Treatment options scare me more than DCIS
hello! I am 49 and in October I was diagnosed with DCIS in my left breast stage 0 grade 3. Also, I had an MRI on 11/21 which was inconclusive (unbeknownst to me and my doctors I had an infection at the site of the biopsy I had on 10/15!?) but showed that I may have a lesion and something else in my right breast so I am having a biopsy on my right breast Wednesday. I did genetic testing through Myriad on 11/11 but I have no results yet. Back in 2009 I did 23&Me and according to that I had no genetic markers for breast cancer or anything of concern really. I feel like my body is betraying me and I just don’t understand it. However, I want to treat my body with kindness to recover and get strong and not to become old and brittle prematurely. I love working out and walking my 105 lbs dog for miles every day. I am 49 and at some stage of perimenopause. I am overweight surely but I walk miles every day, I run, I lift weights. I also do intermittent fasting since May of 2023. I don’t eat junk food. I don’t add sugar to my drinks, to the food I cook or to my fruit or yoghurt. I cook daily and eat a lot of fresh and cooked vegetables, fresh fruits. I only used EVOO, Avocado oil and Coconut oil. I try to avoid carbs and sweets. I eat fish and seafood, dairy and eggs but no meat. That’s not a diet that I picked up recently. That’s my lifestyle for at least a decade now.
I told the surgeon and the oncologist that I don’t wish to do radiation and I don’t wish to take hormone suppressants. I take a ton of vitamins and supplements but avoid medications. I do take 2.5 mg amlodipine daily for high blood pressure diagnosed April 2024. They don’t seem to be too happy about my decision, although they said they would respect my choices. They asked me to consider full mastectomy if I don’t wish to do radiation and or hormone suppression and I don’t see a reason to do that, yet. I have read up on reconstructive surgeries and that seems to be a nightmare to me. I don’t think I can stay still and not use my arms. I don’t want to undergo several procedures. I think if mastectomy is in the cards I would forgo reconstructive surgery. I guess I would hope that if the muscle is spared it wouldn’t be so horrible looking.
I think that since I am going to have mammograms and even MRIs frequently for the foreseeable future, I might as well have the surgery (lumpectomy) and then just monitor the situation. If it recurs, then I might consider going with a more radical approach.
How disfiguring is a lumpectomy?
I am very concerned with side effects and having doctors tell me that to overcome one side effect I need to take another pill and then another. I don’t want to have brittle bones, I don’t want to feel fatigued and tired unless I have put real time and effort at the gym or at work.
I don’t want to have people minimizing risks of side effects because as a rule when medications have side effects, I experience them, so I try to avoid them.
oh, and I wonder if the lumpectomy can be done without general anesthesia. I want to be awake. I think it will give me more peace of mind and lessen side effects of general anesthesia. Has anyone done that?
Anyway, that’s me Skeptical.
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Hi @skeptic17 and welcome to Breastcancer.org.
We're so very sorry for the reasons that bring you here, but we're glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
You may find reading through the DCIS forum helpful. In addition, our page on Treating DCIS might give you some insight.
We hope you find some helpful experiences here. Let us know if there's anything else we can do to help. Keep us posted on your decision and how you make out!
—The Mods
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I am sorry to hear about your diagnosis. Your concerns are understandable. I can’t answer all of your questions but here are a few things to consider:
- Glad you’ve had genetic testing beyond 23&me. That being said, only a minority of bc cases are linked to known genetic mutations (15-20%). It is a smaller risk factor than most imagine.
- You lifestyle/diet has been excellent and although that can decrease one’s chances of developing a serious illness, it is not reliably preventative. My sister was Ms. Clean lifestyle before that was even a thing. She still developed cancer and passed away. Lifestyle/diet is not some sort of immunization against breast cancer (or many other diseases).
- It’s not uncommon for those who have lead clean lifestyles to feel betrayed to some extent (my sister really did) but that lifestyle was never a guarantee of a disease free existence. I think that sometimes people feel as if it should be but the reality is that it’s not. Anyone who believes that it is needs to understand that .
- Lumpectomies are not all the same. Depending on the affected area and size, the “disfigurement “ will vary. The anesthesia question is something to discuss with your doctor. Recon can be complicated but remember that most who post here are posting because they have some sort of an issue. Most don’t!
- No one wants to do surgery, rads , drugs etc.! However most of us weigh the side effects of tx vs recurrence, particularly metastatic recurrence. Although some models exist to help you understand your recurrence risks, none come with a guarantee.
- I don’t know if most of us minimize the side effects. We are a pretty honest bunch. Most of us who experience side effects find ways to cope with them because the possibility of recurrence is a lot more daunting than dealing with side effects.
- Although about 70% of those who receive early stage conventional treatment will not recur,30% will. This does vary by stage, but bc has no cure, just an absence of recurrence. Of course, those with pure DCIS who use conventional tx are the least likely to recur but it does happen. There are almost no stats on those who refuse conventional tx because very few do and they are not followed by an oncologist.
Ultimately, we are all free to make our own choices about treatment. Doctors use research based evidence to determine tx plans. Alternative tx is not part of their toolbox, in most cases, and has little science based research to back it up but plenty of anecdotes. I am glad that they respect your choices but most practitioners of conventional medicine support scientific based research. Have you looked into integrative medicine? Some who are not comfortable with conventional medicine find that integrative medical doctors are willing to work with some alternative practices.
The bottom line is this; if you choose alternative treatments or turn down recommended conventional tx and then have a recurrence will you feel bad or upset ? If the answer is no, then you can confidently make choices that are best for you. We have had a few members turn down conventional tx. Some did well, some didn’t, and most stop posting so their fate is not known. By far, bco members use conventional tx (with complementary medicine for general care and comfort) over alternatives . I don’t have any recommendations but I think there must be groups that offer stronger encouragement and support for alternative tx than here. You are very welcome here but there isn’t the same level of depth regarding alternative tx as there may be on forums geared toward such tx. The choice is always yours! Take care.
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Skeptic17: DCIS scared the shit out of me so perhaps it’s wrong for me to even reply to you. To be honest, I had no reassurance that I had purely DCIS until post mastectomy. So I had plenty of time to worry about worst case scenarios. And then when I received the good news that it was purely DCIS, I was then told that I had a positive margin. You still need to wait until you have the full picture of your diagnosis.
Exbrnxgrl has given you a very thorough analysis of things to consider. I can’t even begin to match that. I will briefly speak from my experience and heart.
DCIS is both a best case scenario and a deception that you will be cancer free from now on. There are arguments that DCiS is over treated and personal case examples of endeared BCO members that went on to develop stage four breast cancer. Odds are overwhelming that you will survive this diagnosis, but no guarantee of avoiding a recurrence, particularly with grade 3. So you can take this opportunity to take every measure or at least a few measures to reduce the odds of recurrence and thank your lucky stars for this break or avoid any chance of treatment side effects and disfigurement and hope for the best. Only you have to live with the consequences of your decision. I chose options that I knew I could live with. I knew what I feared most. Everyone’s experiences are individual and unique. And I need to add that women with mastectomies do not look horrible. They often look alive and active. Whatever you decide, I hope you have the best possible outcome!!
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Just caught that comment on mastectomy and muscle removal.. That type of procedure, a radical mastectomy, is rarely performed, in the US and I imagine most other countries, and hasn’t been for at least 20+ years. There would have to be atypical circumstances for a modern mastectomy to involve muscle removal. I have been a bco member for 13+ years and have seen only one person who had a modified radical mastectomy. A simple mastectomy is the prevalent procedure.
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Hi @skeptic17, There is a breast surgery available called oncoplastic lumpectomy. I had one for a 3.2 cm tumor which had excellent cosmetic results with no scar visible three years later. Not all breast surgeons are trained in this method which involves internal flaps using the breast tissue but you can look for a surgeon who does this. As far as local vs. general anesthesia goes it depends on the location of the DCIS. Again you need to find a willing surgeon. You may have to choose between that and the cosmetic outcome, however.
Mastectomy with or without reconstruction is the recommendation if you want to skip radiation and hormone blockers for all the reasons enumerated by exbrnxgrl. That decision is up to you, however. All of us here would have chosen not to have breast cancer if that were possible but now the reality is choosing the treatment that you would regret least if you had a recurrence. All the best.
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