How to decide?
Comments
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Shira, almost all patients who have lumpectomy also have radiation. I wonder if your surgeon would have recommended a lumpectomy without radiation. You can ask. Your concern about rads is valid. I know some patients choose a Mx to avoid rads.
In terms of screening, my understanding is that one challenge with thermography is that there aren't guidelines or regulations training so it's hard to know who to go to. Maybe the people here who have used it can share their experience finding a qualified tech. If the goal is to avoid radiation, there's now an automated full-breast ultrasound that you can have done to supplement the mammogram. I believe it costs $200-300. -
Beesie: My oncotype score was 30. She said that put me at a 30% chance of distant recurrence. Chemo was recommended but not required so I turned it down. I really didn't want to take the AIs but my MO pushed me really hard on that so I agreed to give it a try. I couldn't tolerate the Arimidex so now I am trying the Aromasin. If I had had node involvement I would have done the Chemo. I've read that DIM does the same thing as the AIs and is natural and no SEs. I would love to see some independent studies on these drugs and the AIs vs. the ones that the pharmaceutical companies that push these drugs have. I just don't trust it. DIM is natural and can't be patented so the pharmaceutical companies can't make any money on it so they tend to push their drugs and discredit anything that is not "Standard of Care".
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Never having heard of it before reading that last post, I just looked up DIM. The literature says it "balances" good and bad estrogens, not that it makes them unavailable for those nasty little cancer cells. Sounds to me like something we all should have been taking before dx, and maybe something to take along with tamoxifen or AI's, but unless someone else has different info, I wouldn't want to trust any estrogen, balanced or not, all by itself with any hungry little cells I might have hanging around.
Considering that I have a lovely supply of tummy fat (the source of the "bad" estrogen, as I understand it), I'll definitely, ask my onc about advantages of taking this product right along with my arimidex!
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I'm in a study through the University of Arizona looking at the effectiveness of DIM supplements for women taking Tamoxifen. I don't know if I am getting the placebo or the real stuff but hopefully, down the road, other women will have more info to act on than we do now. I'm about half way through the 18 months of the study. I'll switch to AIs from tamoxifen just after I finish the study. Here's the link:
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Is this the same thing, Golden? I just went to your link and it seems they're speaking of DIME, a component of cruciferous veggies, as those who eat a lot of broccoli, cauliflower, and so forth seem to have less breast and other cancers. I am, of course, about to ramp up my ingestion of those goodies. I've only just heard of DIM, and just spent a few minutes "with" it, but it seems to be a product that balances good and bad estrogens, and the website I found did not mention where it was found.
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I am not taking DIM, which is a combo of veggies I eat anyway, because it is not advisable for anyone who is on a blood thinner (which I am) I guess it is too concentrated; all that vitamin K.
I am monitored monthly so if I have too many veggies, which thickens my blood, my dosage of Warfarin is adjusted. It would make this too difficult with DIM.
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Chinneymae, I'm surprised that you had the Oncotype test since you are HER2+.
According to the data from the Oncotype website, an Oncotype score of "30" means that you have a 20% distant recurrence risk (a range of 16% - 25%) if you take 5 years of Tamoxifen. So that matches what your oncologist told you about your risk if you take hormone therapy. The Oncotype doesn't provide a recurrence risk estimate if you don't take Tamoxifen - I don't know if the "30" score means a 30% risk without Tamoxifen (or an AI). Hopefully someone else can pop in to provide clarity on that. I do know that Tamoxifen has been shown to provide approx. a 45% reduction in recurrence risk overall (both local and distant). If that 45% is in the ballpark for distant recurrence benefit, just doing the math, it would put your risk of mets at about 36% if you don't take Tamoxifen. Oncotype Node Negative Report
The process of doing clinical trials on drugs is that it is the company that develops the drug that is responsible for doing the clinical trial. Before a drug can be brought to market, the company that develops the drug must prove that the drug works and they must incur the costs of proving this. Drug company clinical trials follow strict process and reporting guidelines. And ultimately it is the FDA (in the U.S.) who reviews the trial data and results and decides if a drug should be approved. I appreciate that you would prefer to have results from studies that weren't done by the drug companies but that's generally not how the U.S. process works (although of course trials are also done in university and hospital settings). Considering that you have a 30 Oncotype score and a fairly high risk of mets (a '30' is at the very high end of 'intermediate risk' on the Oncotype score scale), considering that you didn't have chemo, and considering that hormone therapy might be able to cut your risk of mets significantly, personally I think you would be taking quite a risk to go off hormone therapy and switch to DIM.
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Hi all,
Just wanted to comment on Thermography. So my situation has taken an unusual turn. They took one node, and it was clear, but later I found out it never turned blue, so it may not be a Sentinel Node, and they want go try again, but take up to 10 Axillary Nodes if nothing turns blue again
Looking for options, I called a thermography center. They don't do thermography for 3 months after surgery, but what was interesting was that they were booked through mid October, so there people using it!
.
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For those of you that were researching DIM. I had this website bookmarked and thought it was very interesting.
http://www.healthyalterego.com/index.php/ask-dr-huber/q-a/q-for-fighting-breast-cancer-is-there-any-problem-taking-dim-along-with-arimidex-tami/ -
Beesie: I've got to look at my path report but there was some question as to my HER2. At first they said it was borderline negative and then they said something about the Phish/fish test. I don't understand it. But they never mentioned herceptin at all. They only recommended the chemo, which I turned down, and the AIs. I can not and will not take the Tamoxifen due to a past history of blood clots. Also, I am post menopausal. I have been on the Aromasin for a little over a week now and so far I've only had a mouth sore and my tongue has a constant feeling like it's been burned. Don't know if anyone has every had that problem.
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Called "burning mouth syndrome" which is associated with many drugs, "natural" and otherwise. Sometimes it goes away, sometimes it doesn't until the drug is stopped. Sometimes it shows up in post menopausal women for no particular reason and can last for 10 years or so....often associated with TMJ probelms. I have it associated with TMJ. Had it so far for 7 years.
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Chinney that article was so informative! Thank you!
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Thanks Bluepearl. I had never heard of that before.
HLB you are welcome. I thought it was very interesting. If this Aromasin has too many SEs I may just start taking the DIM. -
Chinneymae, Fascinating article on DIM and estrogen that you posted! I never expected to get that thorough of a explanation on estrogen and cancer...ever! Most appreciated. Best to you in whatever you decide to do. Were right here with you!
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Thanks Light:
I hope it helped. It sure helped me understand it better.
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Your feelings are mine exactly.
I want to know if there are studies with women that have such an small non aggressive tumor found early, what the real statistics are between recurrence if they use rads and/or drugs or not. Most information seems to lump many different stages and sizes together and they come up with how much better the recurrence rate is with traditional treatment.
I would like to know if anyone knows these statistics so I can make a better informed decision. I really do not want to pump my body with tons of what appears to be dynamite to kill a small bug. -
Hi ritagz
I have been on a long journey in deciding since I wrote the original post, and part of that has been a quest into trying to get at the real risks, and pro's and cons.
There are calculators out there, but I really wanted to hear it explained in more detail. Then there is a calculator on a website called Adjuvunt (sp?) that a doctor has to do for you. My Oncologist mentioned it to me but when all my results started coming in better that she thought, including my Oncotype DX #, she said I didn't need her to do Adjuvunct as my oncotype dx is my result. She knew I was questioning treatments so my guess is that she didn't want to do the calculator as it might have made me skip treatments.
Then I ended up with two surgeries, two sets of doctors, and three radiologists, which is kind of a waste since I'm probably skipping radiation (tough decision, postponed for one last week to be sure). This gave me a chance to ask many questions, and I learned an important question to ask that helped (although it would have helped more if the docs answers were more consistent!).
So if they tell you such and such lowers your risk of recurrence by 50% (or any %), ask them 50% of what, as in my opinion the reduction % doesn't mean anything without putting it into #s. Maybe get the # of years and type of recurrence it effects as well (so if my chance of local recurrence without radiation is 15%, and radiation reduces that by 50%, I now have a ,7.5% chance of local recurrence). Also, I got so many different answers, that I figured the truth lies somewhere in the middle.
Then not sure where you are in your journey, but the Oncotype Dx # can help give an idea of the likelyhood or recurrence, although my first Oncologist said it only tested if chemo was needed and my second said it was an indication about how my cancer cells are and the likelihood of the cancer coming back based on that (and she explained it better than I did).
For me, I felt like they used #s in the scariest sounding way possible to get me to go forward, or maybe its always like that not sure. -
Hi shira,
thanks for the answer. I was up at 3 in the morning writing because I could not sleep.
I did not get the oncotype result - I think it comes after the surgery. the aggressiveness of my tumor,-Ki-67b was at less than 3% and I told the doctor that if I were 70, I wouldn't even be here. It grew less than 1/2 cm in 3 years.
but now that I am here, my gut is that if I have a low oncotype, and all else stays the same, there are clean margins and no lymph node involvement, I would just as soon take my chance at the % of whatever, than go through so much drug and radiation therapy.
I was one of those that did not even go for mammography, and when I did find the lump 3 years ago and it was confirmed with an ultrasound and mommy, they thought it was just a lymph node, so the mammo did not save my life or even add years. only lately after I felt it grow did they do the biopsy, and even at that point the notes said that this is probably benign.
I am sure my doctor will probably disagree with my lack of treatment, even though she seems to be pretty balanced on explaining the severity. My husband is completely supportive - he is more into the lifestyle and alternative medical approach, I guess I just wanted to know if I was being completely irresponsible by not taking the "proven" regimen.
years ago when I had serious ankle surgery, I had severe pain which lasted months. I was given a drug Vioxx for the pain that I was supposed to talk 3X daily for months. I took a few pills here and there just when the pain was bad and not the rest. The doctor insisted it worked better if taken daily but I am not too good about those things. Lucky for me, as they found heart disease a serious side effect with long term use and have since pulled the drug.
something here feels the same. 5 years of drugs, side effects and possible secondary problems, for a condition you have cut out, even with the risk factor slightly higher, just doesn't feel right to me. all drugs are safe till they aren't.
anyway, if feel like I am rambling because i don't know anyone other than my husband that would support this decision, and if all indications stay the same, your advice and response has helped to clarify some of the issues. the rest is yet to be decided, thanks again and let me know what you end up doing.
I am curious if there are long term survivors that did not do the therapy either and feel it was the right decision -
Shira, I feel for you, I really do. My cancer was so advanced that at the beginning all the docs were mostly concerned about whether it had already metastasized. When they talked numbers, they tried to fudge the bad prognosis, just so I wouldn't completely lose my courage. In my case, because of the high stage, large tumor etc., the choice is so much easier, because the gain from each of the therapies is BIG. -
Hi ritagz,
I hear you!! I message privately with one person from this board who walked out of her first radiation appt once she saw the risks listed on the disclaimer form that they hadn't told her beforehand. She had a similar cancer, although might have 2 centimeters and grade 1, and she didn't have an Oncotype dx test.
Well that was 5 or 6 years ago, and no recurrence. She does some preventative things, and she gets thermography so she can keep an eye out earlier.
I have actually been trying to decide and going through this since late August! I was ready to go natural as I started with grade 1 stage 1, but after surgery, it went up to at least 2 cm's, grade 2, dirty margins, and they couldn't find my sentinel nodes.
So, I switched doctors, and then I stalled as they said the only way to test node status was to do an Axillary Node dissection. But I went ahead as node status seemed to be the only way I would be comfortable making decisions, and the docs of course need need tgat info.
It turns out I am glad I went ahead, minus the greater potential for lymphedema. They took 3 cm more for my second lumpectomy, all clear, and 16 nodes, all clear. So, I sort of came full circle, but with lots of time to read in between surgeries, dangerous!!!
For me, the people in my life and the docs reactions make it very tough to feel confident in my decisions, and is the reason I waiver so often. If your husband is supportive, that will help (I have strong minded people that like to tell me I am doing the wrong thing on both sides of the fence!).
If you can find some natural or holistic docs that might help too, although I find the natural side even trickier as holistic docs can't advise you with regards to conventional, and there is so much variety (I have seen three natural types, for now sticking with the only one that mentioned and knew about estrogen as a factor).
I am comfortable not doing tamoxefin, logical or not (and they said it's 10 years now!!!!!). It seems like there are natural options and the only way I'd be able to make myself swallow a pill with so many possible side effects is a very strong belief that it is absolutely necessary, which I don't have. It sounds like you might be the same way. Radiation is for me the bigger decision and I no matter which way I go, i think I'll always be a little nervous. I actually got as far as the set up appt, and when I was sitting in the CT scan that nobody thought was important enough to give me a heads up about, I did not at all feel peace with my decision, so if i listen to my gut, i will be more comfortable with the risks of not doing it than doing it (oh, and my Oncologist will be very unhappy with me once she finds out, as someone mentioned above, when you "chose" Lumpectomy, to them you are also choosing radiation, so be warned!).
Feel free to private message me if you would like. I don't have any answers but we could ask questions together! -
Oh by the way - I didn't have a mammogram till 57 and they found the lump when it was barely 1/2 cm but thought it was a lymph node and told me not to worry.
so dont beat yourself up - you did still catch it really early -
About radiation. Please look past the local recirrence statistics which are about 2% difference between the radiated and the unradiated. Look at the Overall SURVIVAL statistics. Scroll down to see there is no survival benefit. Benefit is defined as a small reduction in local recurrence.
This came from a breastcancer.org article:
[article accessed from the breastcancer.org web site August 17, 2010]
http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp The article has been removed from this page since.
---------------------------------------------------------------------------------------------------
Radiation Benefits Women with Small Cancers After Lumpectomy
"After lumpectomy alone with clear margins, chances are that you are cancer-free. But your doctor will talk
to you about treatment you can have just in case some cancer cells were left behind.
In this situation, getting the best breast cancer treatment can feel like a balancing act: You want to do as
much as you can to get the cancer out and lower the risk of it coming back. But you'd like to avoid
uncomfortable side effects that might lower your quality of life.
In this study, the researchers wanted to see if there was a group of women who could get just hormonal
therapy after lumpectomy and skip radiation therapy. So they looked at a group of post-menopausal
women whose cancers are the type associated with the most favorable outcomes:
hormone-receptor-positive,
smaller than three centimeters, and
node negative.
If you're in this group, you have a very low risk of the cancer coming back.
As these results show, even women with a very low risk of recurrence can benefit from radiation after
surgery. This means that so far, no group of women has been found that would NOT benefit from whole
breast radiation.
Remember that no single treatment plan is right for everyone. If you want to do everything possible today
to lower the risk of ever seeing the cancer again, then radiation after lumpectomy may be a very important
step for you. If you have a small cancer that has been removed with wide and clear margins of resection
and you're more concerned about how radiation will affect you, you may want to talk to your doctor about
skipping radiation and just taking hormonal therapy. Your risk of the cancer coming back in the same area
is likely to be higher, but how long you live will probably not be affected.
Instead of having whole breast radiation, you can also talk to your doctor about the potential role of partial
breast radiation. Studies are now under way to test the effectiveness of radiation delivered just to the area
around the cancer. This is called partial breast radiation. Promising results after four years of using this
approach have led to a clinical trial that is now comparing partial breast radiation to whole breast radiation.
The trial is called the National Surgical Adjuvant Breast and Bowel Project (NSABP) B-39 study. Talk to
your doctor—you may be able to enroll in the NSABP B-39 study.
Juggling risks that may affect your life can be very uncomfortable. You need to talk to your doctors and
family, and consider all your options, to decide on the plan that's right for YOU.
The February 2006 Research News section was made possible by an unrestricted educational grant from
Genentech BioOncology.
Research News on Radiation Therapy
ASCO: Radiation Short Course Now Breast CA Alternative
ASCO: Value of RT After Lumpectomy Questioned
Post-Mastectomy Radiation May Be Underused
SSO: Post-Mastectomy Radiation May Be Overused
Shorter Radiation Course Matches Standard for Breast Cancer
More Research News on Radiation Therapy (25 Articles)
Reviewed study: "Radiation Benefits Women with Small Cancers After Lumpectomy" by M. F. X. Gnant and
others, San Antonio Breast Cancer Symposium, December 8, 2005, Abstract 8
Is this for me? If you have small, early-stage invasive breast cancer and are wondering if you can skip
radiation after surgery, you might want to read this article.
Background and importance of the study: Breast-conserving surgery lumpectomy followed by radiation—
has become a standard treatment for women with breast cancers that:
are small to medium in size (usually four centimeters—about two inches—or less in diameter),
are limited to one place in the breast, and
can be removed with clean margins.
Radiation to the whole breast after lumpectomy has been recommended for all women who choose breast
conservation (instead of breast removal, or mastectomy), regardless of the women's age. This "standard
of care" recommendation is based on many large studies that compared lumpectomy plus whole breast
radiation to lumpectomy alone. These studies showed that radiation therapy after lumpectomy significantly
reduced the risk of the breast cancer coming back in the same breast.
The studies also found that women with node-negative disease lived equally long lives after lumpectomy
alone or lumpectomy plus radiation. Women with node-positive disease had an increase in survival. The
main benefit from radiation is to lower the risk that cancer might return in the breast, requiring more
surgery and possibly other treatments.
Other treatments may be given after surgery. Hormonal therapy is a medicine given after surgery for
hormone-receptor-positive breast cancer. Hormonal therapy:
lowers the risk of the cancer coming back,
improves survival after surgery, and
lowers the risk of developing breast cancer in the other breast.
With all these different types of post-surgery treatments, it would be helpful to know who needs radiation
treatment and who might do fine with hormonal therapy alone. Several studies have looked at whether
hormonal therapy offers enough protection against recurrence after lumpectomy for women with small
cancers—eliminating the need for radiation. This could spare some women the inconvenience, side
effects, and cost of radiation.
The study reviewed here continues to look at this important question. Keep in mind that ALL of the women
in this study had relatively small cancers and no lymph node involvement. They then received hormonal
therapy and about half received radiation too. So this study does not address the role of radiation alone
without hormonal therapy.
Study design: Austrian researchers used the results of two studies conducted by the Austrian Breast
Cancer Study Group (ABCSG) to identify groups of women who had an extremely low risk of recurrence
(the breast cancer coming back).
All the women were post-menopausal and had breast cancer that was:
hormone-receptor-positive,
smaller than three centimeters, and
node negative.
All the women had lumpectomy followed by different types of hormonal therapy:
In ABCSG-6, 698 women took tamoxifen with or without aminoglutehimide (an old-fashioned kind of
aromatase inhibitor).
In ABCSG-8, 875 women took either five years of tamoxifen or two years of tamoxifen followed by three
years of Arimidex (chemical name: anastrozole).
About half of the women in each study were randomly assigned to receive radiation after lumpectomy and
before hormonal therapy. The other half had lumpectomy followed by hormonal therapy—without radiation.
Results: After about 10 years of follow-up in the ABCSG-6 trial, the cancer came back in
3.3% of the women who had radiation, compared to
5.2% of the women who didn't receive radiation.
However, this difference was not significant, meaning it could be due to chance rather than due to the
radiation.
After about four years of follow-up in the ABCSG-8 trial, the cancer came back in
0.24% of the women who had radiation, compared to
3.2% of the women who didn't have radiation.
This difference was statistically significant, meaning that it was likely due to the radiation and not just to
chance.
There was no difference in overall survival in either trial between women
who had radiation treatment and women who did not.
Conclusions: The researchers concluded that radiation therapy to the whole breast can help reduce the
risk of recurrence in women with small hormone- receptor-positive breast cancers, even if they receive
hormonal therapy after lumpectomy.
-----------------------end of breastcancer.org article---------------------- -
Another study out this month from JAMA...
Heart Disease Risk Appears Associated With Breast Cancer Radiation
Among patients with early stages of breast cancer, those whose hearts were more directly irradiated with radiation treatments on the left side in a facing-up position had higher risk of heart disease, according to research letter by David J. Brenner, Ph.D, D.Sc, of Columbia University Medical Center, New York, and colleagues.
Several reports have suggested links between breast cancer radiation and long-term cardiovascular-related deaths, according to the study background.
Researchers examined the radiation treatment plans of 48 patients with stage 0 through IIA breast cancer who were treated after 2005 at the New York University Department of Radiation Oncology. They calculated the association between radiation treatment factors, such as mean cardiac dose, cardiac risk, treatment side, body positioning and coronary events.
According to study results, the highest coronary risks were seen for left-sided treatment in women of high baseline risk treated in the supine (lying down, head facing up) position. The lowest risks were for right-sided treatment in low-baseline risk women. In left-sided radiation, prone (lying down, facing down) position reduces cardiac doses and risks, while body positioning has little effect in right-sided therapy (where the heart is always out of field).
"Because the effects of radiation exposure on cardiac disease seem to be multiplicative, the highest absolute radiation risks correspond to the highest baseline cardiac risk," the authors conclude. "Consequently, radiotherapy-induced risks of major coronary events are likely to be reduced in these patients by targeting baseline cardiac risk factors (cholesterol, smoking, hypertension), by lifestyle modification, and/or by pharmacological treatment."
###
(JAMA Intern Med. Published online October 28, 2013. doi:10.1001/jamainternmed.2013.11790. Available pre-embargo to the media at http://media.jamanetwork.com.) -
Radiation for early-stage women has a definite survival benefit, especially Regional Node Radiation for those who are node-positive. This survival benefit must be taken into consideration when looking at your personal risk for cardiac issues. If you have a strong family history of cardiac illness, already have cardiac issues, are over 50 years of age, smoke, have high blood pressure/cholesterol, then you must weigh the survival benefit of radiation against your personal risk. Talk to your treatment team. -
for me the bigger question is not the radiation, especially if it is to the right breast, and with the new protocols that now reduce the overall radiation amount, I feel that even though long term may still be questionable, for me short term benefits - 10 years - is a reasonable benefit/risk factor for me to go that route.
What is more disturbing is the lack of information regarding the estrogen hormone therapy side effects both short and long term.
These drugs, especially those for post menopausal women are not around long enough to substantiate statistically that they are as affective in treatment for early breast cancer, relative to those women that are choosing not to take them. I am talking about a lumpectomy with stage 1 tumor, node negative and low Oncotype score, clean margins, and radiation therapy after surgery.
what are the real statistics of recurrence/life expectancy without the hormone therapy? From what I have ready these drugs are too new (other than tomaxafin which is often no logner given to post menaupausal women) to give any real long term results, and the immediate side affects seem to be significant in a large portion of women. 5-10 years of pumping this amount of drugs into my body, seem to be the greater risk for me in the long and short run.
all drugs are safe till they are not. Estrogen replacement drugs for menopause, DES, Vioxx, the list goes on.
I feel that at this point the medical profession does not have enough proof that all women taking the newer hormonal therapy, for what seems to be prophylactic care as opposed to curative care, are medically better off than thoe not taking them.
These women are at a substantially greater risk of developing side effects that may have more long term damage. But if someone has knowledge of recent studies that would help me see the other side, I would love to read them. I would like to make as best informed decision as possible and unfortunately it is hard to find a doctor that does not follow the accepted regimen today. -
Rita,
Your points are well taken. The problem that I see is that if a drug shows promise all through the lengthy clinical trials process, people clamor for it to come to market. To really look at long term usage, most drugs would have to remain on trial, after phase III for 10+ years. It really does pose a dilemma and but facing serious illness/pain are often willing to take the risk. -
Rita, I think that is a very reasonable question. As I have said many times by now on these boards, if my cancer had been a much lower stage and with no nodes involved, treatment choices would have been much harder to make, for me anyway. -
I have just completed 4 rounds of chemo that was brutal on my body and evey side effect possibe. My tumor was 3cm grade 3 and considered stage II with no nodes involved. I am 49 years old and have been postmentopausal for a year. I listened I my MO and did the chemo but not so sure I want to do the Femara that he has recommended. I am so nervous about the side effects. My MO mentioned tat this as important as the chrmo. I have been through enough and just want to lead a new normal life. Has anyone been on Femara? -
Togetherness, I am on femara and I have been on it for about 18 months by now. The SEs can be anywhere from really bad to almost non-existent. Mine are somewhere in the middle, and they peaked around 6 months into the drug. At this point I have some mild joint stiffness and pain on and off. All the rest have faded or gone away (some sleep issues and a few others).
Femara really is at least as important as the chemo. My advice would be to try it and keep an open mind. If you find that 6 months in, you really can't deal with it, you can always stop. There is a whole thread just on femara, so you can ask there as well: http://community.breastcancer.org/forum/78/topic/726592?page=171#idx_5120 -
side effects are effects. & as for hormones: what about birth control pills?
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