After Lumpectomy - Decision to have NO Adjuvant Treatment
Hi everyone, new member here.
On 7 August this year, I was diagnosed with a 3 cm Stage 2 Invasive Ductal Carcinoma, ER + PR + HER2 -, in my left breast. On 15 September I underwent a sentinel node biopsy and lumpectomy. The cancer was removed with small but clear margins, no node involvement and no vascular involvement. My wounds are healing well, and the feeling is coming back around the sentinel node scar and underneath my arm. I have no evidence of lymphedema.
It was subsequently recommended that I undergo a three month course of chemotherapy, and a six week course of radiation therapy, as well as 5 years of Tamoxifen.
After many weeks of research and quite a few long dark nights of the soul, I have now come to the decision to not undertake any further treatment for my breast cancer. I have realised that my fear of the possible side effects of the treatment outweighs my fear of a recurrence of my breast cancer. As I have no node or vascular involvement, it is highly unlikely my cancer spread to anywhere else. Therefore, the risks of chemotherapy (chemo brain, cardiac and other toxicities) far outweigh the benefits in my opinion, and studies have indicated that chemo is basically ineffective against solid tumours like breast cancer. Radiation could be more beneficial, however again I weighed the risks (left breast cancer, so more exposure of my heart to radiation, burns, permanent changes to breast tissue and appearance, possible future sarcomas and lung cancer) and again decided against it. Tamoxifen has a minor benefit in my opinion (saved the lives of less than 1% more women over 15 years compared to those who did not take it) and i'm not prepared to put up with the side effects and risk of uterine cancer and blood clots. My doctors are not impressed - some in fact have been downright rude about my decision.
A word of warning when researching papers - doctors and researchers often speak in terms of relative percentages, not absolute percentages, and this can skew findings into making treatments appear more effective than they really are.
I find it disturbing how primitive the treatment for breast cancer still is, all that money! and still treatment is invasive and dangerous. I find it very interesting and disturbing how generic the treatment is - it seems that just about everyone gets the same dose of chemotherapy drugs and Tamoxifen, and the same radiation protocol. What's with that??
I now intend to have an MRI every 12 months to monitor my breasts, and if I should have a recurrence I will have a double mastectomy. I am also taking aspirin and metformin - please check the link below regarding the possible efficacy of these two drugs in saving lives of people with breast cancer. I intend to lose weight which will help lower my estrogen levels ( I have PCOS) and also eat better and exercise more. I feel my body has a better chance to get healthy without having to heal itself from the cancer treatments as well as from the cancer itself.
I'm not an alternative medicine nut - I just can't see how exposing your body to such dangerous and invasive treatments could be good for you in the long term. The odds are on my side that I won't have a recurrence. Even if I underwent all those treatments, I could still have a recurrence. Even if my cancer does recur in the future, at least I will have had some years of good health prior to it happening. I won't have been suffering from side effects of hormonal treatments, or from damage from the radiation.
Every person's breast cancer journey is different, and everyone must do what is best for them.
Is there anyone else out there who has done the same as me? I would love to hear from you.
Comments
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bigmc,
I understand how you feel and I agree. Our treatment for cancer may be a huge improvement over the past but it is still primitive and barbaric. Your link is fascinating.
I turned down chemo because of the side effects and I often wonder if the side effects of radiation and arimidex were worth it. That said, if I were stage IV, I would try absolutely everything the doctors recommended and research PubMed for other things as well.
I take aspiring and turmeric every day. (check them out on PubMed).
You have made your decision based on the best information available to you. I was told that I had a high risk of recurrence but turned down chemo based on the best information available to me. I had a couple of scares in the first years and sort of second guessed myself. While waiting for the biopsy results, I realized I didn't regret my decision. I am now seven years out.
Best wishes for a long and healthy life.
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bigmc--
While unlike you, I did have radiation following my lumpectomy, like you I declined hormonal intervention because of its potential to affect my long-term health (stroke, clots). Can't tell about your age, but I was 71 at diagnosis, and refused to trade a possible future tumor that can be seen, felt, identified as it is growing for an invisible fatal condition that is undetectable while developing. Besides, at my age, my greatest sources of estrogen are fat, sugars, and starches--all of which I can reduce and keep under control with due diligence. Have managed to lose 15 lbs since dx too, and my BMI is well below 25 now. Since I always went to the gym (3x/week, 90 mins each day) for resistance, abs, and cardio work, I have maintained that schedule--as well as lots of walking. I also make sure to get unprotected sun (at least 3x/wk, 15 mins each time), but never at peak hours,to keep my vitamin D levels up naturally (my dermatologist approves, by the way).
As for radiation, I knew that cancer cells can be latent for a while after they have invaded healthy tissue and that their latency helps them evade the even the best surgeon's scalpel; so radiation seemed to me a viable, beneficial safeguard even for stage 1, grade 1. But, that said, my tumor was on the right, not left, side. I did do research about the prone vs.supine position for radiation--ended up having it on the right in the usual supine position, though. You might look into having radiation done face down, which some rad oncs do when the left breast is involved, if the individual patient's particular anatomy makes the position work.
I did meet with some skepticism from my rad onc and the med onc at first. But to the med onc's credit, she ordered the Oncotype test to see what that data says about my prognosis (I ended up seeing her only once, since she agreed that with my Onco# my odds wouldn' be significantly improved anyway). But my PCP and surgeon were supportive of my choice, and the surgeon is stepping in for all of my follow-up care. And my PCP lamented that too often many of his colleagues are oblivious to the law of unintended consequences when prescribing drugs! Don't know what to suggest about your adamant medical team except perhaps to change doctors for your follow-up care!
Bottom line, I feel great, as great as before dx and am even better than before dx, says my PCP. Had my two-year post-surgical mammogram this week and everything is fine, so so far this is proving to be the best choice for me. And as so many have noted, the treatment choices we make have to be based on US, not just on NCI or oncologists' guidelines. TG
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I'm right there with you, Bigmc, about declining adjuvant therapy; in fact, i've done just that twice after considerable thought and rumination. Rather than retell my sad BC saga yet again, i'll just refer you to the small print below for the details of what i went through in 2013. Anyway, after the BMX i was rx'd Arimidex and the side effects were so severe after about 3 weeks on it that i just stopped taking it and soon felt more like my old self. Of course there was that stubborn, fear-based inner voice that was beating me up night and day about that decision, but here's the cold data i used to support it.
First, i went to CancerMath (http://www.lifemath.net/cancer/breastcancer/), the NHS' Predict tool (http://www.predict.nhs.uk/) and AdjuvantOnline (you're only supposed to access this if you're a medical professional so i granted myself an MD for the occasion) and learned that by taking hormonal therapy, i might live between 28 and 81 days longer than if i didn't. All those side effects and diminished quality of life didn't seem worth it for a possible additional one to three months. Second, i reasoned that Mother Nature gave our bodies three--count 'em three--ways to manufacture estrogen, so it must be a vital hormone and not one to suppress through aromatase inhibition without risking significant consequences somewhere down the road. And third, from an actuarial perspective and considering my personal and family medical histories, i am far more likely to die of a cardiovascular incident than from cancer.
After having made the decision to stop the Arimidex, i had a routine appointment with my GP, herself a BC veteran, who encouraged me to 'at least try' tamoxifen because it 'could help,' and anyway, she was taking it and had no side effects. Okay. I'll try. Well, that lasted for a couple of months before the fatigue, insomnia, hot flashes, depressed mood, aches and pains, etc., led me to discontinue tamoxifen as well, and firm my resolve to eschew any adjuvant treatment.
i do not visit BCO much anymore and just happened to stop here this morning while waiting for the dryer to finish its load and saw your post; a pesky cardiac arrhythmia issue is commanding far more of my time and attention lately, and it is something i'm more inclined to treat aggressively than the BC thing. You're right, we all have to make these decisions for ourselves with the best information we have and i wanted to let you know that you're not alone (although i wonder it gals like us have either dropped out of BCO or didn't join in the first place). All the best to you!
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i am so pleased to meet fellow chemo refusers! I need to check out that cancermath again as it did not give me option of taking AIs or nit, a few days mire life, even if three months is not worth my two years misery on them
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I'm still weighing my options. Chemo is out, a low oncotype score of 11, so the oncologist and I aren't even discussing that (chemo) anymore. Just had a lumpectomy on Thursday, so I'm awaiting pathology results, clean margins, hopefully no nodes involved, etc. Leaning toward radiation (at 51 I definitely don't want a local recurrence) but still not even sure about that, and although the oncologist originally recommended tamoxifen I'm not inclined to accept it at this point. My breast cancer is tubular in nature per the stereoscopic biopsy and as such low grade. I can't see that tamoxifen would be of much benefit and it certainly is not a benign drug without major side effects. I will be discussing removing my ovaries as an alternative type of therapy (very high ER+ status), they are on their way out anyway and removal at my age will just hurry along mother nature's plans for me and it may put an end to my monthly migraines (gyno has long said they may stop when I go thru menopause so I'm hoping).
Strangely enough, in March (6 months prior to breast cancer dx) I decided I needed to change my diet/lifestyle. Switched to a Paleo diet, lost 20 lbs, so I've already made some pretty significant changes in that dept. and I think that may be enough to me. Plan to exercise more, continue to eat Paleo (no sugar, processed foods, dairy, gluten) and keep a close watch on vitamin d levels (found to be very low a year ago, now fine thanks to supplements).
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Thank you all for your replies! it is very nice to know I'm not alone. I was very interested in seeing if anyone has regretted their decision not to undertake recommended treatment, and it appears that everyone is satisfied with their decisions, which is very comforting to me.
Ananda8 - I've started taking aspirin and I've been reading about turmeric lately, and have just copied a recipe for golden milk. I'm so pleased you are doing well 7 years out. I really don't know what my decision would have been if for example I had positive nodes, or stage IV, as you mentioned. A whole different ball game then. Best wishes for the future.
tgtg- thank you for sharing your story - I did speak to my rad onc about having the radiation done in the face down position to minimise heart involvement, however he said that it was not an option in my case as I have quite large breasts (which he also said suffer more side effects from radiation than small ones). He offered to do the breath hold technique, which apparently pulls the heart away from the radiation beam. No such protection for my lungs though sadly - I'm an ex smoker, and when I pushed him he admitted that my chances of lung cancer as a result of the radiation and my ex smoker status were considerable. No thanks. I would rather have a breast cancer recurrence than lung cancer. I know exactly what you mean about facing a tumour that can be seen and identified rather than a silent disease. I wanted to say exactly that in my post but didn't quite know how to do it. So pleased you have had such great results and all the best.
Bluetail - you have certainly had a tough time. I know what you mean about that little inner voice that starts up when you're trying to sleep - how do you know you're doing the right thing - will you regret this big time down the line - nothing about this whole journey is easy is it. I have wondered too about the effects of blocking estrogen by way of the drugs - every action has a reaction and I imagine there is a price to pay for the estrogen deprivation. It affects so much more than just our breasts. All the best with your heart issues and thank you for the support!
Lilly55 - so sorry to hear of your bad experiences with the meds. I hope things have improved for you.
Labelle - fingers crossed for good path results for you. Is the Paleo diet easy to maintain? I am vegetarian for animal welfare reasons, and am considering undertaking a raw vegan diet, but that is hard work! I can understand you wanting to remove your ovaries however I would imagine the sudden plunge into full menopause would be very hard...good luck with everything.
I notice that a couple of you have mentioned vitamin D levels - I don't know anything about this, are low levels relevant to breast cancer recurrence in any way?
My GP was scathing about my refusal to undertake chemo - needless to say i'm on the hunt for a new one who actually supports his /her patients. The oncologist was ok at my last interview with her, admitting that chemo was not likely to be of much benefit to me. She did try to persuade me to take Tamoxifen though. The rad onc was quite sure I would undertake the radiation and had already booked me in. He was not happy with my decision either and refused to answer my subsequent emails. Oh well.
I know there are approved protocols for cancer treatment and doctors must comply with these protocols. I wonder how often they are reviewed?
Thanks again everyone.
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levels of vitaminas n D3 do seem to be relevant to bc.......i take D3, have you had your levels tested?
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I too am certain vitamin D levels and thyroid function (they frequently go hand in hand so if you have thyroid issues you should be extra sure to keep tabs on your vitamin D leverls) are relevant in breast cancer treatment/causes/prevention. One only has to look at the rate of occurrence of breast cancer in northern climates v southern (lack of exposure to sunlight). The well CDC has a great map showing bc rates in all states-northern states are all higher than southern states. The map is quite striking.
I don't find a Paleo diet especially hard to follow, but I have always liked to cook from scratch. Convenience foods are out. But it is high in animal protein (all pastured organic meats are a big part of this). I can't imagine a Paleo diet in any form as being vegetarian friendly, although many of the side dishes I prepare are vegan type recipes. However, if you don't eat meat for animal welfare reasons, organic meats are much more animal friendly; cows, pigs, chicken, lamb and goats are not lot fed but allowed to free range in organic farms situations, not crammed into unsanitary and crowded conditions, etc. as are most in normal modern commercial meat production "farms" today. IMO it is a much more humane (and healthy) way to raise animals for human consumption.
I don't think ovarian removal will be a huge shock to my system, as I am already perimenopausal, with my periods being irregular. I had hot flashes all of August and Sept, didn't have my period for 3 months, but it's back this month. If I were younger and not perimenopausal anyway I probably would not consider ovarian removal a good plan and if I were a bit older and thru menopause it wouldn't matter, but from what I understand about menopause, it is not a linear progression of your ovaries gradually slowing down, but involves estrogen production flaring up and down. With a very ER+ breast cancer, I don't think I want them in there kicking and screaming, fueling the fire so to speak, just hope I can get my oncologist to agree so my insurance will pay for it.
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bigmc--
Here's a link from BCO that talks specifically about vitamin D and breast cancer:
http://www.breastcancer.org/risk/factors/low_vit_d
I also read in several medical journals about research showing that vit D seems to be almost as effective as tamoxifen, which is an appealing idea to me. I for one prefer to get vit D the old-fashioned way, from sunlight and foods, rather than by filling my body with artificially made chemical substitutes. My PCP ordered a blood test for vit D levels, and found that I am able to continue to maintain a high enough level on my own in this way.
For safety's sake, I saw a dermatologist for a skin cancer check after about a year of measured, unprotected exposure at "off-peak" hours, and she was all in favor of getting vit D this way. In fact, she said she even recommends some controlled sun exposure to patients who've been treated for skin cancers, including melanoma!
My rad onc said just the opposite about the prone position for really big breasted women, by the way. She told me that I am way too small (a D cup!) for her to use it on me! She said she only uses it for really huge-breasted Amazon women! So much for agreement in the medical profession! These polar opposites are interesting, but your man's opinion no longer matters to you since you ditched him anyway. And anyway, if I had your lung issues, I would have declined rads too, I feel sure. Good luck to you. TG
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bigmc,
Thank you SO much for being so open about refusing these horrible treatments. I'll be in the same position soon, as I just had my lumpectomy on Friday, and will have to make these serious decisions quite soon. I was already told after my biopsy that I'm unlikely to need chemo, but just 16 radiation treatments. Although radiation 'seems' less invasive and sickening than chemo, I'm not totally happy with the prospect. As for tamoxifen, I've read enough about that to scare me witless. I want none of it, and am prepared to tell the oncologist so, when the time comes!
Could you provide me with any links you found helpful with regard to absolute, rather than relative percentages? Figures like, say 50% reduction in recurrence sound impressive until you read that that 50% may refer to something as small as 4% versus 2%, for example!
Good luck with your continuing recovery, and hopefully, you'll do very well!
C.
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If your D3 levels have not been checked I would certainly ask for that. There's good evidence regarding breast cancer and really, no down side to keeping D3 levels up. The 3rd surgeon I saw was the only one to pick up on my low levels of D3, re-tested, and asked me to increase dosages immediately.
There is also fairly good of evidence that a combination of D3, magnesium and calcium citrate is protective for colon cancer, per my G.I., and that same combination helps strengthen bones.
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Well done, ananda8. Hope you remain healthy!
C.
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caralex, Thank you.
I do my best to eat heathy but I really need to exercise more. I hated being on Arimidex but I almost stuck it out for the full 5 years. I quit a couple of months early due to the pain. It was wonderful to have that pain disappear. My hair has stopped falling out. I am reversing the osteoporosis caused by Arimidex. I take 4000 IU of vitaminD3, 1200 mg calcium, and 400 mg magnesium. This seems to be working.
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Thanks again for all replies.
Lilly55 and Labelle - I've never had my Vit D levels checked - however I do live in the Southern Hemisphere, so I get plenty of sunlight. I wasn't aware of the link between Vit D and thyroid dysfunction or breast cancer. I'm sure I have an underactive thyroid - always cold, crave salt, slow metabolism, metabolic syndrome, and both my sister and niece have had their thyroids removed due to cancer. I actually went to my GP to get a request for a blood test to check it when I asked him quite off hand to have a look at a lump in my breast which hadn't resolved with my period as usual, and the rest is history....once I find another GP I will definitely get my thyroid and vitamin D levels checked.
tgtg - Isn't that strange about what your rad onc stated about suitability for prone radiation - my rad onc told me only skinny women with quite pendulous breasts are suitable for that, I strike out on both counts there. You'd think there would be agreement on something like that though, wouldn't you...the medical profession causes me considerable concern at times...thank you for the link about breast cancer and Vit D.
Hopeful8201 - During this whole breast cancer episode, I've never had a doctor mention Vitamin D levels to me at all...I did get a blood screen done before surgery, do they check Vit D in that? otherwise they would have no idea what my levels were.
Caralex - it's a very difficult decision to make about what adjuvant treatment, if any, you want to agree to - i saw a psychologist a couple of times just to be able to vent it all to someone neutral. I was haunted for a while about what ifs, and am i being selfish and stupid, but my instincts, deep down inside, tell me I have made the right decision, for me. I felt a great weight lift off my shoulders once I had decided. I can't imagine undergoing all those terribly invasive treatments, suffering the side effects then spending the next 10 years wondering what nasty surprise might pop up as a result, on top of worrying about a recurrence. Best of luck to you and as your surgery was only recent you have a little time to consider your options. You will come to a decision, whether for or against, and will know it's right for you. Good luck xx. This link is to an article about Tamoxifen and it puts published research results into a bit more perspective. I will try to find some others for you. http://www.opposingviews.com/i/health/conditions/cancer/tamoxifen-what-difference-does-it-really-make
Did anyone time their surgery for minimum amount of circulating estrogen? I put mine off twice so I could get it done at the best time of my cycle. My surgeon said there was no proof it made any difference but was happy to indulge me...
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Thanks, bigmc, for that reply, and the link. It's one I had already read, and been impressed by. If you can find anything on the effectiveness of radiation, I'd be grateful if you could send it along.
I hope you continue to do well, and will never regret your decision.
C.
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Bigmc - It's really unlikely that a pre-surgical workup would check D3 levels unless your surgeon requested it. The test isn't particularly expensive and you don't need to fast or do any other preparation. It's just a regular blood draw.
Some MDs are really on top of this issue and others aren't, so don't be surprised if someone downplays the importance. I think the fact that 3 MDs in 3 different specialties have raised this issue to me supports the importance of addressing it.
If you want to do something on your own, you can always take 1000 units a day on your own, unless it's RX where you live. Then, once you have a new GP you can ask to test your levels and see what more you need to do. Good luck - I'm looking for a new GP, too, and it's a much bigger task than it should be!
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In regards to Vitamin D, let me say, that I live in Florida, the Sunshine State, and I get out everyday, walking the dog, gardening, etc. And my vitamin D levels were still low. Definitely worth getting it checked out. They do have to order it specifically, it would not be done as part of any preop blood work. And there seems to be a link between low vitamin D levels and colon cancer.http://www.cancer.gov/cancertopics/factsheet/prevention/vitamin-D
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I have read that 50 ng/ml is an ideal level for Vitamin D3. Some doctors will request the test be done in nmol/L. I used to have a conversion table but I can't find it anymore.
I take 4000 IU of D3 per day. My levels are 47-50. I also take 1200 mg of Calcium and 400 mg of magnesium to reverse my osteoporosis that I developed while on Arimidex. I am showing some improvement.
bigmc, if I had the information on Tamoxifin that you provided in your link. I would have taken Arimidex for two years only and perhaps avoided many of the side effects. I suspected when I started that 5 years was just something the pharmaceutical companies made up based on maximum profit margin.
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