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Topic: ILC/IDC recurrence after Mastectomy?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jun 24, 2020 10:59PM

Mavericksmom wrote:

Tonight I noticed a small bump on my DIEP reconstructed breast. It feels like a small hard lump just below the surface, about half the size of a pea. I can't imagine that it could be a recurrence because I just had a breast MRI on May 28th because of an area of suspicion in my "real" breast and the report was negative for any malignancy.

I never saw or felt it before, and while I know that getting a recurrence after mastectomy is possible, I always thought when they do occur, that they grow near the breast bone. This is just under the skin on the top side of my reconstructed breast. I am guessing it could be a little fat necrosis or something like that. My focus since my surgery in Jan 2019, has been on my "real" breast.

I plan to just keep an eye on it and if it gets bigger, then contact my MO. Again, with a recent MRI, it seems highly unlikely a cancerous lump would form so quickly. I was also severely burned by radiation in 2003, as in jelly bean size blisters all over the top of my breast. It doesn't seem to be in the area of the worst severe burns, but maybe it's scar tissue that shifted?

Not highly concerned, more bewildered. Any thoughts?

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jun 30, 2020 09:31PM jessie123 wrote:

Mavericsmom -- I think that you are right since you just had the MRI. It would be one thing if the lump was somewhere else in the breast, but since it's just under the skin I'm sure the MRI would have seen it. Maybe you can call the radiologist and ask her to take a second look without having to go into the office. She should be able to tell you what it is as it probably does show up as a benign growth. She didn't mention it since it's not cancer. Good luck


Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Jul 1, 2020 06:16AM Mavericksmom wrote:

Thanks Jessie. You are probably right about the MRI, but I have an appointment tomorrow to have it checked out. I thought about calling the radiologist but I can’t contact her and I feel better just showing the doctor and letting her look at the films or asking radiology to take another look.

No one responded to this post and it went off the “active” topics when I saw another thread about recurrences after mastectomy, so I posted there. The feedback from others made me realize I need to follow my gut, regardless of how unlikely a recurrence may seem. My gut said to get it checked out. I wanted to avoid a visit to the doctor because I didn’t want to be seen as a “crazy lady,” but I know I won’t feel good about it until I get it checked out. I would rather feel foolish for being overly cautious than for ignoring a recurrence.

For whatever reason, when it comes to breast cancer, whatever can go wrong usually does in my case.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 2, 2020 08:58AM claireinaz wrote:

Get it checked out! You'll find that it will be fine, and you can relax. It's hard, I know, to push for further info, but you need them to let you off the hook, and if a conversation with the radiologist will do that, then relieve your stress that way.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jul 2, 2020 09:57PM Mavericksmom wrote:

I saw my MO today. She said it most likely is scar tissue, fat necrosis, or a cyst, but she ordered an ultrasound of that area which actually contains two lumps. I’m scheduled to have that next week.

You are right Clairinaz, I will feel much better knowing it isn’t cancer. Surprisingly my MO said I wasn’t being overly cautious getting it looked at. She said that is exactly what I should do. She also said I will find out right away what the lump is when I have the ultrasound. Of course if it is cancer, I wouldn’t know for sure until I had a biopsy, but the radiologist will at least be able to give me immediate feedback on whether or not it looks benign. The one small lump I am fairly certain is scar tissue, but the other one is the one I am most concerned about because it feels very different. I feel much better having seen my MO today.


Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 3, 2020 01:00AM MinusTwo wrote:

Mavrick GREAT news. Thanks for updating us. We'll be waiting for even better news next week.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 3, 2020 09:08AM claireinaz wrote:

Hi there again-I had an US last Sept because I thought I felt something in my lumpectomy scar. Actually, I felt it for a few days, then went to my PS, who couldn't really find it even with my guidance. He wasn't worried but knew I would be. He ordered an MRI (which my insurance co. wouldn't pay for, unbelievably), but he then ordered an US, which was negative and the radiologist came in and even re-did it with me watching while he talked about it and I could see the screen so that I was reassured there wasn't anything problematic there.

I have breast MRIs every 3 years as part of my implant checkup health. The last one I had was 2017. Insurance pays for one every three years, so last Sept I hadn't made it to 3 years and that is why they wouldn't cover one. I will schedule one for this Sept. Gold standard for check up care, and because I have implants, it's also a good thing to do anyway.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jul 4, 2020 07:40AM Mavericksmom wrote:

Hi Claireinaz! I am always able to see the screen for breast ultrasounds and I agree, it is very comforting to be able to do that. I used to do US on animals years ago and so it feels kind of nice just being in that setting, even though the subject is my breast. I am leaning more and more towards feeling the lump is a cyst, but of course I will need the US for confirmation.

It is interesting to me how my thoughts on my entire cancer journey has evolved. Maybe it is just me, but whenever issues arise, they can really turn my mindset around. Whatever the result of my US, this has been very positive for me. Finding the lump in my reconstructed breast made me realize the importance of doing self exams on the reconstructed breast as well as my real breast. That alone will have a positive impact moving forward. It also gave me some "peace of mind" for decisions I made at the onset of my Dx with ILC in Dec 2018. I blamed myself for not being more assertive and going for a second opinion after being denied a BMX. While I do still believe that ultimately it should be the woman's choice, I now forgive myself for not going for a second opinion. I have more of an understanding of the fact that while mastectomy greatly reduces the chance of cancer, it doesn't eliminate it. I look back now at what I thought I wanted, both breasts removed with no reconstruction, and I know I would not be happier now, in fact, thinking of what my body would look like under that scenario I am fairly certain I would be much less happy now. I do feel it should be a woman's choice, but for me, in this one instance, my doctor made a better decision for me than I would have.

In the end, as my social worker used to tell me, we make decisions that are the best for us at the time of whatever issue is happening to us. Second guessing ourselves doesn't usually help the situation, and in my case, it added a great deal of stress moving forward.

So, whatever the outcome of my US next week, I am prepared for whatever the result. This experience has helped me feel more positive. I feel no stress over the US because I know it is most likely benign and in the off chance it isn't, I have a team of doctors I trust to treat it.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 8, 2020 09:00AM claireinaz wrote:

Please update us when you know, Mavericksmom! I think our intuition is a strong tool, and listening to it can help us in our own proactive health care.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jul 8, 2020 01:03PM Mavericksmom wrote:

I got great news, it was fat necrosis! I will have a follow up US in 6 months but I could see the screen the entire time and I am sure the radiologist is correct!

Thank you for your support!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Jul 9, 2020 12:29PM KMom57 wrote:

Great news!!!!!! So happy for you!

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 13, 2020 09:02AM claireinaz wrote:

Congrats! I know that feeling of relief!

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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