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Topic: recurrence worries after mastectomy no recon

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Jan 1, 2020 04:53AM

blah333 wrote:

I will make another post in the worried about recurrence forum but I know when people feel little lumps or bumps after they've already had breast cancer surgery it can be different if you've had recon vs. flat.

ANYWAY I had DCIS two years ago and am alarmed because after some random electrical/nerve feelings one morning in bed when I turned on my side and looked down I could feel a little pea like bump under my skin that was not there before. It is about 3/4" below my scar line, in between two of my ribs. It does feel quite like what I remember my lump feeling like - my DCIS was originally found that way by a doctor. However, my DCIS was the upper outer quadrant. However it was multi-focal, and the total span was 6cm. They drew this on me once with a pen, which was well above this area.

For those who have had recurrence OR it turned out to be scar tissue/lipoma, what did it feel like? I was initially told that recurrence would appear along the scar line; I thought that meant literally on the scar line. I made a friend feel this and they looked alarmed/they could now understand what I was worried about. They said to them, 3/4" away from the scar line is still along the scar line, not that it matters. I just feel like I was given a lot of nonchalant information like "less than 5 lymph nodes taken the risk is very low just avoid repetitive movements" -- yet I've been jacked up by swelling and have had ribs pushed out of place and nobody who can help me with that.

I was laying on my side in bed making this post and noticed a second visible bump, same (affected side) under the scar. I can imagine that might be scar tissue but I have healed quite well so far. Either way this is quite alarming. Of course I jumped to the most doomed conclusion. I remember how "rock" like and granular scar tissue can feel, this seems different :(

If it is cancer again, I know they'd try to remove it. If it's that close to the scar would they just cut along my original scar or make a new mark?

I am worried because I've had swollen lymph nodes since my surgery that this would somehow be invasive as well, though I know it is *supposed* to be rare to jump from DCIS to invasive fuck I'm sitting here even worrying about Stage 4 possibility over this. They did a biopsy on one node and put a clip in it, but those samples came back as muscle tissue. A month later I went back in to redo the biopsy, and a second node had swollen, so they biopsied that one instead as it seemed larger, and it was benign. But the node with the clip never got biopsied. Fine Needle Aspirations are hell, and so was waiting 5+ weeks to find out if I had cancer again. Both biopsies were 1.5 hours on a table having a needle push around inside me. I dread it. It has been terrible seeing people reflect on the decade and excited to start a new year where I feel like I am going to die before 40... missing two nodes already impairs my life. I am a low income person who goes to an educational hospital and feel like I am in the hands of incompetent people. I dont' have an oncologist either. They just assumed, DCIS, double mastectomy you're good to go.

If it is not invasive is it just surgery/radiation? I wish I had answers now. I am going to have someone look at it on Friday. I imagine from feeling it they will then tell me to go get an ultrasound, hopefully I can do it that day. This forum can be hard to glean info from by doing a search; that is to say what my odds are seems like a mix of scar tissue scares and recurrences. I hate that this will be a specter in my life forever. The people I know who know I've been through this just think I'm done and fine. They have no idea I can barely carry things in my left arm for fear of lymphedema, and having ribs pushed out of place which is uncomfortable... that I've had to worry about it being back just 10 months after surgery and all the other degradations that come with this. It's alienating and depressing. Would be much easier if I was in my 50s and had peers going through the same thing. But I'm getting off topic now. Happy New Year.




Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Jan 1, 2020 03:48PM - edited Jan 1, 2020 03:49PM by MinusTwo

Blah - I just made a long post to you on another thread. I'll try to find it and copy here.

Blah - Waiting is horrible but take a deep breath. Swollen lymph nodes can be caused by so many things. I see you already have a doc appointment so try not to worry. I sent you the LE link on another thread where you posted. Maybe ask you doc about seeing a trained, certified LE therapist.

I had a BMX and reconstruction with no other treatment. It's my understanding that they do NOT do rads after a BMX. I did have lots of imaging that showed everything was clear. Two years later, I had what was called a "local recurrence" up by my collar bone. In my case there was no breast tissue left (although that's a possibility) and my surgeon got clean margins. She was horrified. I love my surgeon and believe she did the best job. The recurrence was not DCIS (because of course no ducts), but now IDC. Apparently caused by a rogue micro cell that migrated before the surgeon could get it.

Hope what your facing is scar tissue or some other benign issue. Please know that we're waiting with you.
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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Jan 1, 2020 04:00PM MinusTwo wrote:

blah - I'm sorry you feel that it's hard to get information on this BCO site. I've seen that a number of us "old timers" try to read the 'active' threads and respond if we have experience with the issue. And also post reference to other relevant threads or information. If you stick to one thread, people get to know you and can provide better feed back.

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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Jan 1, 2020 05:33PM blah333 wrote:

Yeah, nobody responds to my threads. i basically have to mine past posts for information.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Jan 2, 2020 06:36PM wallycat wrote:

Apologies on not seeing your post ....I rarely look at the recon or not to recon since I presume those are the questions. I didn't see this post on the worried but not recurrence--or some such board--so here I go.

I had no recon and several months after my surgery, I developed a small, moveable lump about 1/2 inch below my mastectomy scar. Totally freaked. My breast surgeon was convinced it was a lipoma/fatty thingie. Because he and my other docs were wrong about EVERYTHING regarding my cancer, he said he would remove it right away. It was a fatty thingie and not cancer.

As for the tingling or zaps or occasional "pulling" feeling---I still get that 12 years out. I think our nerve endings take forever to regenerate and that is what is happening. I would worry if it were 24/7 for weeks on end but here and there, I tell myself it is just the regeneration.

Best to you and so very sorry that few people post responses. Good to put it in several places. I've had a few of my posts with few or no replies...I have to think people miss it or are busy and not that I am unique :-)


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jan 6, 2020 08:55PM Longtimesurvivor wrote:

Hi Blah

With regard to your question about recurrence If it's that close to the scar would they just cut along my original scar or make a new mark?

I had a mastectomy at age 38, and 3 years later it recurred on the scar itself. I didn’t even notice it. It was picked up during an exam bt the doc when he felt the incision site. It felt like a small pimple. They took it off with surgery and it was treated with chemo.

I don’t know if that answers your question or not.

All

DX1998-Mastectomy; recurrence 2001/AC/5FU/rads,Tamox1yr.NED-2010-/Hercep 2015.TDM 18mos; Brach.plex-TX/Perj/Herc6mos;rads;Herc/Perj indefinitely Dx 2010, IDC: Mucinous, Left, 3cm, Stage IV, 0/3 nodes, ER-/PR-, HER2+
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Jan 19, 2020 11:00PM msphil wrote:

hello sweetie I found lump in shower diagnosed while making 2nd marriage plans. I wanted lumpectomy didn't want to into new marriage with one breast. But decided with doc advice to get mastectomy. Glad I did had reconstruction but after one filling in expander I got high fever rushed to hospital by fiance took me in right away implant removed it had hardened that gave me great pain. Since then wear prothesis in bras and never looked back. In bathing suits and all and can't tell. Thank God didn't have to worry bout recurrence. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married then 7wks rads then Honeymoon then 5yrs on Tamoxifen

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