Internal mammary node involvement.... anyone??!!
Ahhh! I have been driving myself crazy thinking and worrying about this the last week and not finding much information. I’m looking for someone that has or had internal mammary node involvement. The radiologist said the only way to treat it is with radiation. This scares me. I feel like anything cancer has touched should be taken out. Those of you with mammary node involvement, what was the treatment plan???
Thank you!!!
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sunflower - I had internal mammary node involvement. I was treated at msk. I too tried to petition to have them removed but it was eventually decided to treat with radiation. Here is the thing - those nodes are somewhat hard to get to and the surgeons can be unsure that they got them all. It will cause a good amount of tissue damage and what is very important in our situation is to get to radiation.
I participated in the RADCOMP trial for proton radiationso that they could really zoom in on those internal nodes and blast them! Proton radiation is more precise. RADCOMP is still enrolling nationwide! Ask for a consult with radiology ASAP and ask about the clinical trial. You WILL qualify with internal ary node involvement.
FYI - I was diagnosed in 2016.
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I too had internal mammary lymph node involvement, plus a supraclavicular node, which made me Stage 3c. Standard treatment for IBC includes radiation after chemo and surgery, so the only difference for me was a wider field of radiation than someone with IBC at Stage 3b, and a few more sessions (five, if I remember correctly).
In pre-surgery discussions I had insisted that I didn't want the axillary lymph nodes removed, arguing that we were relying solely on chemo and radiation for these other lymph nodes and I really wanted to reduce the risk of lymphedema. Since my post-chemo PETscan was clear, my medical team discussed this amongst themselves and colleagues, and finally agreed to go along with my non-standard surgery. I'm kind of grateful for those wider-spread, surgically-inaccessible lymph nodes as they saved my arm.
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Hello Sunflower,
JCCD is right : the proton therapy is a very good option. For a moment, my MO thought I had an internal mammary node involved. They did a biopsy and it was not cancerous. It was just a reaction to the implant disease (the node disappeared when my implant was removed). But the proton therapy option was explained to me.
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Did any of you have a complete response to chemo and still do radiation??
Misstic- How did they do the biopsy??
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I had internal mammary LN involvement. I was 9 years out in July! They did do radiation to the area and had to hit my heart...left side, no choice. I now have some heart arrhythmia's but that could be from chemo also. I also had a PET that showed it had returned in that area several years ago but biopsy showed it wasn't, thank you Lord. It's very scary, just trust that your LN did their job and caught it all from spreading and chemo and rads will do their job also. I'm sorry you're dealing with this. Hugs.
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How was the biopsy done? I’m not sure why, but knowing that these LNs are involved scares me.
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I had internal mammary lymph node involvement found by chance during DiEP reconstruction surgery. 2 nodes removed, both turned out to be positive. This was 8 months after finishing chemo and rads the first time. It freaked me out as it meant chemo hadn’t touched them nor tamoxifen. After a lot of research and discussion. my team agreed to retreat me with radiation targeted to the internal mammary area, Proton not available but I did a breath hold technique designed to protect the heart. So you have options. During my research I found papers which said a lot of women with axillary node involvement probably have IM nodes involved too - maybe we’re the lucky ones to have had the DX and treatment. Good luck x
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This is an older post, but I thought I'd reply with my experience because us internal mammary BC folks are in a weird grey area club and I know I felt 100% alone when I got my recurrence diagnosis because I didn't fit nicely into the early stage group or the mets group. There was no support group for me.
In July 2019, my annual breast MRI found a recurrent tumor in a lower internal mammary node. My oncologist at Mt. Sinai and 2nd opinion oncs (including breast surgeons) all said radiation was my only tumor treatment option. I was urged to go to MSK (as they have expertise in the uncommon cases) and I'm very glad I did. The oncologist immediately referred me to an MSK thoracic surgeon. I saw him the next day and saidhe could likely remove it via robotically (VAT surgery) vs invasive surgery - opening chest. And happily he was able to with clean margins.
I followed that up with a switch to an AI and then proton radiation (they radiated my entire left side - mammary chain, super clavicle, axillary nodes and breast) at the new proton center I'm upper Manhattan. That was an adventure and it ended just before Covid hit. My breast is now half its size, but whatcha gonna do (you know, other than more surgery) 😉.
I'm now two months into Verzenio due to the positive data coming out of the trial. It's also been an adventure and the reason why I resurrected my BC.org account. I need recommendations and commiseration.
TLDR: If you get a tumor in your mammary node, get a consultation with a good thoracic oncology surgeon. The new robotic surgery techniques can make it possible to excise hard-to-reach tumors.
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Graceber,
Thank you for your response. I am not in this situation but your generosity to share is inspiring.
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Thanks for your post, GraceBer. Good to know about laparoscopic surgery and proton treatment in Manhattan. Is the latter at MSK? Coincidentally I was in NYC visiting my brother who was being treated at MSK when they were setting up triage tents in Central Park. At initial diagnosis (Stage IV de novo) I also had internal mammary node involvement and got chemo, surgery and breath-hold technique radiation to the same areas you had radiation plus thoracic spine. That was in 2007-2008 and I have been NED since.
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Hi Heidi - What an interesting and unique journey you’ve had. Thanks for sharing.
The proton radiation center is a joint venture by MSK, Mt. Sinai, Montefioure and some kind of healthcare investment group. Because I was able to have surgery, radiation was not originally in the plan and photon was definitely ruled out because I’d already received it after the 1st diagnosis. Proton was the only option because my lung and heart could be spared further damage this way. The whole experience was crazy. They have a whole breathing apparatus I was hooked up to with an accompanying computer program. My sessions took over an hour every day due to having to using multiple CT scans to position my body exactly every day and due to the fact there is only one proton beam to be shared amongst all (4 -6) treatment rooms. I learned to hold my breath for 1 min, 40 seconds. I had to hold my breath about 10 times each session It was so incredibly involved. This all happened exactly a year ago. Oof! It all feels so surreal. I’m glad it’s over but I’m now having fun acclimating to Verzenio - the reason I’m back in these forums Fun times! 😉
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thank you for posting! I too had a reoccurrence in the mammary chain. I was told chemo for life. Currently two years in to it as well. I have been Ned on scans since July 2019.
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Hi Summerspring:
Chemo? Are you on a traditional (cancer cell killing) chemo or a biological drug like a CDK 4/6 inhibitor? If a biologic, which one (if you don’t mind me asking)? I’m curious to see how others are coping.And I guess we both had our recurrences about the same time. The best explanation/guess as to why I had a recurrence in my mammary chain is because I’m “wired differently.” Instead of fluid draining from my breast to my axilla nodes, the drainage may flow the other way. I may have had a cancer cell in my mammary node as part of my first diagnosis that was too small to detect on MRIs and was kept at bay with Tamoxifen until Tamoxifen was no longer effective. I’m just very thankful my 2019 annual breast MRI caught the tumor.
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hi graceber-I am on carboplatin. I hope you’re doing well.
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hi, thanks for sharing your all stories, it's v inspiring. It's been really hard to find people with these nodes involved so makes me feel less alone too. Tho obv sorry you are here too.
I have 2 internal mammary nodes involved, found at diagnosis. No other spread as far as they can tell. Feels like I have had every scan going so hoping that is true.
Just coming to end of chemo & have had a complete radiological response (both nodes & breast) so waiting for surgery options. There was originally talk of removing the nodes (they are accessible) but in light of being in the middle of a pandemic & the possibility of needing an ICU bed ( (scarce here in the UK) it's looking like extra radiotherapy instead.
Not sure how I feel about that. Understand it in the current situation but feel v nervous about leaving them in. For those that had radiotherapy, is that usual & how do you get over that? I feel I'll be constantly worried.
An added complication is the biopsy had me as ER+ & Oncotype as ER-. So not sure yet what further treatment will need.
It's like a never ending rollercoaster at the moment 😬
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Hi. I just had a lumpectomy for left lower inner quadrant cancer. I have a small internal mammary node , 5 mm on PET scan. They say biopsy or removal is not possible and I need radiation. I asked about proton therapy and they said it is not standard of care. I did not know about the rad comp study. I will definitely ask my rad onc about it. Not sure they will be supportive but it does not hurt to ask.
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