DCIS first follow up since surgery in September.

Posted by flowergal @flowergal, May 22 8:38pm

Diagnosed with DCIS stage 0, grade 3. No lymph node involvement, lumpectomy, 5 weeks radiation. Very dense breasts. Had two consults both said lumpectomy, radiation, Anastrozole.

Yesterday had follow up diagnostic mammogram. I knew something was up as they kept calling me back for more scans.

They found "fatty Necrosis" under the lumpectomy scar.
That breast always hurts especially when I work out.

The other breast- now they see three areas of calcifications that they believe are benign, but they can change. This was not what I expected.

Another mammogram in six months and MRI.

I'm now second guessing myself as to whether I should have had a DMX instead of lumpectomy because of the breast density. I am having major anxiety regarding having to be "worried" all the time that my breasts are cooking up cancer.

Not sure how to process or prepare myself for the next exam. I hate knowing these calcifications are now in my other breast.

Anyone else go through this uncertainty?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@sam44

What is DMX ? I just got diagnosis of DCIS today so just beginning to do research.

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@sam44
Welcome world of acronyms. Breast cancer has it own set.
DMX – double mastectomy
SMX – single mastectomy

Here are couple sites that have lists:
https://www.breastcancer.org/community/abbreviations
https://www.komen.org/wp-content/uploads/Common-BC-Acronyms-FINAL-02-07-13.pdf

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@freckle1

I had DCIS 16 years ago, and opted for mastectomy rather than lumpectomy. No need for anything else. I toyed with the idea of preventative mastectomy on the other side but unfortunately didn't go through with it. Cancer came back with a vengeance two years ago. Grade 3 - aggressive. Chemo, radio and now AI. And I have permanent peripheral neuropathy. I really really wish I'd rid myself of that remaining dense breast while I had the chance!

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@freckle1 you have neuropathy from your second mastectomy? Could you explain about this, as I had a single sided mastectomy close to 5 years ago and all this time have pain in my rib cage (Serratus Anterior muscle) and shoulder blade. How was your neuropathy diagnosed? Dr just tell me probably nerves didn’t reconnect. I have acupuncture treatments and things have improved greatly but it’s still there. TIA & Blessings. These are all tough decisions.

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@sequoia

@freckle1 you have neuropathy from your second mastectomy? Could you explain about this, as I had a single sided mastectomy close to 5 years ago and all this time have pain in my rib cage (Serratus Anterior muscle) and shoulder blade. How was your neuropathy diagnosed? Dr just tell me probably nerves didn’t reconnect. I have acupuncture treatments and things have improved greatly but it’s still there. TIA & Blessings. These are all tough decisions.

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@sequoia I think I’d look further into what could be done about your pain. Here’s a very good article about what sounds similar to your situation:

https://www.uofmhealth.org/conditions-treatments/surgery/chronic-pain-after-mastectomy-and-chest-surgery#:~:text=Nerve%20Injury%20Contributes%20to%20Post%2DMastectomy%20Pain&text=These%20nerve%20injuries%20can%20lead,%2Dcontinuity%2C%20and%20scar%20compression.

“Once nerve injury is identified as the source for the pain, surgical removal of the small, offending nerves can be performed in a straightforward outpatient operation. Small incisions on the flank (directly under the armpit) or just to the side of the breastbone or the spine are used to gain access to small nerves that come out to the skin from between the ribs. The damaged nerves are excised, with the anticipation of resolution of the pain. The side effect is numbness in the area. Most patients welcome this numbness as a welcome trade-off.”

If the surgeon says that insurance won’t pay for this - I’d suggest that you request that the surgeon provide the insurance company with a statement that outlines WHY you need the surgery. Number one issue the insurance might pay - is to keep you off opioids or even high levels of nsaids in the future. Although you might not be taking these now, I believe there is a high percentage of people who do and as you get older you may want the pain relief. The other issue insurance co might pay is that it is restricting your ability to exercise in ways that are healthy (core muscle exercises probably cause you pain?). If these, or other issues, are affecting your life and health you should discuss it with the doctor and, at least, get it in your records. Having a record of actual functioning and pain may help you in the future if you decide not to do anything now, but who knows what the future may bring?

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@sequoia

@freckle1 you have neuropathy from your second mastectomy? Could you explain about this, as I had a single sided mastectomy close to 5 years ago and all this time have pain in my rib cage (Serratus Anterior muscle) and shoulder blade. How was your neuropathy diagnosed? Dr just tell me probably nerves didn’t reconnect. I have acupuncture treatments and things have improved greatly but it’s still there. TIA & Blessings. These are all tough decisions.

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Nothing to do with mastectomy. Everything to do with chemo. I was tempted to stop the chemo because of growing numbness in my hands and feet, but Covid was rampant at the time and I was keen to get out of there. I have tried acupuncture but it doesn't help.

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I, too, had "fatty necrosis" after my 1/27/2022 lumpectomy on the right side. I had not been given an oncotype (because my Illinois doctor is a narcissistic jerk), even though I had asked since December of 2021 when the 11 mm. 1A 95% estrogen positive tumor was found. On the one-year anniversary of surgery I took myself to a HerScan ultra sound place (traveling van) and paid $300 out of pocket for the ultra sound, which I soundly flunked. That led me to my Austin (Tx) doctor, who spent an inordinate amount of time with me, vowed to get me the oncotype I should have had at the outset, and sent me for a diagnostic 3D mammogram. The "lumps" that showed up with the HerScan were attributed to normal healing (fatty necrosis) , but not until I was being asked to have my 3rd stereotactic biopsy. I begged off, as it took 6 months to heal last time. I knew (from #2) that they could also gather all of my routine mammograms and compare them to see if there had been any change, I opted for that. There had been no changes, but it did reveal calcification in both breasts. (It was calcification that led to my first stereotactic biopsy in 2018, which was extremely painful and yielded no cancer but benign calcification that, 3 years later, turned into the tumor on the right.) I have always wondered if the painful biopsy that was very deep against my rib cage and very difficult to get to heal started the tumor that ultimately was discovered during a routine mammogram on 12/7/2021.

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@flowergal

Thank you this is very helpful advice. Now I have to get the MRI and see what's next.

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I so agree with you about the MRI for dense breasts…don’t know why exactly it’s not the first choice for dense breasts in this country, other countries go straight to MRI. Now I also have seen that MRI misses some lesions and that in many cases both (imo) evaluations are needed for dense breasts. I have been told that it’s the insurers who won’t go along with it. But I believe it is probably more than that and that the research has not caught up with the actual need.
Also regarding calcifications in the other breast research shows that it’s pretty rare in the contralateral breast. I had that scare this past January while in for my annual mammogram but biopsy was negative.
So good luck will be thinking about you , good vibes your way.

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@jlgc

I so agree with you about the MRI for dense breasts…don’t know why exactly it’s not the first choice for dense breasts in this country, other countries go straight to MRI. Now I also have seen that MRI misses some lesions and that in many cases both (imo) evaluations are needed for dense breasts. I have been told that it’s the insurers who won’t go along with it. But I believe it is probably more than that and that the research has not caught up with the actual need.
Also regarding calcifications in the other breast research shows that it’s pretty rare in the contralateral breast. I had that scare this past January while in for my annual mammogram but biopsy was negative.
So good luck will be thinking about you , good vibes your way.

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@jlgc

You're asking some same questions I have asked oncologist about.

I asked if going to do a MRI (which I insisted on) then why do mammograms. He said they each have their own purpose and combination is best. I am 5 years out from treatment and now alternate every 6 months between MRI and Mammograms.

At a presentation by one of Mayo's Breast Clinic oncologist, I asked about MRI vs Molecular breast imaging and she recommends MRI for dense breast.

I am sure some of the guidelines will vary based on individuals.

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@jlgc

I so agree with you about the MRI for dense breasts…don’t know why exactly it’s not the first choice for dense breasts in this country, other countries go straight to MRI. Now I also have seen that MRI misses some lesions and that in many cases both (imo) evaluations are needed for dense breasts. I have been told that it’s the insurers who won’t go along with it. But I believe it is probably more than that and that the research has not caught up with the actual need.
Also regarding calcifications in the other breast research shows that it’s pretty rare in the contralateral breast. I had that scare this past January while in for my annual mammogram but biopsy was negative.
So good luck will be thinking about you , good vibes your way.

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You said in the last sentence that your biopsy was negative. What exactly did you mean and what did you do? What is DCIS or not. So they thought it was but the biopsy said it wasn’t?

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Correct… they saw a “suspicious” ductal calcification on mammogram on the contralateral breast. It was pretty large (12mm) and a bi rad 3-4. It was biopsied and found to be negative for cancer. So yes it was in the duct but NOT cancer so not DCIS.(Ductal Carcinoma In Situ)
I suppose I have more questions and should know but don’t if 1) was the whole 12mm removed at time of Bx and 2) if not completely removed what is the risk to develop into a malignancy.
You ask “what did I do?” 2 weeks later I went on a 5 week trip to Spain.!!

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@roch

@jlgc

You're asking some same questions I have asked oncologist about.

I asked if going to do a MRI (which I insisted on) then why do mammograms. He said they each have their own purpose and combination is best. I am 5 years out from treatment and now alternate every 6 months between MRI and Mammograms.

At a presentation by one of Mayo's Breast Clinic oncologist, I asked about MRI vs Molecular breast imaging and she recommends MRI for dense breast.

I am sure some of the guidelines will vary based on individuals.

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Looks like they are gathering more info on MRI vs. MBI
https://www.breastcancer.org/screening-testing/molecular-breast-imaging

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