Recurrence after bilat mastectomy?

Forgot to say pretty sure it is a lymph node.

Hoping for the best outcome for you. I had a small lump that had to be biopsied too. It is so scary! Wishing you the best next week.

Hello Ladies

Just had surgery yesterday for recurrence after bilateral mastectomy 1 year ago.

Last year I had a low oncotype score of 10 with no lymph node involvement and so did not have chemo or radiation, but was given tamoxifin. I really thought I would never have to worry about this again, a closed chapter with that low score.

Tumour recurrence was already 1.5 cm on ultrasound, does not appear to have lymph node involvement but surgeon did lymph node dissection to be sure. I worry about the prognosis of short time of disease free interval, although the cancer is localized. Is this on your minds too?

Snowflake, I had two "local recurrences" after my initial treatment, also very quickly after going through treatment the first time. Some doctors I consulted with thought that I had a "persistence" rather than a true recurrence. In short, cancer cells were most likely left behind and continued to grow. It's definitely not an ideal situation, but it can be dealt with.

As for worrying about survival - I think does weigh more heavily on those of us who have had the cancer come back locally - but as my MO reminds me, we are treating this with curative intent. It's still a tough situation though. Hugs and best wishes to you.

Hi Laura, Karen, buttonsmatch-thanks for sharing your reassuring personal situations. I am feeling much more positive and have chemo next week-I feel that having not had the chemo before and getting it this time is going to nip it in the bud for good. My surgeon also referred me to a radiation doctor that has been doing studies on radiation for breast reconstruction, so I'm in good hands.

Karen-I decided not to get another oncotype score because I want to get the chemo asap and the wait for the test could be a while from what I remember, and no matter what it says after last time I'm going to have doubts.

Julie

Hi, I was reading the comments here and I am wondering if any of you could offer some advice?

I had a left breast mastectomy in January of 2019 with DIEP reconstruction for ILC. In 2003 I had IDC in the same breast, treated with two lumpectomies, chemo and 33 radiation treatments during which I was severely burned. I do have large areas of scar tissue in the reconstructed breast skin tissue.

A few days ago I noticed a small lump, about the size of a small pea, on my reconstructed breast. It is hard but doesn't feel like the other areas of scar tissue.

Is it even possible for a recurrence to show up under the skin on the top side of a reconstructed breast? I always assumed they only occurred at the incision area.

I just had an MRI in May, for an area of concern in my real breast, and the report was negative for any malignant or non-malignant growth on either breast.

I don't know if this is something I should tell my doctor about or just wait until my November appointment?

Thank you Minus Two!!!!! I will call my doctor on Monday. I realized that part of this is my fault because I never did self "fake breast" exams, I focused only on my real breast. Now I know I should do both, regardless of what this is. I actually saw the bump in the mirror, otherwise I still wouldn't know it was there. By not doing self exams on my reconstructed breast, I really have no idea if this is lump is new or has been there all along. I don't remember it being there prior to my surgery, as I was pretty good at doing regular self exams after my Dx in 2003. It could very well be a bit of scar tissue, but I agree, better to ask than to self diagnose.

It is ironic too. I have a strong family history of breast cancer and wanted both breasts removed, but my doctor said they don't remove healthy breasts at that hospital, unless a woman is BRCA +. I am BRCA negative. I now see another side to it. Reading what others posted on this thread made me more aware of the fact that mastectomy REALLY isn't 100% either! As for the low percent of positive recurrence after mastectomy, my oldest sister had both IDC and non-Hodgkins Lymphoma at the same time. She developed a third cancer, MDS, from the radiation to treat the other two. There is a less than 1% chance for that to happen, but she was in that "unlucky" club. I guess when we hear a low percent about anything cancer related, we tend to forget that it still can represent a lot of people.

Thanks again!

Growing older, growing wiser.

Minus Two, I don't know what it is and because of that, I decided I am making an appointment with my MO not with her NP, who I see for normal follow up visits. I really hope she will want a biopsy, unless she is 100% sure it is scar tissue. I don't know how she could know that for sure. The only thing that would make me think it is ok to just observe for a period of time and not do a biopsy, is if there is mention of this area in my records somewhere. I don't remember any mention about this spot before, but maybe there was and I just forgot about it, since much of what went on the first 9-12 months after my reconstruction is a blur to me now.

I guess I was feeling very "cancer free" after the MRI showed no areas of malignant or non-malignant tumors and this showed up out of nowhere. Now I keep wondering if there is any way that the MRI missed this. I read somewhere that cancer cells take two months to double in size, so I assume it was about this same size on only slightly smaller 4 weeks ago. Not sure for what grade they are referring to in reference to the two months.

Anyway, I am going to get it looked at and then I can put my mind at ease and focus on losing weight and being healthy! I will let you know what I find out, but it may be a while before I can even see my MO.

Thank you Karen! I wish I had your “gut” because my gut isn’t being too helpful. Sometimes I feel certain it is a recurrence and sometimes I feel like it is scar tissue. But, one thing I do know is I must get this checked out! I do hope I don’t have to wait too long for an appointment. I will let you know what I find out when I see my doctor.

Mavericks - keeping you in my thoughts. Let us know.

This is 3rd time BC for me. My MO thinks occurence is "new" rather than recurrence, but admits there is no way of knowing. It seems like monitoring is almost non-existent if you've had a bilateral. She wants me to do more genetic testing. Did this last year specifically for BC, Over 20 markers checked, none found, so why do more testing? I am now taking Ibrance and Arimidex, tumor shrank from 2.5 cm Sept 2019 to 7 mm April 2020. I asked if PET would be used if cancer seems to shrink to oblivion, and she said "no" because of radiation risks vs benefit. I am worried about those rogue cells and suspect they are the cause of the 2nd and 3rd cancers. Concerned about getting new tumors as well as metastasis, having them get really bad, without early detection.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast, mammogram. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Started Anastrozole, quit after a few months, joints, Several months later started Tamoxifen.

2019 ER+ R-axilla. My Right arm had swollen up. Scans found tumor. Biopsy revealed cancer. Started Ibrance and Arimidex.

BlueGirlRedState - I know many MOs are reluctant to do scans if there are no symptoms of spread. Keep in mind it likes to spread: bone, liver, lung, brain. Any symptoms related to those should be reported & followed up. Blood tests can be a clue - if you run liver function tests for ex, anomalies can be sign of a liver met. Afaik, the stats still show that 30% of early stagers will develop mets eventually. With 3 run-ins with it, I think I personally would want a baseline scan of some type.

CT scans are about 1/2 the radiation of PET, btw. MRI doesn't expose you to any radiation.

I was never told what are the symptoms of spread. Pain? Weight loss? What else should someone look for. What do doctors check if they don't want to order scans.

So sorry to hear about your recurrence.

I'm also in that club. Had a mastectomy and chemo/herceptin for my stage 1 cancer a decade ago. Right about on my 10 year anniversary I was diagnosed with a 1.6 cm tumour on my mastectomy site. Went through a lighter course of chemo this time, plus radiation (which I hadn't done before). They are saying it does happen, although very rare (1 percent chance). Best guess is that a few stray DCIS cells were leftover, since mastectomy can't get rid of every single breast cell. If that happened, then it makes sense, since chemo and Herceptin can't kill DCIS, and it would have taken a decade for one or two cells to turn into a small tutor.

If you are at the start of this process again, I will say that I found it a bit easier the second time around because I know a lot more about what to expect. Also, treatment and prognoses have improved in the past decade, so I did find the cancer centre a more positive, optimistic place.

Thank you Ladies. Seems like typical symptoms from AI