Cancer-free since 2004 but strange occurrence--need help

ILC2003

I was diagnosed with ILC in right breast in 2003 with 2 positive nodes. Cells around margin were markers that I was at increased risk of new CA in either breast, so had chemo and bilateral mast. Still on AI. My derm removed small cyst in my groin, which i've had for years. Biopsy by derm path lab said it was carcinoma, either metastatic or primary adnexa carcinoma. Had PET/CT today. Report says there are 2 focal sites of increased tracer uptake--nodular densities that may be intramammary lymph nodes. No increased activity in axillary nodes. Impression: Right internal mammary lymphadenopathy. Since it's Friday of Labor Day Wknd, my onco won't see this until Tuesday. Already sent her slides from groin biopsy.  Anyone had something like this? Could it be mets? What the heck is the thing in the groin? No clear margins there, so need more surgery. I thought I was DONE with breast CA...

toomuch

ILC2003 - I don't have any experience to share. It stinks that this is happening and you have the added stress of a holiday weekend. Hoping that you can stay busy over the weekend that you get some answers on Tuesday.

Denise2730

ILC - what is happening?

ILC2003

The pathologists  in NYC requested more specimen to do their own slides and stains. Tumor board looked at results. They are consistent with metastatic Breast CA, Biopsy show "very extensive infiltrating tumor involving the dermis and subcutaneous tissue." My original cancer was Estrogen+. This isn't, but is progesterone+. The carcinoma is poorly differentiated.  My insurance company has assigned me a case manager to help me get an appt. at Johns Hopkins (I live in MD now).  I called their new patient appt. line last Tuesday and a coordinator was supposed to call me back the next day.  I didn't hear back for a week--after the case manager intervened.

I'm very scared.  I talked to a doc from my insurer--she's a breast ca survivor--and she said they will want to do extensive workup, e.g. maybe colonoscopy, pelvic ultrasound.  I really, really thought I was cured.  I just can't believe this is happening.  I've waited to tell my grown kids because I didn't want them to worry, but decided it's time. I need their support!

If anyone has had anything like this--showing up randomly in the groin--I'd like to hear from you. 

AmyIsStrong

Don't know anything about this, but wanted to send love & support to you from another MD person. Rest assured that you will be in excellent hands at Hopkins.

Also, we have a nice group of Balt ladies who support one another. There is a facebook group called Breast Cancer Divas. There are occasional get togethers which are really upbeat and supportive. I think this link might work https://www.facebook.com/groups/344902452920/  If it won't click, cut and paste into your browser. If you need help, put a post there and local women will respond.

ILC2003

Thank you so much! I live in Ellicott City.  I sent a request to join the Divas.  I see Dr. Deborah Armstrong on Monday (10/3) morning. She's a Hopkins oncologist who specializes in breast and gyn cancers. Has anyone heard of her?  Hope to know more after appt. 

toomuch

ILC2003 - I don't know anything about Dr .Armstrong but I did go to Hopkins for a 2nd opinion and really liked the doctor that I saw there. My onc was deciding between 2 chemo regiments and the Hopkins doc talked me through why he thought one was a superior choice to the other for me. I hope that you are as pleased with Dr. Armstrong and that by next week you have a plan of attack!

LoriKnous

ILC2003  I know the feeling. I was hitting my 5yr and felt something was wrong. I was having bladder problems and hit the gyn for the anual and boy o boy. Both the gyn and the urologist sent me in for a CT. I ended up going in for a bladder bioposy and they said that my orighinal bc had mets to my ovary and fused my bladder to it. I always hear about mets to the liver, bone and brain. The onc told me 5 years ago that it was a 2 to 4% chance that my cancer would go to any female organs. I didn't need to have anything removed. What the hell happened, now I just wonder if there is anyone else out there that has any insite on this. The boat we're on seems so isolated.

exbrnxgrl

ILC2003 has not signed on since Oct.2011. This appears to be an old thread.

ILC2003

I am still here, but posted a question on another board recently.  I am on Tamoxifen and had radiation therapy last summer on two intramammary nodes that appeared as mets in PET/CT scan and the entire breast where my original tumor was found.  I had a clear PET scan in December, so I'm currently in remission and will be followed up at Johns Hopkins with PET scans every six months.

The latest complication in my story is that the radiated breast has become very hard and the implant is no longer symmetrical with the other side. It's pushed up almost to my clavicle (way too much cleavage!) and is almost two inches higher than the other side. I had a consult with a plastic/reconstructive surgeon. She said she would remove the affected implant and replace it with a smaller one, but didn't sound very encouraging about the resulting esthetics and said there's a high risk of failure of the implant because the radiated skin doesn't heal well.  I would love to hear from folks who've had radiation after reconstruction, if they've had a similar complication, and what they did about it. Should I consider just having the implant removed and use a prosthesis on one side?

Thank you for any advice anyone on this board could offer.

PeggySull

I, too, would love to hear about people's recon experience after mastectomy chemo and rads.



Peggy