Mastectomy 2017, new lump this week.

SBKH

Hi there,

I had a bilateral mastectomy in 2017 for DCIS and intralobular hyperplasia. Since then, the only checkup I've had is the dr feeling for lumps. No imaging. So since it's been 4 years, I asked, "why not imaging?" I'd rather catch something BEFORE it's palpable. And my dr. said - sure, let's do an ultrasound. The ultrasound turned up a 6x4x2 mm nodule. I have a core needle biopsy next week. The whole point of the mastectomy and no reconstruction was to be off the biopsy treadmill (I was lumpy bumpy). I'm angry, scared and sad. And I'm in a new city - so not even with my the practice that knows me. I'm feeling pretty sorry for myself. Anyone else been through this?

Spookiesmom

Me. Had bmx in 12. Kept my port, so would see MO every few months. In 19 I found a lump in the nodes on the other side. PET/ct lit up. 7 positive nodes out, rads again. Currently on ibrance and letrozole.

SBKH

I wish they would do PET instead of the core needle biopsy. I don't know if PET can rule out cancer - I just hate the core needle one because it burns so much. And it's ridiculous that if you have a mastectomy without reconstruction there's no imaging. I get that they can't do a mammogram without the tissue - but why not MRI or U/S or something annually?

LovesLiterature

I’ll tell you why… M O N E Y! It costs an exorbitant amount to run those scans. I’m in the same boat as you; had bilateral mastectomy in 2016 and all they do is feel my boobs. Not real reassuring. I’m sorry you are going through this. Hang in there.

SuQu31

I had a bilateral mastectomy for DCIS, and voiced my concern to the surgeon that it did not make sense to wait until a lump is felt to do screening, particularly since the DCIS showed up so clearly on the mammogram. Also, I had a close margin and re-excision, so I am concerned about that area. She agreed to annual mammograms (both sides) for five years. She possibly saw “something" in the area where the original DCIS was a few months ago, and I have a follow-up mammogram in a few weeks.

Apparently it is unusual to have any regular screening after mastectomy, whether you have had reconstruction or not. The tech who did my first mammogram after mastectomy almost refused to do it, because “we just don't do that." It certainly is possible to have cancer recur, or develop a new cancer altogether, even after mastectomy. Waiting for a palpable lump seems ridiculous to me.

I am so sorry you are going through this. I hope you will let us know how the biopsy goes. I will say that it seems like the biopsy is the quickest, most definite way to determine if it is cancer or not, although I totally understand your desire to avoid it. My biopsy was the worst pain of my entire experience.

SBKH

@lovesliterature - Yup. I just saw how expensive it is!

@SuQu31 - I haven't been offered a mammogram because they said with out any tissue - there's nothing to put between the plates.

Meanwhile today I finally talked to a nurse who was like "oh the radiologist thought it might be a small lymph node" and I did have my covid booster and a flu shot in the last 8 weeks. It's on the side that didn't have cancer, just intralobular hyperplasia. So I asked if they wanted to just repeat the ultrasound in 4 weeks and then if it's still abnormal do the biopsy. So far, I haven't been able to talk directly to the dr or the radiologist which is super frustrating. My group in Atlanta was the best and you could speak to everyone directly. They agreed to push it now but now I'm sweating that if they find something - the holidays will get in the way of treatment and my deductible starts over in January. I wish I had a better group here to walk me through the pros/cons.

Crystal15

SBKH, sorry that you have to go through this. Hope it is only a swollen lymph node.

I had unilateral mastectomy 6 years ago. Early this year, I felt a nodule on my mastectomy side, did US and radiologist said it is fat necrosis, a followup US in three month, no change. But after second followup in another 6 months, radiologist suggested biopsy and it is cancerous. It has been cooking in there for 9 months!

I have always been vigilant through out the treatment process, but many times they were false alarms. This is the only time I should have insisted for a biopsy after the first US, but I did not. Here I am with a 9 months delayed diagnosis of recurrence, possible mets - waiting for PET test next week.

I think biopsy is the quickest way to determine if it cancer and you will have a peace of mind if it rules out cancer. It seems the way they are doing the biopsy has changed. I definitely did not feel much pain this time compared to 6 years ago.

SBKH

@Crystal15 Thank you for sharing that. I'm so sorry - that is really frustrating/scary that it's been there all that time! Prayers that there are no mets. You've made me braver about getting a biopsy. The good thing that happened was that I realized I don't like my cancer care team and I meet with a new group Nov. 30 and so far - they are already miles better. If I do have a recurrence - I will be in much better hands.