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Topic: Anyone ER+ PR+ opting out of hormone therapy?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jan 24, 2019 03:27PM

butterfly3 wrote:

Hi, I just had surgery for DCIS last Thursday. Unfortunately, didn't get clear margins, so more is scheduled in a couple of weeks. After that I am agreeing to radiation therapy as all the literature I can find supports that treatment. However, I read such mixed reveiws on hormone therapy. And my gut says putting these meds into my body for five years carries at least as much risk as reward.

I know you can reduce estrogen by losing fat. I'm carrying about 10-15 extra pounds. I'm thinking of modifying my diet and seriously losing weight. I am not highly motivated:)

In any case, I am pretty certain at this point I will not let the oncologist talk me into hormone therapy in addtion to the lumpectomy and radiation. Seems excessive for something they call pre-cancerous. Is anyone else feeling the same way?


Butterfly3

DCIS Right, 1cm, Stage 0, Grade 2, ER+/PR+

Butterfly3
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Jan 24, 2019 04:23PM Polly413 wrote:

Butterfly3 -

You don't say how old you are but I had DCIS at age 55 in 2000. My DCIS was 1mm and I got wide clean margins: that is, for this group of calcifications that were the size of a ballpoint pen tip, the surgeon took out a golf ball sized ball of flesh. The DCIS was too small to be tested for hormones but was probably estrogen positive because I had been on HRT for 10 years when I was diagnosed. I was "offered" radiation and tamoxifen (I was post menopausal but at that time there were no AIs as far as I know). I declined both radiation and tamoxifen and I have had no recurrence locally on that side or mets for 19 years.

That said, I am currently on letrozole for IDC (Stage IIA, Grade 2) in the other side and have been for a year and I have not had bad side effects at all except hair thinning and some joint stiffness. Because I had chemo and am over 70 I declined radiation with my oncologist's support. The IDC was hormone positive. So that is my experience.

I am not encouraging you to forego hormone treatment for your DCIS but I have been okay without it.

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Jan 27, 2019 06:49PM yogamom2 wrote:

Hi butterfly3, We've been on the Jan surgery site together. I'm also hoping to decline/ avoid hormone blocking meds, about 15lbs overweight, 95% both ER/PR + and totally agree with you on overly aggressive tx for pre cancerous cells. I have not had much luck in past moving my tenacious belly but am attending a Unite for Her wellness day, part of which includes a talk from a registered dietitian and the option of scheduling a consult for a treatment plan. https://uniteforher.org/programs/wellness-days-the...

Given the side effects of the meds, I am becoming highly motivated to do whatever it takes to reduce that estrogen producing fat. One good thing is I love exercise. Hiking, biking, kayaking, zumba, yoga, tai chi, if it's movement I love it, sadly exercise alone seems not to deflate my spare tire at all. You can see if your doctor/ hospital is part of that program or if they may have their own version. Wishing your clear margins this time around.

Dx 11/2018, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/8/2019 Lumpectomy: Left
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Jan 28, 2019 07:12AM dtad wrote:

Hi there. I just want to say that I refused aromatase inhibitors from the start. There were many reasons but the main one was that I already had poor QOL due to multiple autoimmune disease. I just wasn't willing to compromise my heath any further. I decided to try to lower my estrogen levels naturally. I lost 30 pounds and try to exercise daily. The combination has been shown to lower recurrence rates by 40 percent. I also take several supplements. I'm not advocating this for anyone but myself. We all have to make our own informed decisions. I've been NED for 4 years now. So far so good. Good luck to all.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 28, 2019 08:46AM butterfly3 wrote:

Thank you for your responses. I'm looking ahead of course, and I'm glad to know I am not alone in my thinking. I have surgery again on the 14th and hope to have clear margins this time. Then I can schedule the radiation. The docs have already mentioned hormone therapy as I'm 98% ER+ PR+. However, I already told them I am not likely to comply with that adjuvant therapy. I think it is amusing how the expectation is that you will just listen and do whatever they tell you. Instead, I am doing a lot of research on the efffacy of this treatment. It seems to vary greatly, have much asssociated controversy, and needs much more study to be deemed conclusively good for everyone.

I plan to keep up my research during radiation. I have access to great medical libraries. Like tdad above, I have found studies suggesting that lowering your body fat and exercising is about the best things you can do. So right now that's my plan. I do like the suggestion from yogamom2 above about getting support for the weigh loss. I know that is not easy!!! You all rock.

Thank you. (PS...Plolly413, I'm 60! My surgery was on my 60th birthday. Heck of a way to mark the occasion:)

Butterfly3
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Jan 28, 2019 07:40PM Salamandra wrote:

Hey butterfly3,

I'm doing hormonal therapy (tamoxifen), but I don't have access to great medical libraries and I'd definitely love to read anything you find that you think is worth sharing!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 30, 2019 06:23PM butterfly3 wrote:

Hi, unfortunately I cannot paste anything into this site. I have downloaded many studies and have to tell you that the decision whether or not to accept hormone therapy is really a personnal one.

On the one hand, studies do show a decrease in the reoccurance of cancer after hormone therapy for ER+ PR+ patients. However, how significant of a decrease is debatable. And your acceptable level of risk is highly personal. Overall, DCIS is NOT well understood as there is no one-size fits all predictor for the % that will progress to invasive cancer. Much of the data is based on pathology itself that has a high level of inter-rated variability. That is one reason why a second opinion is never a bad idea.

Many DCIS cases will never progress to invasive cancer even if no intervention is taken. Statisically, the number of DCIS cases has skyrocketed in the last 20 years, but the mortality rates for breast cancer have not changed much at all. This is easy information to find and verify. Before such great mammography, DCIS was missed.

My personal perspective is that I have DCIS (less than 1.5 cm, grade 2). I am taking the drastic step of having it all removed with clear margins of at least 2 mm. I have a 2nd surgery on the 14th to achieve that. Then, I 'm taking another drastic measure of undergoing raditation therapy on the chance that any cells are left behind. So with those two interventions, I figure I'm reducing my odds of invasive breast cancer to be about the same as every other woman on the planet. I also plan to (and have already begun) seriously improving my eating and losing the 10 extra pounds I'm carrying around to further decrease my estrogen level.

That is good enough for me. The stress of taking 5 years of meds for me would be more detrimental to my health than risking the % of reoccurance. Again, a very personal decision... one that would appal some folks. I know my body, and I know I don't even take Tylenol. The thought of living with side effects for 5 years taking drugs on a small % better chance of not having a reoccurance is not worth it for me. For others, they would be more stressed by taking the risk than taking the drugs. Again, studies do show that hormone therapy is effective for ER+ folks.

I don't know what's truly best. Frankly, I don't believe the medical community at large truly knows what is best for DCIS. We have so much yet to study and learn. In the meantime, I'll make my very personal decision and not let it be made by a doctor who does not know me.

Butterfly3
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Jan 31, 2019 05:45AM yogamom2 wrote:

butterfly3. Very well said. My research since diagnosis mimics yours. Especially that the medical community doesn't yet truly know what is best for DCIS so they tend to over-treat for fear of under-treating.

Each person needs to assess the risk they're most comfortable with, be that risk from deciding against the meds or risk from the side effects of the meds.. I'm gathering info to support my decision to avoid oral meds to discuss when the time comes to meet with MO. While I am more than willing to hear their thoughts, ultimately it is my body, my decision and I will be he one living with the consequences of that decision...not the doctors.

Dx 11/2018, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/8/2019 Lumpectomy: Left
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Jan 31, 2019 08:15AM butterfly3 wrote:

Agree! If you have access to this article I highly recommend it. Basicially one can find stats and studies to support almost any thing you want to believe. However, this article in particular seems to offer a clearly written summary of the current state of affairs with DCIS research and suggests where specifically more research is needed. Until the medical community is better able to predict which DCIS will advance to invasive cancer, they treat DCIS pretty much the same as early invasive cancer.

I wish I could copy it here, but look for "Finding the balance between over- and under- treatment of ductal carcinoma in situ (DCIS)" Emma J. Groen, et al. The Breast Journal www.elsevier.com/brst

Best wishes,

Butterfly3

Butterfly3
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Jan 31, 2019 11:01AM butterfly3 wrote:

Hi, just found another great resource that anyone should be able to access. Please visit the Sloan Kettering Cancer site at mskcc.org and search for "Is low risk DCIS really low risk". Great article from a well respected cancer center.

Butterfly3
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Jan 31, 2019 11:31AM crossh wrote:

Hi Butterfk3, I was 56 when first diagnosed with a small lump (size of pencil eraser), and was started on Arimidex. I was on it for a couple months and it felt like menopause on steroids. I could not stay asleep at night, so I decided to stop taking it. I also didn't like the idea of reducing the small amount of estrogen I was already producing.

My first surgery also had unclear margins, second surgery also had unclear margins, so I switched surgeons and practice, had third surgery finally had clear margins, but no cancer detected. I was left with half a breast and no one could answer why the supposedly unclear margin was not found in the third surgery. This last surgeon actually said that sometimes cancer just goes away by itself. wtf

I was given conflicting opinions on radiation, so I opted out of that as well. 18 months later I went in for reconstructive surgery and ended up having a bilateral mastectomy. There was no way to fix one side without having surgery on the other, so he asked if I ever consider prophylactic BMX. I had not, no one ever mentioned it. But after thinking about it and talking to some family and friends, I figured I might as well just get rid of my breasts and be done will all this constant worrying, surgeries, mammograms, mri's, etc.

It was the best decision I made, wish I did it sooner, I can't believe no one recommended it the time of the third surgery since the last one really was aggressive and destroyed my breast anyway. For me the surgery was not that bad. I was out of work for one week, only had pain the first day, then what I would call discomfort for the next couple weeks. Nothing that ibuprofen couldn't fix.

I am 11 weeks out since BMX, had implants put in 5 weeks ago (prepectoral with dermal flap) and I feel great. New boobs look ok, a little smaller and stiff, but they need time to settle. Apparently it takes 3-6 months. I am going back under in a couple weeks to swap them out for a larger size which is a quick 45 minute procedure. My plastic surgeon also recreates nipples (which I had removed to further reduce my breast cancer re-occurrence) and has a tattoo person on staff for the arealoa. I'll probably have this done in the fall.

Hope this helps, good luck on your journey!

Dx 9/1/2016, DCIS/IDC, Right, 5cm, Stage IA, Grade 1, 0/1 nodes, ER+, HER2+ Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 10/31/2016 Lumpectomy: Right Surgery 5/1/2017 Lumpectomy: Right; Lymph node removal: Right Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 18, 2019 09:26AM dl1129 wrote:

I have not read all the replies, so this may have been mentioned, but an acquaintance of mine was diagnosed about a month before me. She had clear margins after her surgery, and was recommended a short course of radiation (5 days) and a low dose of Tamoxifen (only 5 mg, the standard has been 20). Like you, I have been most freaked out by the prospect of Tamoxifen. Recent research shows that in many cases 5 mg may be just as effective, and avoid most of the side effects, or lessen them tremendously. https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx

Dx 12/31/2018, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Surgery 2/10/2019 Lumpectomy: Left
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Feb 18, 2019 09:57AM butterfly3 wrote:

Thank you for the note dl1129. 

I continue with my research.... I just had a re-excision on Valentine's Day and will get the pathology report on Wednesday this week. If it is clear, I have decided to meet with an oncologist and discuss active surveillance only. It seems that over-treatment of low-risk DCIS is the normal practice.  Since I am  low-risk as defined by less than 1.5 cm, detected on mammography, grade 1 or 2, I feel very comfortable taking the risk of no other treatment at this time. I have already started lifestyle changes to naturally reduce my estrogen level. This includes now walking at least 5 miles/day. I can't work out at the gym for 6 weeks after surgery, so walking it is. Later I'll add weights. 

I am also going off caffeine, reducing my weight, ,and changing to clean make up and beauty products that don't interfere with estrogen levels. 

It seems the problem with DCIS is that doctors really don't know which ones will advance to invasive cancer. However, with biopsy alone, they cannot tell if there will be an upgrade to invasive upon surgical excision. Since I have done the excision, as long as I have clear margins this time with again no sign of invasive cancer, I am very comfortable with active surveillance. If and when they find anything, then I'll take appropriate actions.

Such a personal decision. I only wish that my doctor had talked with me about this initially upon the DCIS diagnosis instead of jumping right to surgery. I would have loved to be in the COMET study. Ah well, I suspect he believes the surgery route is best, and it may indeed be safest. 

Best wished to you on this crazy journey. I hope you find what is best for YOU!

Butterfly3
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Mar 31, 2019 07:09AM Mavericksmom wrote:

I refused treatment with AI (Letrozole) due to the following:

Both times I had breast cancer, my cancers were described as tiny by my doctors. 2003 1cm IDC, 2019 1.3 cm ILC

Both times node negative

I refused first time and had 15 1/2 years cancer free in between

I already have two totally replaced shoulders, if I get joint or bone/muscle pain I can't second guess if it's from the Letrozole.

I watched my mother suffer from Alzheimer's Disease and studies of decrease of estrogen in brain have shown that it increases likelihood and severity of Alzheimer's.

I'm 65 and have had a very full life. I prefer quality of life to quantity.

The doctors at the cancer hospital I went to refused to do a double mastectomy on me saying the won't remove a healthy breast!

I had an Oncotype score of 21 = no chemo and 7% chance of recurrence with AI

I feel doctors are all to eager to push AI's on post menopausal women with, node negative, < 2 cm tumors.

When will they learn that distribution of AI's are NOT a one size fits all treatment? Regardless of what they say, AI's are not harmless in spite of their acceptance of side effects. Benefit should always be weighed against risk and while they are definitely appropriate for most women with breast cancer, more needs to be done to find they are worth the risk in post menopausal women with node negative, grade 1 or 2, <2cm tumors!

You are in charge of your health. As with any major health issue you should listen to what your doctor says, research your condition and apply what you learn to your life, your other health issues and your beliefs. Then make a choice you are comfortable with while taking responsibility for the outcome of your decision.

I am totally comfortable with my choice to refus Aromatase Inhibitors!

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Apr 2, 2019 10:26PM Lake16 wrote:

I'm really happy to find this community and this discussion. I have just completed 3 weeks of radiation post lumpectomy for DCIS, clear margins, grade 2, E/P+. I'm 53 years old and not yet in menopause - still have periods which are growing in intensity each month. Labwork doesn't show any sign of menopause yet. They are recommending estrogen suppression and then femara. As I read all the side effects and consider next steps, I'm really struck by the "caught early, a good form of cancer to have, lucky" and then a monthly injection/infusion for 2 -3 years, along with daily medication. This feels discordant and I get the desired goal to not have a recurrence, but it is so unclear about the risk. I agreed and wilingly did the radiation.

Tamoxofin is off the table because I have uterine fibroids/polyps. What I read is Femara is better for side effects but the Zoladax is not symptom free. The issue that I'm struggling with is the monthly return to get the injection/infusion, and a "double whamy" of menopausal symptoms. I asked, how would you tell if my body was in menopause at some point and thus I wouldn't need the supression. I haven't been given an answer to that. I know this is all individualized, but I'm concerned with putting chemicals into my body beyond what is needed. I also wonder, why not get my ovaries removed. and avoid all this. I like the idea of focused weight loss and exercise. It is so hard to try and weigh the risks, consider what is right for me, my body. I suppose i can start and then reassess. This decision feels much more complicated then radiation.

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Apr 3, 2019 05:02AM Salamandra wrote:

Hi Lake16,

"I'm really struck by the "caught early, a good form of cancer to have, lucky" and then a monthly injection/infusion for 2 -3 years, along with daily medication."

Oh wow, I really feel that! I feel like my head spun so much from all the good things I heard at my first surgical oncology appointment to then all the steps to take after. I came out of that first appointment thinking, okay, this will be a hassle for about 3-4 months, and then I'll be totally fine and back to normal. Like, I don't know, mononucleosis or something.

I think that the surgeons may be realizing that they're dealing with highly stressed and scared patients, and really focusing on the positive. Which is good in the moment, but maybe not so helpful for longer term decision making.

Like, it's all true that I was lucky, it was caught early, and it was a good form of cancer to have. But it's also true that that I now have the risk of distant recurrence hanging over me, basically for the rest of my life.

At first I was pretty resistant to the hormonal treatment and even radiation. But I did a lot of reading and ended up feeling very grateful for these two methods to minimize my risk going forward.

From seeing other threads (I'm on tamoxifen myself), I think the doctors do have a way to check if you're in chemical menopause, but not all of them will use it unless you push them. Definitely check out the threads about OS+AI.

Good luck!!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 3, 2019 08:49PM Lake16 wrote:

Thank you Salamandra,

Your words provide such comfort. I have completed radiation and had no doubts about that. I will look at the other lists that you recommended. There is a disconnect between the front end and the back end that you validated for me. There is the worry of recurrence and I suppose that is why I'm seriously considering the medication but also wondering about having my ovaries removed to just attend to process since I'm almost 54.


I apprecaite it and this community!


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Apr 5, 2019 01:16PM butterfly3 wrote:

HI, It is great to see this conversation. I posed the orignial question becuase I was diagnosed with DCIS 1.5 cm grade 2. STAGE 0 . I really wanted to know what other women are doing. What I realized is my DCIS is NOT cancer, at least in the sense that they found zero invasive cancer cells in the pathology from the lumpectomy. Doctors don't really know, and if asked will tell you, they have no idea which pre-cancers will progress to invasive and which ones won't. So treatment is all about managing risk and that is a very personal choice. Right now the standard of care for women is to treat pre-cancer in the breast with the same aggressive treatment as invasive cancer.

I chose to do the lumpectomy and a 2nd surgery to achieve the desired 2 mm margins (probably unnecessary since they found absolutley nothing the 2nd time around). Still I felt better about being sure it was all gone.

I chose NOT to have any radiaiton. Using research and various risk calculators I made my decision. See https://dcisoptions.org - look under the tab "making decisions". According to the risk calculator, for me there is a 1% benefit over 10 years for my chances of invasive breast cancer if I do endocrirne therapy. There is a 3% risk reduction for having radiation after lumpectomy. For me the 3% is not worth the toxicity of radiation in my body. Again, a very personal decision. That risk is comfortable for me. In my case, my concern about radiation and endocrine therapy far exceeds my view of the potential benefit. But I am doing something. I have modified my diet considerably (Try reading Eat to Beat Disease, now availlabe on amazon). And for the last three months I have barely missed a day of walking a minimum of 5 miles. I walk before work. I walk after work, and when I can I walk at lunch. You can read about much you can reduce your cancer risk by doing GOOD things to your body as opposed to doing toxic things to your body. Again, very personal choice, not suggesting this is a good option for anyone else.

What I most upset about in this process is the approach to my treatment I experienced. I was pretty much told what I woudl do...surgery, radiation, hormone therapy. No one asked me what I wanted. I felt as if was put on a conveyor belt designed for every DCIS patient. What happened to the patient being part of the process?

I said STOP and took control. I don't know what will happen in my future, but I will know it was MY choice, my plan to meet with an oncologist and design a plan for acitive surveillance and my plan for taking better care of myself.

Butterfly3
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Apr 15, 2019 10:35AM Mavericksmom wrote:

I refused AI's but honestly, I'm still scared. I'm 65, had what my surgeon called tiny, 1cm IDC, grade 1, in 2003. Whole fat pad under my arm removed due to a failed sentinel node biopsy. 0/24. I had a lumpectomy followed by a re-excision for clean margins, chemo and radiation but refused Tamoxifen.

15 1/2 years later, I was diagnosed with what was again called “tiny" 1.3 ILC, grade 2 treated with mastectomy. I wanted both breasts removed and was told they wouldn't remove a healthy breast! This was at a major cancer hospital! I had DIEP reconstruction.

I refused AI because:

I already have totally replaced shoulders, if I get muscle or joint pain I don't want my orthopedic surgeon simply dismissing it because of the AI!

I have family history of Alzheimer's Disease and there is a link between low estrogen levels in the brain and earlier/ more severe Alzheimer's.

I have to work another 1-3 years before retiring and my job requires me to be on my feet all the time. I can't risk dealing with added bone/joint pain.

I for one am angry that this is the best researchers can come up with! I feel my doctors speak way too casually about the side effects of AI's and I believe there are not enough studies that show how they rob women of quality of life.

When it comes down to it, cancer never hurt me because it was caught early both times, but I am living with multiple health issues that are a direct result of the breast cancer treatments including lymphedema, mutilated body and wounds that won't heal.

I’m more afraid of treatments than I am of cancer. I had 15 1/2 years cancer free the first time, I am taking my chance that I will die of something else. Still scared, but less scared than I would be taking an AI

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Apr 15, 2019 10:53AM butterfly3 wrote:

Dear Mavericksmom, 

I can really relate to your final comment "I’m more afraid of treatments than I am of cancer. I had 15 1/2 years cancer free the first time, I am taking my chance that I will die of something else. Still scared, but less scared than I would be taking an AI". 

The stress of the drugs for me would be more detrimental to my health than any possible benefits. Here I am trying to eat clean, organic, healthy foods, only put clean products on my body (no parabens, phthalates, etc..) so why would I put toxic meds in my body that offer uncertain value? I don't even take Tylenol - not even after my surgery. So I'm with you. Physicians have spoken to me way too casually about the side effects of treatment. Also, few are trained on what to do FOR your body versus TO your body. It's like saying take diabetes meds, but don't work on diet and weight loss. 

Grr.... too frustrated for words. 

Sorry you are going through this again, but glad to hear you are considering all your options. I'll be cheering for (without judgment) whatever course you choose to take.

Butterfly3


Butterfly3
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Apr 15, 2019 04:24PM Mavericksmom wrote:

Hi Butterfly3, I am right there with you, I too hate taking drugs, but I do take two for blood pressure because I have high blood pressure and Vitamin D because I am Vitamin D deficient. I too prefer healthy foods and exercise over drugs. The AI is taken for a hypothetical reason, but that said, if I had positive nodes, and/or a much larger tumor or a grade 3 tumor I would have taken the AI. It's about applying information to one's self

Nothing in breast cancer treatment is a one size fits all. I really hated how cavalier my doctors were about the AI. My breast surgeon said “I don't think you will need chemo, but you may have to take a little pill daily." My OncotypeDX score showed chemo would not be helpful, but I spent hours researching Letrozole and decided it wouldn’t be good for me.

By the way, I never heard that IDC was not considered cancer, but I have heard that about ILC. I wish you well in your journey! Radiation was not good for me in 2003, I was severely burned. I’m paying the price for that now because I have wounds on my reconstructed breast that aren’t healing because of the damage done by radiation in 2003!

I'm so glad you started this conversation because we all need to remember that we are in charge of our bodies and it is up to us to “own" whatever treatment choices we make.

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May 31, 2019 12:27PM Cmck1973 wrote:

I met with the oncologist today and will meet with the radiation oncologist on Tuesday. All of this therapy scares me. The oncologist said I can choose radiation and hormone therapy or I can refuse it, my choice and they will monitor me for recurrence. Problem is that I can’t decide. On one hand they tell me DCIS is precancer...not cancer...but then tell me I need to take all these extra measures to make sure it doesnt come back as cancer. I don’t know what to do. His biggest concern is my age, I’m 45.

Dx 4/19/2019, DCIS, Right, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/8/2019 Lumpectomy: Right
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May 31, 2019 02:01PM butterfly3 wrote:

Dear CMCK1973., I am very sorry to hear our your diagnosis. All I can advise is do not panic and do not rush. If you have DCIS grade 1, confirm with your doctors - THERE IS NO RUSH. If you are feeling pushed one way and your alarm bells go off, please check with another doctor. This is very slow growing disease, don't take my word for this, ask to confirm. Please do read https://clinicaltrials.gov/ct2/show/NCT02926911 and https://www.dukehealth.org/blog/new-approach-treating-dcis

Please take your time until you feel well informed to make a decision. When first diagnosed you are in fight or flight mode, not logical thinking mode. Breathe, relax and do some research. Going into this feeling in control is the best advise I can offer. I sleep better since I decided to take control of my healthcare instead of blindly following the worse-case scenario treatments that my rational self did not accept, but doctors pushed.

If you take your time, then whatever you decide will feel right to you. NO RUSH!!!!! I can't stress that enough. If doctors push, ask them what's the rush? Ask them the actual growth rate. You will be amazed. You have time to breathe and reflect.

Really look at the active surveillance option too.

Best wishes.

Butterfly3

Butterfly3
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May 31, 2019 02:46PM NicoleRod wrote:

Hi...well I was Stage 0 just like you. INSITU only contained in the duct. I did the lumpectomy and radiation and I did not do the tamoxifen they recommended. My doctors never called Stage 0 PRE CANCEROUS...and personally I do not feel that any doctor should..cancer IS cancer! I will give you another side to think about. I too was like you...I did not want to take any hormones or any meds unless I absolutely needed to. My MO told me when I had the Stage 0 that he agreed with me that there wasn't enough evidence that tamoxifen would make a difference so I didn't take it. BIG MISTAKE!!!!

4 years later it came back same breast not stage 0 Stage 2.and yes I was getting mammograms every 3 months then every 6 months then at my 1st yearly one...it's back.. So I don't mess around I do the double mastectomy thought I was good...nope. Happen to mention about a pain I had when excising in my hip...Stage 4. 3 lesions in liver and 2 in bone.

My husband and I feel that it is not a matter of IF breast cancer will come back...it's a matter of WHEN. Wouldn't you want to give yourself the best fighting chance at not having a recurrence by just taking the Tamoxifen?? Is it 100% full proof that you won't have a recurrence..no of course not NOTHING is, however you are taking every possible step (besides getting a double mastectomy, which if I could go back I would have gotten with my stage 0) to prevent recurrence.

You have to do what you want but take it from me take the steps NOW to try and prevent that. If you know you are hormone receptor positive....then in my opinion take the tamoxifen.

I wish you all the best.

Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/30/2019 Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019
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May 31, 2019 04:17PM butterfly3 wrote:

so very sorry for what you are going through.

However, DCIS is cells that have mutated and have some potential to develop into cancer. They are not cancer. Scientists do not yet know which will develop into cancer, but it is a small %. Treatment is about risk management and it is best to makedecisions not based on anyone person’s experience, but on the collective research. In any case , it is a very personal choice.

Butterfly3
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May 31, 2019 04:58PM NicoleRod wrote:

Well you can believe that theory that they say they are NOT cancer. In any case my doctors all MO, Breast Surgeon, PCM, Hemotologist and Radiologist all called it cancer. Again..if you want to take that risk when you can have a shot at avoiding it then you have to live with that. Good luck.

Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/30/2019 Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019
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May 31, 2019 05:24PM - edited May 31, 2019 05:38PM by Beesie

"Scientists do not yet know which will develop into cancer, but it is a small %."

Actually we don't know that. We don't know what % of DCIS will evolve to become invasive cancer. Yes, studies have looked at this, but the results are all over the map. For high grade DCIS, I've seen estimates as high as 80%-90%, whereas for low grade DCIS, the risk may be as low as 10%-25%.

Over the years I have more and more come to believe that low grade DCIS probably should be considered closer to being a pre-cancer than a cancer - more like ADH. High grade DCIS, on the other hand, can be very close to invasive cancer. In fact the risk that invasive cancer might be found in an area of DCIS is quite high when the DCIS is high grade, or when comedonecrosis is present, or when the area of DCIS is large. Overall, about 20% of DCIS cases (as diagnosed by a core needle biopsy) are upgraded to invasive cancer once the final pathology is in. The percent is much lower for low grade DCIS - probably more like 5% - which means the percent is obviously much higher for high grade DCIS. So in looking at DCIS treatment and risk, it's important that we specify what type of DCIS we are talking about. A single focus of 3mm of grade 1 DCIS is a completely different diagnosis than a 7cm multi-focal grade 3 DCIS with comedonecrosis (what I had; and my large area of DCIS did include a microinvasion of invasive cancer, so my diagnosis was upgraded).

Two other considerations. First, when DCIS recurs locally, as happened with Nicole, in 50% of cases, the recurrence is not found until the cells have evolved to become invasive cancer. Usually the diagnosis remains an early stage invasive cancer, but sometimes it can be more advanced or even Stage IV. That's very rare, but it can happen, as Nicole unfortunately found out.

Second, even if someone is diagnosed with a small, low risk DCIS, by virtue of having had this diagnosis, the risk in the future to develop a new primary breast cancer, in either breast, is now higher. In fact in many cases the risk of a new primary is greater than the risk of recurrence from the first diagnosis. This is something to consider when thinking about treatment. Rads won't reduce this risk, but endocrine therapy will, whether taken immediately at the time of the DCIS diagnosis, or sometime later (breast cancer risk is highest for women in their 60s and 70s).

Some cases of DCIS can be adequately treated with surgery alone. Other cases present a very high risk of invasive cancer without rads (after a lumpectomy) or a MX and endocrine therapy.

Edited to add: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5532880/ See pages 5-7 for some information about the risk of DCIS developing to become invasive cancer.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 31, 2019 05:37PM NicoleRod wrote:

Bee!!!!! Miss you and reading your posts!! ((((hugs)))) and well said.

Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/30/2019 Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019
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May 31, 2019 05:45PM Beesie wrote:

Nicole, thank you!

((((Hugs!))) to you too. I've been following your progress. It sounds like you are in good hands and have a lot going on.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 1, 2019 11:52AM Cmck1973 wrote:

@butterfly, I agree with what you are saying, thank you for your input. My oncologist did say I do not have to decide now, he was very helpful. It helps to not have to pressure myself into a decision but I do want to move on as I’m tired of belaboring this

@nicole, thank you for sharing your experience and I’m so sorry for what you are going through. I guess there’s no way to guess if my situation will be like yours or the others. That’s what’s so scary, I would do the treatments to avoid an outcome like yours but I hate to experience all the side effects if not necessary.

@beesie your posts always bring so much wisdom and I thank you for everything you offer.

I’m still mulling it all over. Hoping I can make a decision soon and move fot

Dx 4/19/2019, DCIS, Right, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/8/2019 Lumpectomy: Right
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Jun 1, 2019 12:28PM NicoleRod wrote:

Side effects vs. Stage 4 ....hrmmm.... you may not even have side effects that are bad. Last but not least...even if you don't take the therapy...do not underestimate the monster inside you...yes BC is a monster and when it decides to rear it's ugly head again...just remember it tends to go to bone and organ on recurrence. Those are facts.

Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/30/2019 Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/29/2019

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