Stage 1, grade 1 and pre-menopausal
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Violet,
I have neuropathic pain on left side too and similarly it started before my mastectomy. I have yearly MRI breasts which have been ok.
Re aches, have you had vitamin D, CK ( muscle enzyme), calcium and ESR checked? Also are you peri-menopausal? There are many causes of muscle/bone aches so a proper evaluation will help identify the cause. If your bloods are ok I don't think you will be offered CT/ PET. They expose you to a very large amount of radiation and therefore should be avoided unless there is concern about the other test results or clinical signs
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Annice,
My pain/neuropathy started AFTER MY MASTECTOMY. ..BEFORE my implant/exchange surgery. Just want to clarify that...:)
The pain began to heighten during my fills...but I don't believe it's from the implants, since the pain started before I had Exchange surgery.
I just read a study on PMPS that found that patients who had SEVERE PAIN after their Mastectomy surgery are more likely to go onto to develop PMPS. I had ACUTE uncontrolled pain after my BMX...even with morphine...they didn't get it under control until 24 hours later when my Onc. Surgeon stopped by my room and told them to UP the morphine AND give me 2,10 mg. Norcos every 4 hours. The nurses were afraid to go up w pain meds cuz of possible respiratory issues. It was HORRIFIC PAIN --horrible experience! !! My Onc. knew what he was doing...:) I ended up in hospital for 4 days so they could make sure my pain was under control.
I went home w 2, 10 mg. Norco prescribed every 4-6 hours...
Violet
My Vit D is normal but I'm taking supplements to elevate it. I also had a bone density test which came back normal.
What is ESR? & Muscle enzyme check?
Should I have had blood work done at 6 month checkup?
I didn't have a tumor marker test either. ..?0 -
Lav ~ I did not do radiation. ONE of the many reasons I chose mastectomy was to avoid radiation. Regarding the tamoxifen. I don't have any noticeable side effects. However, I do take effexor. (Way before BC I did have problems with anxiety) Luckily, one of the bonuses of that medication is that it is supposed to help with hot flashes.
Also my oncologist wasn't that worried that my Ki67 score from my original biopsy pathology was high yet my oncotype was low. Interestingly enough my mitosis score was 3 for my biopsy path with a grade score of 3...while my surgery pathology had a mitosis score of 1, which ended up giving me a grade of 2. Tumors can vary depending on what microscopic portion they are examining. I felt more confident with the readings from the oncotype test as it measures a lot more information.
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Hi ladies. I have been reading the many posts on this thread to make myself feel better about my treatment plan... I am 37 and was diagnosed in May with a 1.5cm single focus IDC, clear lymph nodes, no LVI, BRCA and BART negative, >95% ER/PR positive, and an Oncotype of 13. One top clinical center called it a Grade 2 and another said Grade 1. I got 3 opinions (Cleveland Clinic and Sloane Kettering included) and all 3 said they they "lean away from chemo" for me. While certainly great to hear, I keep reading about the potential different biology (more aggressive) of cancer in women under 40. I have 2 young children and want desperately to have the privilege of raising them. I have a healthcare background, so I certainly understand the potential risks of over treatment, but I can't quiet the voice in my head saying that I'm not doing enough to beat this beast into remission! I had a MX (will do other side as soon as completely healed from the first) with good margins and am on tamoxifen and zoladex, but can't say that the side effects are terrible. This makes me worry that maybe it's not working that well? I have some hot flashes (mostly at night), but that's about it... Ugh, the mental/emotional toll of this is so much higher than the physical!
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Nan, I'm sorry for your diagnosis, especially with young children. It's scary enough at any point but I well remember the way I felt when my kids were small. I've read that side effects on Tamoxifen do not have anything to do with its effectiveness, either way. I haven't looked into Zoladex as much but I'd be surprised if it were any different. Congrats on the low side effects. I'd be very interested to hear more about this question from others.
As for the chemo, since your doctors said they were leaning against it, that means they could see their way to doing it. They know what the implications of your age are and still thought the outlook for you is good without chemo, but I've learned from the chemo forums, to my surprise, that plenty of people with about your same parameters opt for chemo just out of a strong sense that they want to do all they can. Have you asked your main oncologist how he/she would feel if you said you really want to do it, for that reason? I'm curious to know what the answer was or would be.
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Thanks for the response, Runfree. I did ask all 3 oncologists what they would do/say if I insisted on chemo. My main doctor said that "he could be talked into it because of my age" but that "he recommends against it." I asked the infamous question about what he would do if it was his wife or daughter in my situation and he said he "absolutely would NOT do chemo with that profile." I was comforted by that for a little while, but - as seems to be so common with this disease - the fear and doubt crept back in. My 2nd opinion onc said that she would either do TCx4 or tamoxifen + ovarian suppression. She took my case to their tumor board and they decided no chemo, the rest of the docs on the board thought tamoxifen alone was enough, but she said she still stood by her recommendation for ovarian suppression. The onc from Sloane Kettering said he would only do CMF chemo if I insisted and that I couldn't talk him into TCx4 (he said that he is just not "mainstream" - whatever that means). So, that's how I ended up going this way - had even 1 of them recommended chemo, I would have done it. But, now I am second-guessing and probably will forever. Not sure if I would necessarily have any peace of mind having done chemo either though? Only a cure could provide that, right?! Here's hoping for a cure - if not in my lifetime, hopefully in my daughter's!
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Thanks for the response, Runfree. I did ask all 3 oncologists what they would do/say if I insisted on chemo. My main doctor said that "he could be talked into it because of my age" but that "he recommends against it." I asked the infamous question about what he would do if it was his wife or daughter in my situation and he said he "absolutely would NOT do chemo with that profile." I was comforted by that for a little while, but - as seems to be so common with this disease - the fear and doubt crept back in. My 2nd opinion onc said that she would either do TCx4 or tamoxifen + ovarian suppression. She took my case to their tumor board and they decided no chemo, the rest of the docs on the board thought tamoxifen alone was enough, but she said she still stood by her recommendation for ovarian suppression. The onc from Sloane Kettering said he would only do CMF chemo if I insisted and that I couldn't talk him into TCx4 (he said that he is just not "mainstream" - whatever that means). So, that's how I ended up going this way - had even 1 of them recommended chemo, I would have done it. But, now I am second-guessing and probably will forever. Not sure if I would necessarily have any peace of mind having done chemo either though? Only a cure could provide that, right?! Here's hoping for a cure - if not in my lifetime, hopefully in my daughter's!
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Nan, thanks for the added detail. There's no way all these doctors want you to have a recurrence, so if they are all saying chemo isn't going to help you, I would say take their advice--but then I was terrified of chemo. I have a friend who had a very bad experience with it and her story was fueling my terror. Granted, she's a highly med-sensitive person, and I'm not especially med-sensitive. But still. I think if you decide against chemo for all the reasons these many doctors have given, but you still want to feel that you're throwing the book at it, you could go with the most aggressive thing anyone has recommended, Tami + OS. But it does sound as though most of them think Tami alone would be plenty. This is all GOOD news. Just remember that BC is a very wide spectrum, and you are way, way on the sunny end of that spectrum, as am I. The very commonness of BC, while horrible, is also an asset for the rest of us, because there are a lot of comparable cases for anyone's situation. There is a very great deal of information behind these doctors' recommendations. In fact, there is a doctor at Dana Farber in Boston, Ann Partridge, who is focusing her research on quality of life issues in long-term BC survivors and she specializes in women diagnosed before age 40. What that tells us is that there are so very many long-term survivors among those youngsters that it's worth doing research on quality of life. More good news. I know it's hard to banish the fear. I totally know. But when you do talk back to the fear, you can have a lot to say.
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Nan54, if you have top specialists advising you against chemo, why do you not trust their experience and knowledge? They treat thousands of patients. Chemo is NOT "doing all you can" -- some doctors and researchers believe that in some cases chemo can make cancer tougher. In other words, chemo will kill SOME cancer cells, but the ones that remain become resistant to chemo and proliferate faster. It seems to be a trend for cutting edge cancer centers to recommend against chemo for Stage I and II. I have Stage IV and my docs so far recommend against it. Remember oncologists are seeing the gamut of patients, including Stage III and IV patients. I suspect they are seeing patients who did chemo 3-4 years ago, thinking that would cure the ugly beast and now it's returned. It's not true that the most brutal treatment gives you the greatest chance of survival. We women with children are used to sacrificing for the greater good but that's not what's always required with cancer. Look at the statistics for how often young women who undergo chemo have a recurrence. I hope you don't read my comments as critical. My heart goes out to you. I don't want any woman needlessly doing chemo. You are already doing so much to stop cancer. You can always choose it later for treatment. Wishing you many happy years with your children ... and grandchildren.
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Nan... The most difficult part of the journey following a cancer diagnosis is choosing a treatment plan and then coming to terms with the plan and moving on. The moving on is difficult because we are never completely sure if we made the right decision.
Last year on this discussion board we had a sister who was hell bent on getting chemo. The only problem was none of her doctors recommended it....including doctors at Sloan! She reminded me of a woman who Dr. Otis Brawley describes in his fantastic book, How We Do Harm. I highly recommend that you read his book. His perspective on cancer treatment and care is unmatched by any other author on this important topic. Perhaps after reading his book you might feel less worried.
Good luck!0 -
Sooo agree with Tarhee and Vor...
And EVERYONE would do well to read Dr. BRAWLEY'S book...I have the sucker marked up throughout, that's why I don't like to get particular books from the library...;) This one is a keeper that I'll reread and go back to.
Violet0 -
Thanks for your thoughts, ladies. I just ordered Dr. Brawley's book to read on my iPad - looking forward to starting it. What you're saying makes perfect sense to the logical side of me (which is how I typically make my decisions). Unfortunately, this cancer thing messes much more with the emotional side!
Do any of you have any thoughts about the mild side effects of tamoxifen + zoladex relating to its efficacy?
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Violet, ESR is a measure of inflammation, CK is released from inflamed muscle so they help exclude other causes of musculoskeletal pain
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Nan there is no evidence to suggest mild side effects indicate reduced efficacy! Side effects have multi factorial causation. I have no side effects at all with tamox but noticed sweats with zoladex which seem to lessen with time.
Chemo is no magic bullet and risks and benefits must be weighed up carefully as others have indicated. Over treatment (with serious consequences down the line) is possible with stage 1 and 2 BC. If your specialists felt you would benefit from chemo they would certainly offer it to you. It is a much harder decision not to treat than to treat with chemo, ESP in premenopausal women
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Nan, FWIW, you and I share similiar stats and recommended treatment plan. My onc (at Stefanie Spielman Comprehensive Breast Center, Ohio State U.) said in my case, the benefit of chemo for women w/my stats is the chemopause (menopause caused by the chemotherapy). So, instead she is (well, I am) achieving that through the zoladex.
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Nan,
Glad u are reading Brawley's book. I'm starting it again for the 2nd time. I think you'll understand sooo much more after reading his book AND I think you'll feel much better about WHY your docs don't think chemo is appropriate for you in your case...;)
Ill be forever grateful to VOR for recommending it to me.
I wish I could buy it for EVERYONE here!
Best I/ we can do is spread the word to others by encouraging others to READ his very important book. I'm having my Mum, sister, & older daughter read it.
It's insightful for those who don't have cancer as well.
***The part about the pros & cons (sometimes harms done)
concerning SCREENINGS of PROSTATE CANCER, in particular, blew my mind!!! My father-in-law died of prostate cancer...well, more like from the complications/harms done from UNNECESSARY TREATMENTS for PC...sigh. And the whole UROLOGY Sub Specialty & how its bias influences prostate cancer screenings & guidelines will make you choke.
The part about Medical Guidelines--the history of their development, how they are decided upon, the various separate ones, how they can lack oversight & are influenced by bias/ conflict of interest /monetary gain issues---and how oversight boards were put in place finally/but still a HUGE struggle with some...made my
head spin.
AND, the history of HOW THE BREAST CANCER grassroots movement came to be, just mesmerized me!
One will learn much by reading this book...I promise...:)
Violet0 -
Annice,
WHY do many BC patients believe that the worse their SE's from Tamoxifen & similar treatments ARE, that it MEANS/EQUALS ...MUST MEAN that the treatments MUST BE WORKING...that it must mean the treatments are even more beneficial...and EFFECTIVE for
their cancer?
...As opposed to: if they have LESS AWFUL SE's, then it might/ must mean that the treatments perhaps are NOT very effective for them?
WHERE does this info. come
from?
Thanks...;)
Violet0 -
Hello ladies Im glad to inform you all that I just got my Oncotype result and its 13! So my Oncologist said its a very good score and definitely no chemo for me. He said radiation is a must since they dint do a masectomy and to evit any cancercell being left behind. So i have to go to. Radiologist to consult him on that and yes my Onco says with the treatment of tamo my Onco score would go down to 8per ent which is a very good score.
Nan i would suggest you to not do the chemo either. The psychological effect that leaves on your kids wont be good and Ive been readingabout rather making changes in our diet and exercising aand our way of life. Like i read about this Ketogen diet or the meditteranean diet which really helps. Certain vitamins and minerals and eating the right fruits and vegetables also helps alot. Youll be surprised at how much our eating habbits can help cure us. Check out this website for recipes that someone posted for healthy food recipes. Never know sometimes its faith, positive attitudeand d right food along with treatment that can help us the rest is in God's hands. I lost a brother at the age of 34. Whats meant to happens happens in the end. Live for today why worry and kill ourselves over a tomorrow that we havent seen yet. http://www.ibreatheimhungry.com/portfolio/low-carb-soup-and-chili-recipes. . Hugs to all of you. Its celebration for me today:))0 -
Lav, I'm delighted for you. I have no idea where I would have come out with Oncotype since it didn't exist when I was diagnosed, but I'm glad you are moving forward with such positive news.
ReneeinOH, remarkably, it is extremely rare to see any acknowledgement on a bc forum from anyone with breast cancer, telling others in such understandable language what one of the main functions of chemotherapy is. A pat on the back to you (and to your onc).
The imagery of chemotherapy as being a weapon that can "wipe out cancer cells" is overwhelmingly a persistent belief among cancer patients, and yet it is still not considerated to be proven to be the reason for preventing metastasis. Chemotherapy is not effective for stem cells.
To Others:
That is why it is so hard for me to accept that a scientific body like the NCCN remains stubbornly unwilling to recognize that it may be far less harmful and equally effective for some patients who are HER2 positive to just do ovarian ablation plus trastuzumab without chemotherapy. But no effort is being made to provide such a trial for adjuvant treatment for that patient group. None.
It is very positive to hear truth spoken.
A.A.
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Thank you AlaskaAngel. I dont know if what Im thinking is right but if Estrogen being high is why we need to take Tamoxifen and estrogen is produced by our ovzries isnt it better to just shut down the ovary thru surgery than go thru side effects of tamo? Im planning on asking my Pnc this question. Im 42 My kids are 19 and 16 and due to being diagnosed with pericarditis which is retention of water in the outter valve of the heart and. Y asthma condition I de ided it best not to have more kids. So isnt it a better option or is there something Im not understanding well? The side effects of tamo for a person like me that has had a heart condition in d past asthmatic plus d mood swings and depression I feel are a greater problem done going thru surgery to remove my ovaries....
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Lav, I'm interested in what others say, but my MO said the side effects of Tamoxifen for most people are less than the side effects of ovarian suppression or removal.
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Lav,
There are side effects to each choice, unfortunately. Your circumstances raise questions I'm not qualified to answer, but hopefully the original poster, Annicemd, might. There are different choices available and I'm not sure which one would be best for your situation. But the point is that one way or another, becoming menopausal is part of the goal. You personally probably have already seen the choices, but I'll copy them here just in case, and for others.
Tamoxifen is a "SERM". Selective estrogen receptor modulators (SERMs) bind to estrogen receptors, preventing estrogen from binding [to the estrogen receptors]. Examples of SERMs approved by the FDA are tamoxifen (Nolvadex®), raloxifene (Evista®), and toremifene (Fareston®).
Other antiestrogen drugs, such as fulvestrant (Faslodex®), work in a somewhat different way to block estrogen’s effects. Like SERMs, fulvestrant attaches to the estrogen receptor and functions as an estrogen antagonist. However, unlike SERMs, fulvestrant has no estrogen agonist effects. It is a pure antiestrogen. In addition, when fulvestrant binds to the estrogen receptor, the receptor is targeted for destruction.
Blocking ovarian function: Because the ovaries are the main source of estrogen in premenopausal women, estrogen levels in these women can be reduced by eliminating or suppressing ovarian function. Blocking ovarian function is called ovarian ablation.
Ovarian ablation can be done surgically in an operation to remove the ovaries (called oophorectomy) or by treatment with radiation. This type of ovarian ablation is usually permanent.
Alternatively, ovarian function can be suppressed temporarily by treatment with drugs called gonadotropin-releasing hormone (GnRH) agonists, which are also known as luteinizing hormone-releasing hormone (LH-RH) agonists. These medicines interfere with signals from the pituitary gland that stimulate the ovaries to produce estrogen.
Examples of ovarian suppression drugs that have been approved by the U.S. Food and Drug Administration (FDA) are goserelin (Zoladex®) and leuprolide (Lupron®).
(Once again, even in a section written to specifically outline the various methods of ovarian ablation, there is no mention of the effect on the ovaries by chemotherapy, despite ovarian ablation being one "side" effect/main effect providing protection by use of chemotherapy.) It is part of a silent censorship about the effect of chemotherapy that is so misleading, confusing, and misunderstood.)
I wish you the best with your choice. One possible way of being able to measure how effective treatment reducing the effect of estrogen on the breasts is, may be by measuring breast density as you go along. Google breast density and Karolinska Institute and tamoxifen, to see the studies they have been doing. (Measuring breast density may be one way to tell.)
A.A.
P.S. One factor women who are considering various forms of ovarian ablation and ways to deal with estrogen are now having to think about is, do I really want to do this for 10 years, or do I want ovarian ablation by surgery. It is becoming a different choice to make than it has been previously.
And for those who don't want to subject their system to extensive chemical exposure in particular, the choice can be very meaningful.
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Thanks AlaskaAngel will definitely check it out and discuss it with my Oncologist as well to see what hes opinion on the matter is... Thanks for patience n time.
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Violet 1 and Annicemd,
Wouldn't it be interesting to see results of a clinical trial that measured side effects, breast density, and the use of a drug like tamoxifen with outcomes, to see if there is any truth to the idea that misery is more effective?
People seem to believe the same thing about chemotherapy -- as if the more awful it is, the more effect it has in "killing cancer cells".
After all, those who get the most out of chemothearpy are those who are hormone receptor negative. The hormone receptor positives benefit from its effect on the ovaries, and that is about all they get out of it (other than the misery!)
A.A.
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Sorry for jumping in, but wondering about tamox resistance. i experience very little symptoms. no hotflashes and no weight gain. Maybe mood swings but could just be random and not related. Since tamox is all I have to fight and i was told to skip chemo, i am wondering if I should pursue ovary removal so i can be certain something is being done to stop estrogen in case tamox. does not work for me. no one will offer me the test to see if my body metabolizes the drug tamoxifen which seems absurd to me.
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Charz,
Take a look at the studies done by the Karolinska institute and why they think periodically measuring breast density while on treatment could be helpful, and see what you think, as one way to tell before changing your therapy.
A.A.
P.S. For those who are HR+ and HER2 positive, be aware that between 1/4 and 1/3 have been found to do worse on tamoxifen. (Google AIB1 and tamoxifen and HER2.)
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Tarheelmichelle, a somewhat belated thank you for expressing a very real concern about favoring chemotherapy in low-risk situations.
Consider those who are initially diagnosed as early stage with favorable characteristics, and then do chemotherapy, only to recur for no known reason.
A.A.
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AA, thanks for the tip about the Karolinksa Institute's study. That is fascinating. I'll ask my surgeon about it the next time I see him. My recent mammogram report noted that my breast tissue is "extremely dense," but I'd only been on Tamoxifen for a couple of months. One person suggested that comment might have been part of building a case with my insurance company to pay for an MRI next time, as we plan to do, so I'm not sure if I should take it exactly at face value. But since we have mammograms that can be compared over time and into the future, this is an easy one to track.
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I just looked up the Karolinaksa Inst. Study mentionned above ,.....Very interesting ... Thanks AA
You ladies are ALL great ...I love this thread, its SO informative.
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My onc said that there have been mixed results from studies looking at side effects of tamoxifen relating to efficacy (and that this can be difficult to measure because typical effects are self-reported). He also said that there are mixed results from the studies looking at tamoxifen metabolism correlating with its effectiveness - hence, it is not standard practice to do the metabolism test. And, quite honestly, the results wouldn't really change treatment recommendations for a premenopausal woman in my situation anyways.
Renee, all 3 of my opinions said essentially the same thing as your onc regarding the benefit of chemo in this scenario potentially being from the "chemopause" rather than the cytotoxic effects. However, all 3 also said that this has not been proven yet, though still a commonly held belief for now...
I know that feeling anger over this is futile, but shouldn't we be further ahead in this area?! Breast cancer has been around forever - shouldn't these studies have been done already regarding if the benefit of chemo is the ovarian shutdown or the cytotoxicity?? We can land people on the moon, but women all over the world are still fighting this disease, and all of the emotional aftermath, with so much missing information! I am grateful for recent advances like Oncotype and targeted therapies, but can't help being frustrated by all of the still-unknowns.
Enough of my ranting!
Wishing everyone a blessed day!0
