Why Im Not Doing Chemo
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Eve - Why have you had to wait so long for surgery? If you do end up having positive nodes (which should have shown on your MRI I believe), then you really need to consider going the chemo route. If women with HER2+ve bc who are node negative can end up with mets, then positive nodes would be much more dangerous. I wish you were a well person and could do chemo with some confidence. If your onc is willing to give you herceptin without chemo, at least try to do that. The SE's are absolutely nothing in the scheme of things - I never felt bad on it, except for peeing a lot on the night of treatment from the saline solution they give you. You could be her experiment of herceptin by itself. I do believe it's a true wonder drug!!
Sue
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Morning ladies! I am a very young 71 and definitely post menopausal, because I had a complete hysterectomy..ovaries and all....over 20 years ago. I'm not as worried about looking old as feeling old, and since I've been taken off my bioidentical hormones two weeks ago, I am starting to have the same symptoms I did before I went on them...lack of energy...insomnia...mild hot flashes....anxiety, etc. Just praying it will pass.
My recent tests showed that my E & P levels were still well below normal, and I was doing fine, so my bc was not caused by the bioidenticals, (started only a year ago) but probably by years of taking birth control pills and then synthetic HRT, Premarin only, that most likely created an imbalance of estrogen in my body because it was not being balanced with progestrone, which was zero upon initial testing. Who said it was perfectly safe for me to do these birth control pills and synthetic HRT? My doctors at the time! I was actually told it would prevent bc, as well as protect my heart and bones, so naturally I went full speed ahead, completely trusting what I was told.
Now, add to the mix, a doctor who tried to give me anti anxiety and sleeping medication several years ago, to alleviate symptoms of heart palpatations and insomnia, which I flatly refused to take. Had I followed his advice, I would now have an additional problem...addiction to meds! My own research determined that I could be suffering from a hormone imbalance, which led me to my bioidentical doctor and greatly improved symptoms and QOL.
Sorry, long story, but it explains why I don't just blindly trust what any doctor tells me, and why I rely on my own research and common sense to help me make my decisions about my medical care. As everyone on this site is aware, I've dramatically changed my diet to one of anti cancer, maintained my high level of Vitamin D-3, exercise, and do whatever else I can to keep my body in optimal condition. I think this is a necessary component to keep from having a recurrance, and I am prepared to eat and live this way for the rest of my life.
Someone once said that the definition of insanity is "doing the same thing time and again and expecting different results". I have read and researched enough to know without a doubt that if I don't follow my diet and lifestyle changes, with or without medication, I am asking for trouble.
Have a wonderful day everyone!
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Eve...are you still considering Tamoxifen? I have also done a lot of research on Tamoxifen, and I am so bummed that I can't take it any longer....I felt that by taking that drug, would "assure" me that I would not get cancer again..at least for 5 years.
The other "possible"side effect is, deafness. I read one of the gals say "It destroys hair cells everywhere"... and yes, even in the ears...which are the "nerves"... So after 14 months of relatively few side effects, I just lost my hearing.... 100% word recognition in my left ear, but only 50% in my right. And it is permanent.
I wear good hearing aids now, but it isn't the same.... If I had read where "deafness" was one of the possible side effects from Tamoxifen, I probably would have thought, "yeah, it's just like all the rest of the side-effects, couldn't happen to me." And who knows? No-one does. Yes, Tamoxifen is a chemo-like drug... but even enough aspirin could cause temporary deafness.
Maybe because I am older this happened...Or maybe I was just one of the few cases for whatever reason, went deaf. But there are several on this board that also lost their hearing.
As far as chemo, I don't know if I would even be offered this drug...(because of my age) But I would like to think that I would fight any other cancer with anything that was advised for me. I would "never say never" to any treatment... Just my opinion...
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Evebarry-
I think the question we always have to ask is "How common are these side effects?"
Out of curiosity I looked up the possible side effects listed for vitamin C, something we generally think of as healthy for us. I found they include...
NauseaVomitingIrritation of the esophagusHeartburn or indigestionIntestinal crampsFatigueFlushing (redness of the skin)HeadachesInsomniaDrowsinessDiarrhea.A blood clot in the legs (deep vein thrombosis, or DVT)Kidney stonesErosion of the teeth (seen with long-term use of chewable vitamin C tablets)Worsening of sickle cell diseaseHemolysis (destruction of red blood cells) in people with glucose 6-phosphate dehydrogenase deficiencyIncreased aluminum absorption into the body (which can be especially dangerous for people with kidney disease)Allergic reaction, such as: An unexplained rashItchingHivesSwelling of the mouth or throatWheezingDifficulty breathing.If I didn't know better I'd think we were talking about chemo!
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Hi Eve...Just popped in to say......
I saw your photo that you posted. You are one cool-looking chick. All that hair! And those long legs! You must be tall. I can see why you look so much younger than your actual age!!!!
Good look with all your decisions.
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Susie, to answer your question why I've had to wait so long for surgery. The first surgeon I saw, whom I loved, worked with a plastic surgeon that I didn't love...mostly due to the go to person..his associate whom is impersonal. It took 3 weeks to have a consultation with that plastic surgeon because his office person wouldn't make me a priority due to my biopsy dx.
A friend of a friend called me and strongly recommended me to see her surgical team. Her plastic surgeon uses botox. Having RSD (pain symdrome in right wrist), I know that I'm at high risk for it spreading or other nerve type disorders. The idea that botox controlling the spasms of the pec muscles (TE implants), and quicker recovery time motivated me to check out her surgical team. It had been about 5 weeks by this time since biopsy dx. The new bc surgeon wanted to get me within 2 weeks for surgery after seeing me. But, the plastic surgeon couldn't fit me in until early Dec. The only time the two surgeons could get together for the surgery is December 27th. I was willing to do it earlier...just didn't work out. This concerns my bc surgeon and oncologist.
Yes...at this time, I'm planning on doing hercepin without chemo.
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Painterly, Thanks... I'm 5'8"... yesterday 133...but I usually weigh around 137. Right now, I'm a little too thin. I love it when my doctors have to look back at my b-date thinking it's a typo.
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To the "old" folks like me (over 60):
These are the 2 trials for use of trastuzumab alone for the "elderly". Until they are proven one way or the other, we don't know the answer.and0 -
evebarry- have you been on this particular thread - it appears this site does have particular type of bc your dealing with.
Forum Index → Forum: Just Diagnosed → Topic: Mucinous Carcinoma of the breast
Interesting info from various women who suffer this.
LuLu I would imagine almost anyone can have allergic reactions to anything. I didn't read the side effects under Vit C that said it causes heart defects or deafness? evebarry is right in regards to her concerns with the options she has. We all need to question what's best for us.
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I started taking Femara last week. My onc did not test my estrogen levels. I am 56 and the women in my family go through menopause rather late in life. I had a hysterectomy in 1997 but my ovaries were left. When I had a vaginal ultrasound a few months ago the ovaries were so small as to not even been seen. So I suppose this is why they gave me Femara without checking my estrogen levels.
I have turned down chemo and am not even sure I want to continue taking the Femara. I'm sick of this already. I thought having a DMX would "cure" me but because there was 1 stinking positive lymph node the onc wanted me to do chemo. I truly felt that it was not the right course for me. Maybe I will regret it down the road but the way I look at chemo, it's a crapshoot one way or another. There's no guarantee it would prolong my life and putting those toxins into my body was not something I wanted to do.
When I talked to the oncologist the end of November, I was told I couldn't even have chemo if I wanted it because I was 16 weeks out from surgery. Apparently it has to be started within 12 weeks of surgery so that just reinforced that I made the right decision for me.
There are so many factors that go into the choice of whether to have chemo or not and what might feel right to me may not feel right to someone else.
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chiluver1228,
I know that oncs have favored treatment with chemo far enough out for healing from surgery but not long after that, but I don't know how firmly based their timeline actually is in terms of proof, or variation. Given that HR negatives and HER2 positives tend to recur earlier, and HR positives who are HER2 negative tend to recur later, what scientific basis do they have for lumping everyone together with a 12-week deadline? (Question everything; if they don't explain it, I don't buy it anymore.)
Nowadays, "everyone" does chemo in a shorter timeframe, using blood boosters. I refused them, which meant my treatments were 4 weeks apart instead of 3, for the counts to improve enough to handle the chemo. I didn't like being in chemo longer, but it let me know I also wouldn't be dealing with any effects from blood boosters.
My "treatment team" required the information that I was HER2+++ for their decision recommending chemo for me, but never informed me that I was HER2+++ until after I had done treatment. (But who in the end had to be the one to decide?)
"There are so many factors that go into the choice of whether to have chemo or not and what might feel right to me may not feel right to someone else."
Same here.
AlaskaAngel
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Eve~
Can you explain more about the botox?
I thought that botox was toxic?
Thanks.
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Its called botulinum toxin!
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http://annonc.oxfordjournals.org/content/19/2/400.full I thought this was some interesting reading surrounding those time lines we receive for chemo. I have been given until the 14th to determine the use of chemo and after that apparently it's a mute point. This page is about the colon not the bc but does share how the and why the times are chosen for bc patients as well.0
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Nice find! In the 2006 article referenced I can't tell what the patient characteristics' distribution was (whether there were 2 HR positives or 20 or 50), only that there were some included. For a retrospective study that lumps everybody together with one conclusion fits all is a little difficult to know what the reality is. For the same kinds of reasons I think sometimes we end up with one or two variations for a chemo that fits everyone in the same way.... It would be difficult for administration of treatments to provide a variety that fit individuals better, wouldn't it. Well, we are hopefully trying to move toward more sensible practices by using individualized treatments, so maybe eventually there will be better information about when the most effective application might be for each person.
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AlaskaAngel... Google search Marc Citron and dose-dense chemotherapy to understand the concept. I never had chemo, but he is my medical oncologist.
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Jazz... Eve is a good friend of ours on the mucinous bc thread....
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Yes, Jazz, last January I was dx with pure mucinious in the left breast. I had a lumpectomy to remove the mucinious cancer last March 4, 2011. VR was a big help to me in understanding the mucinsious cancer. It's a rare cancer and not a lot of information on it. The cancer I have now is in the right breast, a recurrence of the high grade dcis I had in 2007, found next to the 1st lumpectomy scar area. But, this time it is idc with the her2+++. It's confusing because I have now been dx 4 times...lst time, about a 2 C high grade como-n dcis. Second time, high grade multifocal through out quantrant of breast removed. Third time, pure mucinious, and fourth time, now, idc. It is alarming to the surgeons in that 4 yrs to have 4 dx's.. I make my doctors nervous
Great research girls. I just got home, brain dead from teaching all day. I have to go back and focus on what is written a little later
Tomorrow morning at 8:30 I have a pre-op surgery appt with my plastic surgeon...then another day of teaching. I haven't put the Christmas tree up yet...it lays in the middle of my livingroom floor. Christmas is a lot of work, but do it for family and friends.0 -
I'm pulling this conversation over from BlairK's thread in the HER2+ forum since the discussion there had started to focus on Eve's treatment and recurrence risk numbers. Eve, I hope you don't mind that I'm moving that discussion over here.....
AlaskaAngel, you asked me this question: "Can you point me to some understanding of the number that doesn't seem to be specifically pointed out in all the discussion? Could you mention the percentage of those who do the recommended treatment and recur anyway, in those situations you discuss?"
The number you ask for has been presented very openly in the discussions. In my earlier post in the other thread, I quoted these numbers from Eve's oncologist (you can find the specific details of that discussion in one of Eve's posts in this thread):
- 24% risk of distant recurrence based on current diagnosis (clear nodes, no evidence of spread) with no treatment other than surgery (reduced to 15% with chemo and Herceptin and Tamox)
So the answer to your question is 15%.... 9% more women survive because of the treatment but 15% of women develop mets despite having had the treatment.
I recall looking at LifeMath in the past and I know that they show all these numbers very clearly so I decided to take a look at LifeMath again, through the link that Omaz provided in the other thread. The numbers there are similar but provided a bit more detail - very interesting detail. Inputting a diagnosis similar to what's being discussed here, the LifeMath program showed a 30% risk of mets with no treatment other than surgery (within a 15 year period after diagnosis). Put another way, 70% survive with surgery alone. Adding Tamoxifen, the risk of mets goes down to 20%, however 2% of the patients succumb to other conditions so the net benefit from Tamoxifen is an 8% increase in the survival rate, up to 78%. Adding chemo to the Tamox, the risk of mets declines to 15% but 1% succumb to other conditions, so the net benefit of Tamox and chemo combined is 12%, increasing the survival rate to 82%.
Unfortunately LifeMath does not include Herceptin so I can't take the analysis that one extra step.
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Hi Beesie,
Thanks for the steady focus on making sure people understand the numbers. The descriptive language is subtle sometimes, and the kindly and well-intentioned focus on the positive or wished-for aspects does flavor the way the numbers are interpreted. It is most meaningful of all to those who are among the 15%, as a matter of respect. They are people who made the choice that made the most sense to them at the time and still didn't come out ahead. That 15% is what becomes invisible, by emphasizing primarily those who benefit.
That doesn't mean that choosing chemotherapy is not a good idea, since there are those who do benefit from it, even though there usually is no way to know for sure on an individual basis who did or who didn't.
Unfortunately, because the aids like LifeMath and Adjuvant Online have a built-in bias against providing the information to patients about the odds in comparing non-chemo ovarian ablation plus other treatments such as radiation, tamoxifen, and AI's, the comparisons are not adequate. And of course the use of trastuzumab alone rather than with chemo is also not presented because it has not been fully investigated as yet.
This deliberate failure to fully investigate, or lack of information in making choices, is most relevant for older/HR+'s (primarily stage 1's), who, with or without chemo, tend not to recur until 10 years out or more; and because the numeric effects of chemo indicate that it is only useful over the first 5 or 6 years and then drops off, it is most likely that the missing information about alternative methods of ovarian ablation and about trastuzumab might be available by the time it makes a difference for them.
It isn't usually understood by those who are genuinely passionately caring and frightened that my questions will scare newbies away from doing treatment, but what I am most interested in is finding ways for more of us to use critical thinking as a way of understanding what our choices actually are, not what we would like them to be, and as a way of eventually coming up with the most rational basis for dealing with each of our individual situations.
"Inputting a diagnosis similar to what's being discussed here, the LifeMath program showed a 30% risk of mets with no treatment other than surgery (within a 15 year period after diagnosis). Put another way, 70% survive with surgery alone. Adding Tamoxifen, the risk of mets goes down to 20%, however 2% of the patients succumb to other conditions so the net benefit from Tamoxifen is an 8% increase in the survival rate, up to 78%. Adding chemo to the Tamox, the risk of mets declines to 15% but 1% succumb to other conditions, so the net benefit of Tamox and chemo combined is 12%, increasing the survival rate to 82%.
Unfortunately LifeMath does not include Herceptin so I can't take the analysis that one extra step."
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Adjuvant et al assume radiation as part of the equation, and give options for selecting hormonals as part of the equation. What it is really way off base with is Oncotype. I imagine in the next five years these calculators will expand to include Herceptin, and Oncotype, as these have been two of the most amazing breakthroughs in cancer care. Oncotype will, in particular, show the subcategories of risk in the grade and histologies.
Hopefully, Oncotype will be offered to node-positive patients in the future. I know there has been some discussion on offering Oncotype to women with one node-positive.
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Beesie is good with numbers. Yet...numbers doesn't always tell you where you will fit in in regard to recurrences. I'm still scratching my head in the 75% of early cancer women are being over treated with harsh chemicals that could either cause another cancer or is harsh on your organs. I like the idea to future targeted therapies. No matter what we choose there are risks...risks if you do and risks if you don't. Each person dx must choose the risk that they can live with.
Thanks Beesie, I love your imput
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I've moved this answer to Blue- to this thread from the early stage alternative bc women to here as not to hyjack that thread from it's intent to discuss alternative medicine or alternative cancer prevention.
Blue, eveyone who visits here pretty much knows I'm the one who's been recently dx for the 4th time...and I do not believe I have been irresponsible about my choices. If you live in Canada you have medical healthcare, but if you are in the USA and middle class without insurance you are up the creek. As I said before, if I had the means probably the second time around I would have had a mastectomy on the right breast. Now that I'm old enough for Medicare, I have medical coverage...and even that is limited in regard to co-pays. Plus, the cancers I've had in the past weren't life threatening. The doctors I had said the odds were on my side...just to be careful to do the six month screening. So yes, to assume I am irresponsible is insensitive.
Second...I do understand that HER 2+ is aggressive. I am working with an oncologist. I am open to herceptin...NOT CHEMO for a couple of reasons. Answer this question for me...I even presented this question to the oncologist and this question is still not answered for me??? All I get is this is "standard treatment".
Herceptin locks onto the fast growing cancer so it's not fast growing. Chemo kills all fast growing cells. Then the chemo isn't going to reconize the cancer cells with the herceptin because now with the herceptin locked onto it or slower moving cells???
We also know that once our cells mutate within the cancer cells our immune system does not recognize the cancer as foreign, bad cells. But, when the herceptin locks onto our cancer cells it sees it as an intruder bad cell so it goes after it, and kills it. Herpectin does two jobs, stops the fast growing cancer cell and makes the cancer cell vulnerable to being attacked by our immune system.
Then why would I logically want to defeat my immune system... the killer cells which is needed to kill the cancer cells that has the HER2+ on it? Doesn't make sense to me. We know that the immune killer cells are one of our immune fastest growing cells. Why would I want to do chemo to kill the most important cell in my body?
I would feel irresponsible killing my immune system when I need it the most.
What I need to do is do everything possible to build up my immune cells so when I take the Herceptin the immune system does its job.
And...I've read enough testimonies and stories of bc women here at bco who have had chemo to see that it doesn't cure cancer. I've also learned from the testimonies at bco that a lot of women go from one chemo to another or trial chemo drugs and often they have a recurrence or side effects. Those who are early stage cancers who take chemo, who say, I didn't get a recurrence don't convince me because 75% of early stage women who take chemo would not have gotten a recurrence anyway.
I'm not going there. Again, if ever there are targeted therapies, I might be open. Right now...chemo for me doesn't make sense.
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eve: You shouldn't have to defend your decision to anyone if you have done the proper research and know all your options. It is your body and if you feel comfortable with what you are doing, it is the right choice for you. Why waste valuable time and energy with people who just don't get that.
I almost lost it with a friend last evening when she decided she was going to tell me what I should do. She has cancer...LLC and I have never tried to do anything but support her decisions about treatment. One of them was the fact that she wasn't doing chemo until absolutely necessary. Now she is trying to tell me what I need and don't need, and she knows nothing about the research I've done thus far to come to the conclusions about my treatment options. I listened politely to her thoughts, I know she means well, but in the end I think I have a better idea of what my treatment options are. I'm not going to let her negative energy take up space in my head.
One of the reasons we get "standard treatment" options only from BS's and oncos is that they are held to a standard by the AMA and can only use the information they are given in their guidellines. When I went to my BS he put the NCI Handbook in front of me and began talking. He recommended all the ACS sites, etc. He can only quote "standards of the industry". Fortunately he is using all the newer methods of treatment that have come out in the recent studies, so I am comfortable using him as my BS. When I talk to him about my diet and supplementation program, and the research I've done, I can tell he is impressed, but he doesn't encourage me. He did say that he thought conventional medicine was "behind the times" on these things, but beginning to catch up. This is about all he can say without violating his "code".
When I got up this morning, my surgical scar area looked terrific...it is healing fast, and I know that is because of all the things I have done up to this point to put my body in optimal condition. This is a new way of life for me now...just wish more people would realize that it is an important part of the total equation on defeating bc. or any other disease.
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Evebarry - everything you said makes perfect sense to me also. Are doctors so brainwashed in med school that they can't think logically anymore?
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I'm just popping in here for a second..about the Vit C thing (and possibly other supplements)..I take a bunch of them...my onc doesn't mind me taking them at all...in fact he encourages it...however, he did say that these could be hard on the kidneys...just a point to watch out for ladies..moderation is a good thing..in everything...
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Well call me Debbie downer but I believe it's a crap shoot. I think that know matter what people do to fight this disease, some are going to have recurrance and some are not. In fact I did everything right, ate well, excercised, stayed away from crap food and junk. Still I got BC. I am now joining a study on fatigue after treatment. Hopefully I will get my energy and MOJO back, if not well then it is what it is. I believe several things have to occur in the body for Cancer to develop, I could have been an organic plant eater and I still would have got BC. I also believe genetics plays a roll. If it's in your genes, it's in your genes.
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I think we all have cancer cells in our bodies, but in order for them to grow there has to be a triggering factor. In most cases, the immune system can keep them under control, but if the immune system is overtaxed for any reason, then they have an opportunity and they take it.
I can pinpoint the time that mine went out of control...it was two summers ago when I had several UTI's, five bee stings, shingles, and on top of all that a flu vaccine that I was encouraged to take by my dr., and then immediately following that, two upper respiratory infections. When my blood was tested that fall, my vitamin D levels were down to 27! The following year I got my bc dx. I just received an all clear on margins and nodes from my surgery, but that doesn't mean that I stop being vigilant about this disease!
I refuse to accept the fact that we can do nothing to keep cancer from attacking our bodies. I am doing everything possible to prevent this from happening again. Proper diet (anti cancer) and supplementation, exercise, and keeping my vitamin D levels at or above 70. I have an app't with a naturopathic doctor tomorrow and will follow his advice on what else I need to do. Chemo is out of the question for me, and I'm still on the fence regarding rads.
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Kaara, some breast cancer is slow growing (usually er/pr+ her2-) and can take up to 10 years to get big enough to be detected.
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