital and surgical team. So the last lab has no idea of what is on my biopsy report. I am going to ask my bc surgeon tomorrow to send the mx tissue to the first lab. The first lab did my other biopsies and seem to be more complete as they are a larger insitution.
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Eve - drat - I was hoping they had combined them. I don't want it to be a higher stage for your sake. You are different in that such a large biopsy was taken. A core needle one doesn't get all that much tissue, so the final path based on the surgery is pretty accurate.0
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Sue, I saw the original biopsy. It was done by the vacuum. I saw the mammo picture of the circuliar tumor incased by microcalifications with a few stray calification in a linear position. The biopsy rad dr. smiled and said she thought she got about all of it after taking pics of it by mammo. She came back, I saw with my own eyes the tissue taken. I said it looked at least like 2 C. The rad dr smiled and said, yes, I left a little of the tumor for the surgeon to make sure she gets wide margins. They then took another mammogram of the breast to make sure the clip was position in the right place. Right where the clip was I saw just a few stray califications. I said to the dr. wow...you took out most of the califciations.
Later I am told that the mri only showed .5mm left so I thought...good they got most of it out so waiting on the surgery isn't so bad because just a tiny is left and who knows maybe what is left is only dcis. But...what was left either grew or they didn't see if all because was in the same place under the 1st scar tissue.
However, it doesn't matter what size it is because stage 1a that I am dx with has the same treatment as stage 2a. I just brought this all up because I think the whole staging for early cancer and how its all done is very confusing and needs to be changed. So far, every dr. dismissed the original biopsy.
But...my third biopsy was different (the one done in Jan 2011 for mucinious cancer)...they used a needle biopsy under a ultrasound. I watch them pinch out a tiny bit of the tumor...very tiny. So in that case yes, I can see how the final report was more accurate.
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Eve - if they say they only left a little, then they may have taken the original biopsy in to account. I'm sure a different lab should have access to the other one's test results.
Yes, the treatment might be the same but the risk of mets is much much greater, the larger the tumour is. That's why Beesie and I ask these questions of you. I know you don't want chemo, but if it was larger, then your 75% won't recur figure is quite incorrect. I really really care and worry about you, and don't want to find out later, your situation has become much worse.
(((((HUGS))))
Sue
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Hi eve. Sorry to be thick but i dont lnow what you mean about the treatment for stage 1 and stage ii is the same. I thought chemo was usually recommended for stage ii but not necessarily for stage i?/
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Cynister - Eve is HER2+ve - the treatment is the same for Stage 1 as Stage 2 as it is such an agressive cancer. Usually only 5mm and over are offered chemo/herceptin but that is changing as smaller tumours can end up metastasising too.
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I see thanks. It doesnt take much to confuse me!
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Susie, sorry, but the oncologist made it absolutely clear to me that the first biopsy was not considered. She said, usually biopsy are too tiny to consider and for that reason they only consider the final biopsy. What is strange is when we talked first about the original biopsy she saw the size. My opinions, oncologist have so many patients that they don't have time to keep looking back at your scans or forget. If I hadn't talked with the first bc surgeon about the size of the tumor in regard to the original biopsy, I might have not ask this question. What I would like to do is send my last path report and send it to the labs that did my first biopsy and ask them.
I've been told so many different things from bc surgeons and etc that I am not sure. Maybe they are right? Maybe not? I should have it recheck to make sure. Mostly for curiousity.
Does it matter in the long run because again the treatment is the same?
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why question then, if the answer is the same?
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Eve - yes, the treatment is the same, but if you in fact did have a much larger tumour, then the prognosis is worse - see Beesie LifeMath results on a previous page.
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Actually her results were repeated on this page above:
Eve, just to clarify the data that's been discussed, if you had two separate tumors, with one removed during your biopsy and another removed during your mastectomy, and if the largest really was under 2cm in size, then it is about right that 75% don't recur after surgery alone (Lifemath says 72%). If however you had a single tumor that was removed over two procedures and that tumor was actually 3.8cm in size, then it's only 51% who don't recur with surgery alone. That's what the Lifemath data shows.
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I guess this is why I'm getting a second opinion by sending the tissue to the original labs. Why do I care...curious. Nothing more. I was told it was one tumor never two tumors. I just want to know the facts...wouldn't you want to know?
I don't think it's changing anything except in the future if there is a recurrence I have a better idea what I was actually dx with. Again, I merely brought all this up to say that a lot of early staging cancer is messed up in regard to treatment plans using my situation as an example. In the long run for me it doesn't matter. But for others who are confused, I think it does matter and needs better explanation.
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evebarry, I would also want to know. good for you for sending the tissue in to the original.
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Cindy, interesting question. Looking at Eve's diagnosis line (Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+, HER2+), I'd guess that her biopsy was early October. Eve's mastectomy was in late December; can a tumor grow from 5mm to 1.8cm over a less than 3 month period? That's pretty unusual - most tumors wouldn't grow that anything like that amount but I don't know if a particularly aggressive tumor might. The other possibility is that the tumor was larger right from the start but it simply wasn't visible on the films. It's not that unusual to find that the final tumor size, once surgery is done, is larger than what was expected based on what was seen on the pre-surgery films.
In either case, as I said in one of my earlier posts, this unfortunately seems to be one tricky, stealth, aggressive cancer.
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PCR is good stuff, hillck! It does sound like your tumor was growing fast, which is probably why the chemo was so effective. What are you doing, post-treatment, to prevent recurrence? Any diet/lifestyle changes to make your body inhospitable to cancer?
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