Skin mets
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NineTwelve - this is why for de novo ladies I think there needs to be a rethink as to first line treatment and consideration for surgery at the start or at the very least less of this handwaving 'oh well its already escaped so... *shrug*. When my primary rewoke and was overcoming Ibrance (which didn't work so hot on the primary anyway), in the words of the radiologist it was 'coming up through the skin'. It too easily could have gone real wrong real fast and its not like I get breast exams at the onc unless I request her to look at something. Skin mets really worry me, though, but there doesn't seem to be a lot of discussion about them at all.
I hope you can get settled in a much better situation, but don't beat yourself up about the past. You have a chance to make it better now.
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Thank you, Sondra! After an evening of self-nurturing, and watching a 1960's melodrama about a dying woman (Stolen Hours - so silly), I am feeling a little better this morning.
It still worries me, often and a lot, that our diagnosis is so poorly understood by even professionals. I feel deeply ashamed of my "cancer breast". It looks like I've been deliberately avoiding treatment. It looks like I won't take a doctor's orders, and that makes me worry that I won't receive the same care outside my oncologist's office.
But I've decided, after reading some physician reviews, to ask for a second opinion at my current cancer center, after the next scan. I chose a female MO, based on an online review from a breast cancer patient who received breast exams at office visits. I have been asking for exams, but have only gotten one or two in the six years I've been with my oncologist. He's a great doctor, but I think we are both uncomfortable with breast exams, and I think it's in my best interest to see someone who has a comfort level with that. He likes looking at scans, not bodies. But the last time I got a scan, the radiologist assumed I had had surgery and dismissed everything he saw on my right breast. I had to call them and demand a revision on the report. It turns out that the placement of tumors in my breast is not good for the kind of scans I've been getting.
I'm also confronting the level at which our culture's systemic misogyny has formed my beliefs. I have an unconscious "idea" that women's time is less valuable than a man's. It is easier for me to ask questions whenever I am seeing a woman provider in a healthcare setting; easier for me to feel like I "deserve" their time. Funny how a physical challenge can lead to emotional and mental adjustments along the way.
This weekend I try to relax and focus on good things. Next week I pick up the phone and try to negotiate the next round.
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I am wondering if anyone here could share how their doctor decided that the current treatment is not working. It seems like it is a very subjective clinical decision....with only a "it seems to be in the same area" or "crusting is a good sign". Meanwhile I am now struggling to find comfortable clothing to wear. My onc seems to be working up the ER drugs(I am ER+) with Xeloda or A/A as next steps. It got worse once I stopped the CDK/letrozole combo. I wonder what anyone else's experience has been.
Like Ninetwelve, I don't feel like skin mets is understood well at all . I don't think that working through the treatment standard of care ladder lines of therapy should apply when many of them may not be as effective in reaching the skin. I suggested some approaches I found in case studies to my doctors and did not have any success. It felt as if I was making those treatment options up. Frustrating!
Ninetwelve- I saw your informative posts in the disability thread. I am sorry that you had to go throught that. I am worried that I will have the same roadblocks too! As for doctors, I had an older male onc who I felt I could ask any question to and he took his time. He always did a breast exam. Sadly for me he retired. I have had a male PA that would never do a breast exam, so I can relate. I have had women oncs that I have not felt comfortable asking any questions to. Made me feel that I could not question their decisions and have plain out told me they were in a hurry after a brief visit that was less than 5 minutes.. My onc does not have to be my friend but I should feel like they at least can listen to what I have to say and give a thorough exam . I hope you found a good doctor by now.
I just stumbled across this thread. I felt quite alone in my diagnosis. There is not much info out there about skin mets and what I do find is not great
I am glad I can learn a bit more here. 0 -
bookgal,
I've never posted on this thread and do not have skin mets, but I immediately related to your description of the female onc whose decisions you couldn't question and her being in a hurry. Having confidence in your MO and having your questions answered thoroughly is so important.
Re subjective clinical decision making.....I'd suggest asking about having a biopsy done, either solid tumor biopsy or better yet a "liquid biopsy" (it's a blood test), for genomic testing to identify any "actionable" mutations and to guide treatment decisions. I'm just recently learning about this myself.
Have you considered seeking a second opinion? There are on-line second opinion programs (Dana Farber has one and also Stanford) that you pay cash for. I sought and got a second opinion from Mayo in Rochester. They handled collecting all my records. I was offered the option of a one hour video appt that turned out well.
weninwi
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@dancingdiva. How are you doing now? Did the xeloda work for you? How are your skin Mets?
I have skin met too. Recurrence with skin mets since June 2022. Progression on Kisqali and Faslodex. Now they are looking at Capcetabine. Any advice? I’m HER2 low. Enhertu is only available, in Canada, through clinical trial right now.
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hi Norvan, sorry for responding so late. Im on off this site. Since the liquid in my pleura tested her2 low they decided to switch me to the first line of treatment for that which was Pertuzumab and Trastuzumab with Taxol. Im tolerating it way better than Xeloda. Xeloda was horrible for me. My fingers and toes and a bit tingly and numbish and sometimes I’m tired but the lethargy of Xeloda is gone and my peeling feet are over. Seems to be doing well. My doc wants me to continue with Per and Tras once Taxol is done.
What have you decided
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Hi all - Looking for advice/suggestions/experience. I was recently diagnosed with skin mets. I've had various spots pop up over the past few months as I've been awaiting access to elacestrant, which I just started in the past week. All of my tumors (bone, liver) have been strongly ER+ in the past, so I figured the skin mets would be a good indicator of how the new med is working. Pathology just came back, and it appears that the skin mets are actually ER/PR negative. *Sigh* I've asked my MO to consider genetic testing for the skin mets. I also have a second opinion scheduled for next week. I'm hoping/thinking that maybe I could get some sort of local treatment for the skin and keep with elacestrant. Any other thoughts? Thanks!
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I had a skin exam in Oct because I have a history of skin cancer (basal cell) and I had been on Afinitor which can lead to skin cancer. I'm off Afinitor (it didn't work - I had progression) and now I'm on Capecitabine (Xeloda). No concerning lesions were seen in Oct, but now I have four - eraser sized, red, raised, itchy spots - upper arm, lower am, upper back/neck. I figured they were related to winter dry skin, and hot showers. But now after reading these latest posts, I'm worried.
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Wen - We seem to be kindred spirits. Hopefully those spots are nothing, but it might be good to get them checked out/biopsied. I was told one of my spots was a dermatofibroma and nothing to worry about in Aug. It morphed into multiple spots by Dec, so I had my MO do a visual check, and she recommended a biopsy. Good thing I asked again. Fingers crossed they are nothing for you - might be just a skin reaction to Xeloda.
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Hello jsniffs,
I just had my scans Monday and saw my MO yesterday. The several new liver lesions are now either stable or have gotten smaller and no new lesions in my chest or bones. So Xeloda is working. But due to hand/foot symptoms my schedule has been changed from 14on/7off to 7on/7off. I didn't have my MO look at the few skin lesions because I wasn't really concerned. No one has ever said anything to me about the risk for skin mets, but I was told Xeloda usually only affects the skin of the fingers and feet. I was feeling pretty good after the visit, but now this.
What do your lesions look like? How many? How big are they? Where are they located - scattered, random areas? I'm very interested in what treatment your MO suggests. How is Elacestrant going so far?
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Wen - That is great news about Xeloda! Stay feeling good about it!! Sorry to get you all worried. Hopefully it is nothing.
The primary skin lesion began as a 6mm hard firm pink nodule (like a big pimple) in the center of my chest (near my sternum). It recently has had smaller little spots around it that look like small zits, and it all started to look quite inflamed. I also had a few other spots on my breast that looked a little different, some more under the skin, some more on top. Each bump/growth seemed to be about 5 mm. At one point they itched/burned a little, but then I put calendula lotion on them, and things seemed to calm down.
I'm very interested in hearing what my MO says as well. I've only connected with my dermatologist thus far. Luckily, I also have a 2nd opinion appt scheduled next week.
Elacestrant has been decent. I finally started a new topic.
Many fingers crossed I can stay on it given this new development.0 -
Hello, all. I hope that those with skin mets are doing better. I thought I would post an update about my condition and the subsequent treatment.
What I called my "skin mets" should more accurately be labeled "fungating tumors." The tumors in my breast which were close to the surface grew until they began to breach the skin. When I finally got a diagnosis of the local cancer progression, I changed oncologists and consulted a radiologist. Five weeks of radiation to the breast resolved my skin wounds, and the breast skin is intact again now. I then went on Enhertu, as I have a low Her-2 status. My most recent scan shows "apparent treatment effect", meaning it looks like the Enhertu has been working to reduce my tumors. The fungating tumors when they first appeared looked like a small red bump, like an insect bite, that did not go away after several weeks. Scratching cause the outer skin to break, and then the wound began to open up and would not close. Radiation killed the tumors and my skin then healed. I urge anyone who finds a similar spot in a place where there are known tumors to get it looked at.
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ninetwelve,
Thank you for sharing - very interesting and glad your radiation treatment was effective. There are so many different ways that MBC can present. My red skin lesions were diagnosed by my dermatologist as inflamed keratosis and actinic keratosis - he thought probably due to cancer treatments affecting the immune system. He treated them with liquid nitrogen.
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I found an eraser sized raised bump that itches on my arm and wasn’t worried. But I’m hearing stories about skin mets so I took a picture and sent it to my dermatologist. I’m probably overreacting but good to check, right?
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My dermatologist is on vacay but I got a message back from her fill in. She made an appointment for me for next week. She said it’s best to check it ou given my history. Glad she’s taking it seriously
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