Just diagnosed with DCIS and struggling with the decisions

Trichick1964

Hi all,

I was just diagnosed with DCIS, Grade 1, ER/PR pending. Saw the oncologist who recommended 5 weeks of radiation and clear margins. margins are barely clear now and I'll see the surgeon next week for post op and hear his opinion about going back in and really making sure the margins are clear. I'm struggling with all the what ifs. I'm no different than everyone else her in DCIS land. It's a blessed place to be because the treatment is so successful, and it's a hard place to be as well.

I wonder this...if I had several small clusters of microcalcs and only 1 of them was biopsied which showed DCIS, what about the rest of them? What are they harboring? More ADH? More DCIS, a tiny cell of ICD? And then there's the other breast and I have the same questions there. All I know that in this one spot that was boipsed, there was DCIS. So part of me says, take em both and be done with it. I know it's not that simple and it's a huge surgery with reconstruction. I have a strong family history, dense breasts, lots of scar tissue from earlier breast reduction. Does all this warrant a prophylactic mastectomy? But then "just" radiation seems so easy by comparison. I know I can always have a Mastectomy done at a later time, but I can't undo one that's already done. I also know that radiated skin may not take to reconstruction very well if it's necessary down the road. So do I take the conservative route and possible compromise future treatment if needed?
And then I emailed with my cousin tonight who has had BRCA testing (along with another cousin) and her geneticist believes they (which means me too) have a mutant gene that's undiscoverable. Both my cousins had their ovaries removed this year. My cousin will have tons of family history info to throw into the mix. I was tested today for BRCA. My grandma and all 3 sisters had either breast or ovarian cancer. An aunt had ovarian, my other aunt (mom's sister) had early BC (diagnosd at 33, died at 50) and now I have DCIS. It's a fairly compelling family history. If BRCA comes back positive then it's a no brainer for me but I'm banking on a negative response and then being faced with the decision to remove my breasts or not. It's kind of a potential damed if you do, damed if you don't way to live.

I'm just spouting off and venting. I know no one can tell me what to do, but i sure appreciate the support and tales that are shared over here.

,

Annette47

((HUGS)) and welcome to the club no one wants to join.

As you say, no one can tell you what to do, and honestly in your situation with that family history I don’t know what I would do either. I do have one suggestion though - can you ask your surgeon or whoever is in charge of your case about the other micro calcifications - why they weren’t biopsied and is there reason to be suspicious or not. They may have characteristics that were very different from the area that they did biopsy, but you deserve to understand what was done and why ... that information might help along the way. The good news is with Grade 1 DCIS, you have plenty of time to figure things out.

Trichick1964

Hi Annette47,

I've asked the question about the other microcalcs twice now and I will continue to ask . The first time I asked it was when I had the ADH diagnosis and at my surgery consult appointment. My surgeon is good from a skills perspective, but I'm about 100% positive he has Aspbergers and stringing together words combined with some sense of personal connection is limited. I left my first appointment pretty uneasy, but did ask around and heard he's a good surgeon and everyone agrees about the personality thing. I was happy with him for the biopsy. So, I doubt I'm going to feel any more satisfied with my questions being answered upon my post op this Wednesday. I am currently waiting for a call from a different surgeon's office for a new consultation. Moving forward, I need a surgeon who I feel some sense of connection because this is an emotionally driven roller coaster ride. I also asked the oncologist about the other microcalcs and he said "the radiologists know what they are looking for and when to determine further investigation" Well yah, I know that, but that didn't answer my question. I have ADH per stereotactic biopsy and what prompted the further excision, and with this biopsy sample it showed DCIS, focal atypical lobular hyperplasia, Proliferative fibrocystic change, and a fibroadenoma. That's a whole lot of benign breast disease going on in one small sample, all of which "can" increase my risk of breast cancer.

Moving forward, I will wait for another surgery consult and I still have to meet with the RO. And you never know, perhaps my current surgeon will surprise me with his level of communication this week now that we know what we are looking at. I'm not holding my breath. I live with Aspbergers in my home, I know the limitations . Of course, a BRCA positive result will end my deliberation. And you're right, I have the luxury of time (thank goodness) although from a $ perspective, I'd sure like to get done in 2015 so I don't have to start over again with insurance out of pocket expenses. I'm at my max for this year so everything moving forward is free (in a round about sort of way).

And thank you for your response ... much appreciated!

Annette47

Good luck!

I understand the wanting to get it all done in 2015 ... I was diagnosed in November, had surgery in December (and my daughter had to have surgery for a broken hand in October) so we had maxed out the deductible for that year, but I couldn’t do radiation until January so again, maxed out the deductible for two years in a row - and we have a high deductible plan!

Italychick

trichick1964 can you ask for an MRI? I think it identifies areas of concern. It did a pretty good job in my case. Sounds like you might not have enough information from them yet since there were three areas of concern and you only know about one of them. What testing have they done on you

Trichick1964

Hi Italychick,

I asked the oncologist about an MRI and he said it's not indicated in this case because it's small, low grade, etc. I don't know that I agree with that assessment but I took the info at face value for the moment.

My first mammogram report:

The breast tissue is heterogeneously dense, which could obscure detection
of small masses.
There are multiple small clusters of microcalcifications which have
developed compared to the prior study the most conspicuous of these is a
cluster of 10-20 microcalcifications in the inner deep central right breast
6 to 7 cm behind the nipple at the 3:00 position. There is no architectural
distortion, skin thickening or mass.

My recall spot mammogram report:

Spot magnification views of the right breast in the central inner aspect in
the CC and 90 degree mediolateral projections were obtained to evaluate a
cluster of microcalcifications seen on the recent right mammogram of
6/25/15. Deep in the right breast is a cluster of microcalcifications,
exhibiting mild pleomorphic features. The 90 degree view shows additional
scattered microcalcifications some of which exhibit menisci such as from
layering. There is no mass.

Unless I'm reading this wrong, it appears as though there are more than 1 cluster of microcalcs. In fact, I know this to be true because I could see them myself and when they did the stereotactic biopsy, the radiology tech specifically said, "Oh, there are 2 clusters near each other, let me ask the radiologist which one he wants me to get."

As I read the biopsy report again, there is no mention of ADH which is what the original biopsy report stated, so where did it go? And the marker was not in the biopsy sample, so where did THAT go?

Other tests include a pending ER/PR status. I don't know that they did HER2 testing or not.

Interestingly, our family history consists of 4 sisters (my grandma and her sisters) all of whom eventually got breast and/or ovarian cancer, one of whom was young. In the next generation line, my aunt was diagnosed with BC at 34/died at 40 and another cousin died of ovarian. Now in my generational line, I'm the first diagnosis. And of course, we are of Ashkenazi Jewish heritage. It turns out my 2 other cousins (both my age) have had genetic testing, BRCA negative but a geneticist feels strongly there is a genetic mutation going on that is perhaps not identified yet. Both of those cousins had prophylactic hysterectomies recently. Apparently there is more history and information that I didn't know about and this information will help me greatly in determining how I go forward. I'll be chatting with my cousin tonight to learn more about the research she's been doing and how she came to her decision. It's all interesting from an outsider's standpoint but since I'm in the middle of it, it's also extremely overwhelming.

The big question is...do I get on my bike and try to ride tomorrow or do I hide out from the heat one more day?

ChicagoReader

Trichick, sounds like you're asking the right questions and doing the right things. Once you've completed your initial round of appointments, have you thought about getting a second opinion? It might help you make some tough decisions.

Until I was diagnosed, I didn't realize that second opinions come in different flavors -- for example, a patient can get a second opinion on pathology, which involves sending the slides but doesn't require the patient to see the pathologist. Or the patient can get a second opinion on treatment, which usually (but not always) requires a visit.

Many insurance plans will pay for a second opinion. I got one on the pathology from my biopsy, and it was covered.

Trichick1964

ChicagoReader...Good idea! I hadn't thought about getting a 2nd opinion on pathology. I may want to do that after I see my surgeon Wednesday and hopefully get some of my questions answered. Thank you for the suggestion.

Do you mind me asking how you did with your radiation treatment? That may very well be the next step.

Italychick

trichick, I thought an MRI was especially valuable when a woman has dense breasts. Hopefully others will chime in. I think I would push back on the MRI.

They probably didn't do a HER test because I think I read somewhere that almost all DCIS is HER positive. Here is one link, hopefully it works.

http://www.dslrf.org/breastcancer/content.asp?CATI...

I rode today around 9:30, was pretty nice along the coast.

ChicagoReader

Trichick, I'm happy to answer your question about my radiation experience. First of all, I was a reluctant radiation patient. I was leaning against it before surgery. After surgery, I learned that I had DCIS in two quadrants, and I got more info about my estimated recurrence rate. I decided that the risk was too high for me personally to feel comfortable skipping radiation. It's a very personal decision, however, and will depend on factors unique to each individual's situation.

As for the radiation itself, I experienced more fatigue than I expected and some inflammation of the chest and shoulder muscles, which I didn't expect at all. Most of my skin was not too bad, but the underboob didn't do well -- I had a sizable area that was very sore, red, and oozing.

It's now been a little over 3 weeks since I finished radiation, and my skin is almost completely healed. Although it wasn't pleasant, I would make the same decision if I had to do it again.

Trichick1964

Thanks for sharing your experience ChicagoRead. It helps so much to hear from others who have already walked the path. Certainly we all make decisions that work for our own cases and personalities and lives and we all respond differently, but somehow hearing stories helps create some sort of picture for me. I don't know if that makes sense or not.

I'm sorry you struggled a bit through radiation. If only we could predict and properly prepare, huh?! I'm glad you're almost all healed now. That's wonderful news.

Interestingly, I talked to an aunt by marriage in a weird round about way, and although I knew she had breast cancer a few years back, I found out tonight that she also had DCIS, Stage 0, grade 1. We talked for 2 hours about all sorts of things, partly about her experience with radiation. She's one of those who did quite well. If I had to venture a guess, I'd say the fatigue will get me as I have chronic fatigue syndrome as it is, so any extra strain on my body zaps me. I'll just have to plan for it and if it doesn't happen I'll consider it a happy bonus .

queenmomcat

Trichick: glad you had that talk with your aunt! The BCO boards are wonderful, but a face-to-face chat with a real live person helped me as well.

As for side effects of radiation, I'd say 'remember that people tend to post when they have a problem or a question. Those who progress swimmingly, or have all their doubts explained...don't." This tends to skew the apparent results. But definitely bring up the chronic fatigue syndrome with your oncologists. I'd bet the radiation SE fatigue would be a particular problem for you; I didn't get blindsided because I just figured that if the doctors bother to tell you about something, chances are it's going to be miserable.

Well, and I'm on the Canadian protocol--fifteen rads sessions, and three boosts.

lmnSeattle

Multiple clusters - how do you know you're OK?

Trichick - I completely relate to your comment "if I had several small clusters of microcalcs and only 1 of them was biopsied which showed DCIS, what about the rest of them? What are they harboring? More ADH? More DCIS, a tiny cell of ICD?"

I'm new to the journey following mammo ID of multiple groupings of calcification, and one stereotactic biopsy that found ADH in first samples taken. Surgeon wants two more stereotacic biopsies done, to learn about some of the other clusters, so we get a better idea of how much tissue might need to be removed. But what if the next biopsies don't happen to catch a cancer cell that's there or ADH that's there or.....on and on. My doctor said there is just no way to know for sure until tissue is removed and assessed. He did say he wants to avoid having 8 or 9 biopsies of my breast to test every area, and hopes the next biopsies will give him a better idea of the best treatment option. Personally, if the next samples show ADH or something more, I'd rather remove everything and reconstruct. Why sit around an wait for cancer to show where it's likely?

That leads me to wondering how you are doing, since your September 2015 posts. What treatment paths have you taken? I would really like to get your input, if you might have time to share.

The doc also wants me on Tamoxifen right away due to me being very high risk, but I've been successfully on anti-depressants for many many years to deal with depression that runs in our family, and the only anti-depressant that does not contradict Tamoxifen is one I've tried that didn't help me. Ugh.