DCIS - No surgery?

Oktogo9, that's great news!  Hoping for lots more mammos and ultrasound with 'no change' for you!  And I hope you keep updating us with the good news.

Have they kept you on annual screenings or will there be a check at 6 months?

Hi, I've been reading your posts and have been having the same thoughts you are about treatment vs no treatment. Tell me how are you doing, I was just diagnosed but there is so much controversy. Thanks.

Debbie, I can only tell what I did. I did have the lumpectomy in 2012 though the mammogram in September 2011 did show a suspicious area. That was the end of my treatment after the second opinion by Dr. Michel Lagious. How much treatment you have depends on size, your age, positive or negative hormone receptors and stage and the opinion of you and your doctors. No one can tell you what you must do. However, you have to get this right because your life depends on it. I'm no expert but I believe you should a lumpectomy with big margins at least. You take a step at a time and get educated on it

Thanks infobabe. My Dr. said that I had too wide of an area to do a lumpectomy unless I wanted a really deformed looking breast and is recommending a mastectomy. She is not supportive of me being closely watched. I'm with Kaiser. I'm going for a 2nd opinion on Monday. It all is so confusing to me.

Oktogo9: You haven't been here in a while and you probably already know this by now, but the only person I know of who is publicly watching and waiting runs the website dcis411, her name is Donna. Have you contacted her? She seems very open to that. There is also DCIS redefined, which has a good FB page. I wish there were a clear protocol for active surveillance. There isn't. The LORIS trial in the UK is the first real step in that direction. There was some good discussion without judgement on DCIS treatment in another thread on the Esserman article a while back.

I am most interested in this topic, and hope enough people still visit that I will get a reply. Here's my story: A suspicious mammogram led to a suspicious ultrasound which led to a biopsy on Jan. 4 of this year. Biopsy showed infiltrating well differentiated ductal carcinoma, histological low grade (tubules) 1. Nuclear pleomorphism 2) Mitosis 1; total score 4. Grade 1. Microscopic focus of ductal carcinoma in situ present. An addendum stated: Invasive mammary carcinoma, no special type, low combined histologic grade, low proliferative rate, multiple cores, focal low grade cribriform ductal ductal carcinoma in situ. Strongly positive for estrogen receptor (100%) and moderately positive (2+) for progesterone receptor. HER2 gene and FISH study is negative.

I had breast-sparing lumpectomy with Sentinel node removal on Feb. 2. The surgeon said he got it all, the margins were clear, and no node involvement. My radiologist had said that if somebody had to have cancer, this was the one to have. Great! All over and done, right? Yesterday I visited the oncologist who recommended Arimidex and radiology. I have a horrible history of a genetic blood disorder, and have had open-heart with 5 bypasses, carotid endarterectomy, 4 iliac stents so I could walk, plus two more heart attacks and stents. This all happened between 2009 and 2013 - no problems in going on four years now. I do NOT want to take the Arimidex and I do NOT want radiation anywhere near my heart, lungs, or ribs. My plan is to cut out all high-estrogen foods, take the DIM supplement, get check-ups every six months and yearly MRI.

My heart and spirit know what I need to do. But my brain keeps whispering that "doctors are always right" when I know for a fact this is not true. Since the oncology visit I cry a lot and my blood pressure has gone up. I feel sick to my stomach 24/7. I desperately need feedback with those who have been through this who know a lot more than I do. I would especially LOVE to hear from some of the women on this board who did not take the medicine or radiation. It worries me that they don't post any more. Are they still alive? The stress of this is making me sick which can't help matters. Thank you for listening. P/S I'm confused by some calling DCIS noninvasive, when my biopsy report said invasive.

Elle, from your biopsy pathology report. it sounds to me as though you have both DCIS and invasive cancer. "Infiltrating ductal carcinoma" and "invasive mammary carcinoma" are IDC, not DCIS. It is very common for both IDC and DCIS to be found together, and when this happens, the staging and treatment is based on the invasive cancer. Has anyone told you that your final and complete diagnosis is Stage 0 DCIS?

Noni, I'm confused by a couple of things you've said. First, because DCIS is a localized disease (confined to the breast) whereas chemo is a systemic (through the whole body) treatment, chemo has never been part of the treatment protocol for DCIS. So if your diagnosis was Stage 0 DCIS, with no invasive cancer also found, it seems odd that the option of chemo would even have been discussed with you. That would certainly be contrary to treatment protocols, even back in 2007 (I was diagnosed in 2005 so I am familiar with the protocols of that era). Second, while a MX often (but not always) allows a patient to pass on radiation, a MX (or (BMX) is never a substitute for chemo. A MX/BMX is a localized treatment addressing the cancer in the breast area, while chemo is a systemic treatment addressing the risk that some rogue cancer cells may have moved to other places in the body. Chemo and a BMX address completely different risks. Because of this, if someone with invasive cancer is deemed to require chemo, then chemo will be recommended whether they have a lumpectomy, a single mastectomy or a bilateral mastectomy. So it's really confusing to me that you were offered the choice of removing your breasts or having chemo and rads. Am I missing something more about your diagnosis?

Thank you Beesie! No one has told me Stage 0 DCIS. All I have is what I copied here from the path report, but I will be calling my breast surgeon Monday! The MO was very clear that chemo is not required.

P/S My daughter and her husband are beekeepers with hundreds of thousands of bees. They do it as a side hobby, and it's fascinating stuff.

Hi Elle1250:

I am not sure if you have finalized your decisions or if you are still open to considering treatment. In the latter case, I note the following.

It appears that you were diagnosed with IDC. With IDC, treatment decisions should be based on a personalized risk/benefit analysis, and your personal risk tolerance.

Informed decisions should be based on case-specific medical advice from a medical professional with the appropriate expertise. This should include estimates of your recurrence risk(s) and by how much various treatments may reduce these risks in your case. (Write them down. Ask the doctor to read and confirm accuracy.)

The risks of severe adverse events, in light of your age and presentation (e.g., co-morbidities), are also important considerations.

Your team should provide an explanation of the relevant recurrence risk(s) for you with: no further treatment at all; with endocrine therapy alone; with radiation therapy alone; or with radiation plus endocrine therapy.

Your diagnosis and risk profile are not clear from the above:

You provided some information above about the results of biopsy, plus some verbal communication about lymph node status and "clear" surgical margins (not size). These should be confirmed against the written surgical pathology report.

If you have not already done so, be sure to obtain a copy of the surgical pathology report (and any related tests) for your review and records.

Your actual final diagnosis is based on the combined results of the pathology from all biopsies and surgeries.

The surgical pathology report should include more information about tumor histology (ductal, lobular, mixed, other), lymph node status, actual tumor size, and grade. Surgical samples are often retested for ER and PR status, and sometimes for HER2 status. Any of these results might differ in some way from biopsy findings.

The pathology report also includes the size of the surgical margins, which can influence local recurrence risk. It may also include reference to "lymphovascular invasion."

Radiation in your case with IDC:

The primary benefit of radiation therapy is to reduce the risk of loco-regional recurrence.

If your Medical Oncologist ("MO") recommends that you consider radiation, then please seek a referral to a Radiation Oncologist ("RO") if you have not already done so.

The RO can provide you with information about your local recurrence risk without radiation, the potential risk reduction benefit(s) of any proposed radiation regimen(s), and the potential risks of such regimen(s).

You can inquire whether a shorter or more limited regimen is a reasonable option for you, or if not, why not.

Select patients (for example, those with node-negative, ER-positive, invasive tumors ≤ 20 mm (2 cm) in greatest dimension) who are age 70 or older may wish to inquire if they are a suitable candidate for a treatment plan that includes 5-years of an aromatase inhibitor without breast irradiation, and if so, the risk/benefit of this plan versus other options.

With such information and advice from a professional with the relevant expertise, you will be better positioned to make an informed decision about what is right for you, whatever you decide.

Systemic Treatment with Endocrine therapy (e.g., an aromatase inhibitor such as Arimidex):

Even with node-negative disease, before surgery some invasive breast cancer cells could have already traveled via the bloodstream or lymph channels to distant sites in bone, lung, liver or other tissue, laying the foundation for distant metastatic "recurrence".

One of the key benefits of endocrine therapy for invasive breast cancer is reducing the risk of such distant metastatic recurrence.

Re: "The MO made me feel like if I didn't do what he wanted, I would die of bone cancer, which he said there is no cure for."

I think the MO was trying to impress upon you the nature of the risk and his view that treatment would be of benefit in your case. The MO is correct that recurrent metastatic breast cancer is incurable. What he was saying is, that if you declined Arimidex, you would be incurring a greater risk of suffering an incurable distant metastatic recurrence (e.g., to bone, lungs, liver, etcetera), than if you elected Arimidex treatment.

He is talking about recurrent metastatic breast cancer, so he is talking about breast cancer cells growing in the bone, lungs, and/or liver, etcetera (as opposed to bone, lung or liver cancer).

He is correct that the nature of the risk is severe (incurable disease that may shorten lifespan).

The question is what is the SIZE of this risk in your case, with or without Arimidex? If you don't have this information, please request another appointment with your current MO and/or seek a second opinion from another MO.

Note that Arimidex can also reduce the risks of local in-breast recurrence and of new contralateral disease.

By the way, did you receive an OncotypeDX test? Perhaps the tumor was very small, so the test was not indicated?

Best,

BarredOwl

hi. I've not posted for a while. I had my first clear mammogram a couple of months ago and for the firstt time i feel able to let go and move on. I check in most days, however, and your post resonated with me. our diagnoses and responses to surgery are similar. I just wanted to let you know I've been taking tamoxifen for about 9 months. The only side effects

I have are some very tolerable hot flushes. I have started running (very slowly) and i feel great. I tried aromatose inhibitors and found them intolerable but tamoxifen is grand, for me at least. I feel very lucky to have had it as an option. Don't be sad and think everything from here is downhill: that is just not the case. Some of last year i found very hard but i really do feel healthy and lucky. You say you are an active person....fantastic! Stay active and keep living your life.

I'm post menopause as well and it was no problem switching me to tamoxifen. I think ais are more effective but tamoxifen is nearly as good. I would be inclined to try for a couple of months or so and see how you get on. Thanks for your good wishes! Not much time for celebration here as we farm and are in the middle of lambing at the minute. I spent yesterday graping out pens and carrying buckets of water. I'll find time to raise a glass sooner or later!