Subcutaneous Lumps

Hi Katy. I also have had skin mets and subcutaneous mets, biopsied to determine the type of breast cancer as I have had three different types. I am a bit surprised your oncologist hasn't seen this presentation. Mostly, I am surprised because, although I have been told it is quite rare, I see people post on here and on Inspire with this very issue. So, my guess is that those with skin mets and subcutaneous mets mostly have other areas of disease as well and it is just used as a way to measure response to treatment.

At this point, the only spots appearing and indicating metastatic disease in my case is the skin mets and the "lumps". I have them on my chest, neck, and on my scalp. I am told it is highly indicative of other mets and they will show up soon. But, so far, that is it. We will see.

My mets are HR-, HER2 +. So, I get Carbo, Taxol (can't take Taxotere due to a reaction last year), Herceptin, and Perjeta. So far, this mix is working quite well. The bad is: my counts are horrible. My most recent tests show a platelet count of 35k, with other counts not good as well. So, I think my treatment will be delayed and I may be getting a transfusion, I actually look forward to feeling better if I get the transfusion, so all is good.

Anyway, I hope my experience helps you.

Blessings!

LOL! I can identify with watching everything to see if it is going to turn into one of those "lumps". I too will be interested in seeing if we have company with this experience. I think the ability to see if treatment is working by watching the spots shrink is an interesting benefit of this presentation of mBC.

Thank you for indicating AC works as well. I had AC back in 2011 but if this treatment stops working I am encouraged to hear that it is working for you. The more treatments on our list, the better.

No doubt your onc indicated not seeing this odd presentation. I was told, very bluntly, that this unusual situation has no trial experiences to use as a guideline. I just find it interesting after seeing people indicate their experiences on the Internet.

Thank you, Katy for bringing this presentation to the spotlight.

Hi Lena, Katty and Casun, Checking in to see how everyone is doing. Casun, its good to know what the scalp mets are and how to proceed with treatment. California should have some oncology resources that are familiar with this kind of met, but then, its not that common, I guess.

I don't quite understand why stage 4 cancer is characteristically treated only if a metastatic site is painful or impingeing on a major organ. I would think that scanning routinely would reveal early stage mets and enhance the effect of tx. I guess this policy could change as more stage 4 patients live longer.

I gave up the Afinitor due to how crappy it made me feel. Maybe if I get sicker and need it more, I'll man up and do it. But so far, Aromasin is helping to keep things quiet. I have more energy and less chemo brain now, but am losing hair and seeing myself age more by the day! I'm hatin' that part of this treatment.

Katty, are you still stable with letrozole and ibrance? How are the side effects?

Lena, what is happening with you now? Hope to hear from all of you. Xo Mame

hi, I had another subcutaneous area biopsied to check for mets and of course it was...... However none of these lumps or mets are appearing in any of my scans. CT/PET or MRI...

Can't remember if I asked yet, but do your subcutaneous mets appear on your scans? Or how do you track them

Kristi- yes I can feel mine. And you can see them with your eyes.. mine feel like a hard pea underneath the skin. That's excellent you have been stable on tamoxifen. I kinda wish my oncologist would let me try this before bringing out the big drugs. I am starting ibrance/ letrozole soon

Hello ladies! I apologize for being out of contact for so long. I have been fighting the side effects of treatment and will be glad when the "big drugs" are dropped to give me a break. Herceptin and Perjeta will continue for now.

The lumps on my chest were quite visible but appeared to be scar tissue from previous surgery. My lumps do show on PET scans, that is how they were initially shown to be the cancer back again. I had amazing results from the Carbo, Taxol, Hercetin, Perjeta combo until Jan. I had a PET scan showing two "areas" in the liver but no tumors. Odd. So, we are watching to see what is going on. Tumor markers are worthless for me. Sadly. My lumps were about 2 cm each or a bit smaller. Three of them have just disappeared but show "treatment effects" on the PET scan. I have one spot the may be growing the I initially thought was scar tissue. But, we are going to drop the "big drugs" and let my body get a break and see if things show themselves. The scalp mets disappeared by the third treatment but they looked more like a nasty rash with a couple of spots the looked like angry spider bites. The scalp mets did not appear on the PET scans.

I find it interesting that this odd presentation is not specific to one type of breast cancer. Katy, Casun, Mame, and Partyoffive I hope you are all doing well.

Blessings!

hi TNMTNGAL, are they planning on doing a biopsy or scan? I have metastasis on my chest wall and on my scalp. They do not hurt. They are hard or rubbery in texture. Some people say it’s like a Lima bean?

the one on my chest was close to a scar and almost mistook for a raised scar. Hope this helps.

Same thing happened to me. I eventually went to a dermatologist. Told them I had a cyst on my scalp....and they immediately biopsied.

If its truly raised or on the skin try a dermatologist or I was also told you can go to your breast surgeon to get anything suspicious looked at and biopsied. Sorry you are having such a tough time.

Hello Ladies, I'm surprised I didn't find this topic previously as it is exactly what I'm looking for since more than a year. My English being so limited, I kept on looking for "skin mets".

When these metastasis were first discovered (2016, 9 months after the end of the treatments for the initial cancer), I was immediately biopsied and told this was a very rare type of mets. The first nodule was extracted and I received a second series of radiations. Unfortunately, already during radiations, new nodules appeared. I had been on hormone therapy (Femara since feb.2016), and moved in 2017 (straight after radiations) to nolvadex. None of the them helped, so I started Aromasin+Affinitor in june 2017. So happy it workedwell ... but only for about 2 months. Same happened with Ibrance+Faslodex a few months later. Followed by Xeloda which didn't help at all. In june this year I started Halaven, which helped drastically ... but stopped working in august. I'm currently on Cisplatin+radiations, but clearly this combo doesn't work at all. My CA15.30 and CEA are both sky high and I see skin mets growing from day to day.

March 2018, a biopsy showed my cancer had evolved to triple-negative (with AKT1 issue). Since then I'm hoping to be able to take part to IMU132 trial. Unfortunately both my mets (skin and bones) do not comply with the RECIST criterias : they are not visible on CT-SCAN nor MRI (which is mandatory to participate to the study). Problem seems to be they are "diffuse", hence "not accurately measurable".

Except for the stress provided by the current quick growth of the marker and the daily sight of skin mets, I do not really suffer from this type of mets and feel blessed major organs are not touched so far.

I hope, wish and pray we all will be able to enjoy life for a very loooooong time. And, who knows, get a drug which will help control the evolution in the skin.

Sending you all lots of love from over the ocean.

Yaëlle