Anyone ER+ PR+ opting out of hormone therapy?
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Nicole, the young woman you are referring to did have a MX for the DCIS. She had widespread DCIS and it's most likely she had an invasive component in her original cancer that was never found by the pathologist. Missed invasions happen, particularly when the patient has a MX and there is a whole lot of breast tissue that has to be very thoroughly examined. Usually nothing bad comes of it, but there are those very rare and unfortunate, and supremely unlucky, cases.
There is nothing wrong with having a lumpectomy for DCIS - if the size of the DCIS allows for it. But to get recurrence risk down, clear /adequate surgical margins (minimum 2mm) are a must. And if the margins are adequate but narrow, rads is a must. Without that, the recurrence risk mightbe quite high, and 50% of DCIS recurrences are not found until the cells have already developed to become invasive cancer.
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Wow, it's been over a month since I've been here, but a busy month. I liked the very well trained and experienced BS at Legacy Good Sam and she will be doing my lumpectomy and coordinating everything else. She and I looked at the Sloan Kettering page together and I decided the couple of percentage points difference in recurrence rate isn't worth it to me. BS concurred. The reason I haven't already had the procedure done is that I was preparing for the major oral surgery I mentioned in a previous post, which finally happened yesterday. The BS at the dedicated BC center said there was time, and I had agreed that I would contact her after I was released from the OS.
As much as I liked the BS, I find her nurse pretty abrupt. She called today, sounded like she didn't give a crap, told me she had scheduled me for 8/16 and refused to note the heavy duty antibiotics I'm on, and will just have finished by then.
Here's the nurse's plan: report at 9am, marker placed at 11; surgery around 1pm. I told her that
I will inform her if the date is agreeable to my OS after I have my post-op with him on Thursday. She had not recall my discussing the biopsy from hell with BS or that she would see I got something to get me through reliving that nightmare. If that's not in my chart or she didn't bother to look, we have a problem. I'm going to discuss my concerns honestly with the nurse navigator, since I would hate to have to change BS because of Nurse Debbie.Reading about cmck1973's experience, I'm really glad that the BS selects the RO she wants to work with and I feel sure she'll let me know if there are differences of opinions. She already told me that she makes sure there's a CT with a left breast. The BS so hands-on that she called me herself after she had her path guy review the report from my biopsy.
We have to advocate for ourselves, don't we? And I always think when I have to be very assertive that I may be also advocating on behalf of other women who accept "doctor's orders" blindly.
Suzanne
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Sorry to ask, what is OS? Couldn’t find it. Thanks
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Thanks all for sharing your experience, knowledge, and opinions here. I am still learning and it's so helpful.
Is the original poster still here....? My diagnosis is DCIS ER+ PR+ and I will not be taking tamoxifen. That is my choice. Some of my doctors agree, some do not. I am currently doing radiation, despite fears for my lungs and heart.
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Hi, I wrote the original post. I was diagnosed with low grade ER+ PR+ DCIS. I did surgery twice to get clear margins. However, I opted out of both hormone and radiation therapy. The risk calculator I used (Duke's) and the many hours spent doing research suggest to me that the risk of both remedies comes close to the risk of reoccurrence for me. (Be sure to understand relative risk vs. absolute risk). Therefore, I'm on active monitoring. I'll keep up with mammograms, have changed my diet, lost weight, walk at least 5 miles per day. I get frustrated when anyone says I'm not doing anything. I'm taking a healthcare approach vs. a disease care approach. For me it is best, but certainly would not be the case for everyone. I am comfortable with my decision and much less stressed. If you have a chance, look up the LORDS study from the UK and the COMET study here in the US where DUKE is a major player.
DCIS is pre-cancer and some doctors are lobbying to have the word "carcinoma" removed from the description. The cells have deviated, but are not invasive. The trouble is they don't know who has hidden invasive cells and who does not. They don't know who will have reoccurence and who will not. Therefore, they treat everyone as if she has invasive cancer to be on the safe side. I respect that, and some doctors actually respect if you don't agree with their go-for-the-most-aggressive-treatment approach. As I have said many times, it is a very personal choice and none of us should attack others for whatever road we choose to follow. All I know for sure is this is MY body and I get to decide. Just taking control improved my life.
Best wishes for great outcomes.
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Hi Butterfly3 thanks so much for your response. I completely respect your choices!
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The way it was explained to me is that during the surgery (with clear margins) all the DCIS cells are removed. However, what they cannot guarantee is that some rouge cells have not traveled elsewhere in the ducts that can become invasive. There are no guarantees of anything. Just like there are no guarantees that radiation will come without costly side-effects, or hormore therapy won't deteriorate your quality of life. That's why the choice is so personal I think. You have to know the risks based on scientific evidence, but the decisions cannot be made in isolation of knowing the actual person those breasts are attached to. We are not talking about treating disease, we are talking about treating people. This person has read the studies and concluded that the absolute risk (not relative risk) is worth me taking an active surveillance approach. This is right for me - the person attached to that breast that had low-grade DCIS cells that may or may not have amounted to anything in the future.
A doctor asked me once about taking out a simple cyst...Will leaving it in keep you up at night? My answer was NO, so I left it there. It has since disappeared.
I think whatever decision you make should be the one that won't keep you up at night.
I'm sleeping fine:)
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Interesting I never heard that some cells could travel . Last year I was diagnosed with Dcis (incapsulated non invasive cancer) it s rare type of Dcis ,sitting in capsule . They didn’t put grade , I have few reviews of blocks after surgery MX , and it was valued as grade 3 , I think because of necrosis. Size 15 mm , no multi focus .
One doctor said aromidex another 3 nothing I skip hormones and thinks by about prophylactic.I am thinking m I right or not to avoid hormones I thought that cells can’t travel in the body
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Elena, DCIS is confined to the ducts, so as the cells multiply, they tend to spread out within the duct. As a result, sometimes areas of DCIS can be quite large - I had over 7cm of DCIS, not a solid mass but small lines spreading out through the ductal system of the breast. And the DCIS might 'skip' as it spreads through the duct - a line of DCIS, then a space of 1mm or 2mm, and then the DCIS continues.
Because invasive cancer has the capability to grow within the open breast tissue, as IDC cells multiply, the cancer tends to grow into a solid mass that gets larger and larger. Therefore it's rare to find IDC that is as spread out as DCIS can sometimes be. This is why having good surgical margins is actually more important for DCIS than IDC - and this is reflected in treatment guidelines.
While DCIS can spread in the duct, it cannot survive outside of the duct and does not spread into the body. However, DCIS cells, if left in the breast, might continue to evolve and eventually develop into an invasive cancer. This is a change that takes place at the molecular level of the cells. Once this change has taken place, the cells have the ability to break through the duct, survive in open breast tissue, and spread into the body. But at this point, the DCIS has become IDC and the cells are invasive cancer cells
More explanations about DCIS here: https://community.breastcancer.org/forum/68/topics/790992
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Thank you for such wonderful information. I was diagnosed a few weeks ago with DCIS left breast after having stereotactic biopsy as well as a few mammograms. I met with my surgeon on Tuesday and she indicated that the pathology report from the biopsy showed DCIS with microinvasion. Surgery has been scheduled for October 30th though I'm seeking a second opinion. I do wonder if I do get clear margins would hormone therapy and / or radiation be absolutely necessary? I have Hashimoto's disease and messing with hormones will flare the annoying autoimmune disease. Anyone have thoughts / suggestions / opinions? Thanks and hope you all have a decent day!
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Beesie I love reading your posts. My BS referred to DCIS as "squirrelly"--can't really see it or feel it. I've always thought that's why so many lumpectomies require re-excision. It makes more sense now that it's not necessarily one contained mass but a bunch of arms through the ducts. I've always learned so much from you!!
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I am feeling pressure to take Tamoxifen. I had DCIS, 1mm, ER Positive, Grade 3, Stage 0. Lumpectomy surgery on January 6, 2020. I finished my 20 rounds of radiation therapy March 11. I had genetic testing BRCA1/2 and all came back negative. I am a healthy 70 year old following a lower Estrogen Level diet - Cancer preventative diet. I have always exercised regularly. Today my oncologist let me know I was not following Standard Care by rejecting the Tamoxifen. He said my cancer has a 3% chance of reoccurring and the Tamoxifen with lower that to 1.5%.
Is there anyone else out there who elected NOT to take Tamoxifen? What happened?
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MyBestFriends, I will copy here some parts of my response to your earlier post with the same question:
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Rather than answer your question, I'll put some questions to you:
- Did your oncologist review with you the side effects of Tamoxifen?
- Given your age (the risk of some of the more serious side effects tends to be higher in those who are older), how does your MO feel the risk of side effects balances against the 1.5% recurrence risk reduction that you would get from Tamoxifen?
- Did your MO only discuss Tamoxifen or did he also offer up the option to take an Aromatase Inhibitor? AIs are usually prescribed to post-menopausal women rather than Tamoxifen but perhaps there is a reason why Tamoxifen would be better for you.
- And for you, how worried are you about an extra 1.5% recurrence risk, if you were not to take Tamoxifen?
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The reason I asked you those questions is because everyone's situation is different. Everyone's risk level from their diagnosis is different. Everyone's risk of severe side effects from Tamoxifen is different. So whether someone else decided to skip Tamoxifen and what happened to them does not reflect what might happen to you or what the right decision is for you. It's always helpful to know what other people did, but you need to be aware of the differences. In your case, you are quite a bit older than the average patient, and your area of DCIS, at 1mm (how did they find anything so tiny?) is significantly smaller than that of the average patient.
I will go a further than my first post and add that if you were seeing my MO, I can guarantee that he would not recommend that you take Tamoxifen, assuming the 3% risk you mentioned is accurate. For the average woman, the risk of serious side effects from Tamoxifen - stroke, DVT, endometrial cancer, etc. - is approx. 1%-3%. For someone who is 70, the risk is more likely to be on the high side of those numbers, and possibly even higher. If your risk of a recurrence is only 3%, this means that the risk reduction benefit you'd get from Tamoxifen is only 1.5%. One half of this risk, 0.75%, is a recurrence that is still DCIS, an easily treated condition. The other 0.75% of the risk reduction is for an invasive cancer recurrence, which is really the only thing that someone with DCIS needs to worry about. So by my simple math - again assuming that your 3% recurrence risk is accurate - from an overall health standpoint you put yourself at greater health risk by taking Tamoxifen (1%-3% risk of serious side effects) than by not taking it (0.75% risk of a recurrence that is invasive breast).
That is the discussion you need to have with your oncologist to decide if you should be taking Tamoxifen.
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