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Skin mets

Grannyof3
Grannyof3 Member Posts: 18

Hi all!

I posted this on the Her2 thread but haven't got any responses yet, so I'll try it here.

I just got diagnosed with skin mets. Woohoo! I'm Finding out its pretty uncommon. Tumor markers a few months ago were fine, as was all other blood work. Talked with MO about getting very close to that 5 year, take a breath, calm down a bit milestone. Got a strange rash on my radiated skin that was biopsied.Now 3 months later I'm stage IV. The tumor marker test failed me. I asked my MO what the hell happened? In 3 months I go from cautiously happy to totally devastated. He just shook his head and said sometimes the tumor marker tests aren't accurate. Really? REALLY???

I'm finding very little info on skin mets. Dr. Google scared me more with words like terminal and 6-9 months life expectancy, so I won't be googling anymore.

My ct scan was clear , so no organ involvement. Waiting on bone scan and mri results. Hopefully they're clear as well. Will start chemo soon. Uggg

Is there anyone else out there with skin mets? I'll take any info I can get.

Thank you!!

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Comments

  • Grannyof3
    Grannyof3 Member Posts: 18
    edited July 2016

    Anyone

  • steelrose
    steelrose Member Posts: 318
    edited July 2016

    Grannyof3,

    I'm six and a half years into my stage iv diagnosis, and have had skin mets on and off. Don't believe the stats! Skin mets won't kill you, and can be treated with radiation. They do tend to pop up in other areas though. In my case, they've been great indicators as to whether a treatment is working or not. After a few months on Ibrance/Aromasin, my skin mets completely disappeared!

    Wishing you the very best...

    Rose.

  • stagefree
    stagefree Member Posts: 360
    edited July 2016

    hi grannyof3

    Ive had skin mets at the beginning which dissapeared with chemo.. Not dead 😆:))) Dr Google gets confused most of the times.. BCO is a better reference for all the info you're looking for.

    MO has never impled any concern about my skinmets theoughout the 4,5 years of my treatment and I agree with Rose that they are in fact a visual reference to whta's going on..

    Hope they disseapear very soon with your new treatment. No worries, there are a handful of good therapies to keep you alive with good QOL. Hang on!

    Hugs

    Ebru

  • Grannyof3
    Grannyof3 Member Posts: 18
    edited July 2016

    Rose and Ebru,

    Thank you so much for responding. I've been so terrified. I asked my MO my prognoses and he just said that they'll be treating it now as a chronic disease. A lot of reassurance that was. I'm so sorry you ladies are dealing with this but I'm grateful you're here to help others. I'm assuming there aren't too many of us with skin mets out there?

    Big hugs to you both!


  • steelrose
    steelrose Member Posts: 318
    edited July 2016

    Grannyof3,

    I've come across a few ladies here with skin mets, but not many. My MO gave me the "chronic disease" talk in 2010, and that's exactly what it's become. I know how scary it is, but have faith. I hate that you were so close to that 5 year mark... I was diagnosed at stage iv so I don't know that feeling. But I'm still here, Ebru's still here, and I hope and pray you will be around for many years to come!!!!

    Happy 4th of July and (((hugs))) to you...

    Rose

  • shutterbug73
    shutterbug73 Member Posts: 284
    edited July 2016

    Welcome Grannyof3. Sorry you are here but glad you found us. I do not have experience with skin mets, but I did have the privilege of meeting Kelly Lange of Metavivor shortly after I was diagnosed. She is HER2+ and was dx with skin mets back in 2007. She has been on Herceptin ever since and the skin mets disappeared and have not come back. Here is a link to her story

    http://metathriving.com/wordpress/october-21-inter...

    Hopefully you will have a good response as well. Hugs!


  • bestbird
    bestbird Member Posts: 232
    edited July 2016

    I am sorry to hear you are dealing with skin mets, which is not all that uncommon. I would strongly suggest that yu consider getting them biopsied, as the skin mets may have a different ER, PR and/or HER2 profile than mets elsewhere.

    Below from my MBC Guide is a list of possible therapies which I hope may be helpful for discussing with your doctor.You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

    As described below, therapies for skin metastasis may include:

    • Cryotherapy
    • ElectroChemoTherapy (ECT)
    • Imiquimod Cream
    • Laser Ablation
    • Medihoney
    • Miltex (Miltefosine)
    • Other:
      • Laser Ablation
      • Radiofrequency Ablation
      • Radiotherapy
      • Systemic therapy
      • Surgery
    • A new treatment called ElectroChemoTherapy (ECT) has been proposed as a complementary therapeutic technique for controlling cutaneous and subcutaneous metastasis.ECT is a non-thermal tumor ablation therapy providing electric currents (electric pulses) to cancer cells.The procedure increases cell membrane permeability, and enhances the penetration of drugs into the cancer cells.Bleomycin, an "antitumor antibiotic" and cisplatin may be the most suitable candidates for the combined use with ECT.In one small observational study, 12 breast cancer patients with skin metastases were given Bleomycin followed by the application of brief electric pulses to the tumor area.There was a Complete Response of 75.3%, a Partial Response in 17%, and no change in 7.7%.No serious ECT-related adverse events were reported.From:http://www.biomedcentral.com/1471-2482/12/S1/S6 For those with ulcerating breast tumors, electrochemotherapy may help control bleeding, pain and discharge, and the treatment can be repeated if needed.
    • Medihoney: At the 2010 Symposium on Advanced Wound Care (SAWC) and the Wound Healing Society (WHS), an international conference drawing clinicians from all over the globe, a clinician presented a series of cases illustrating the benefits of MEDIHONEY® dressings not only in the treatment of fungating tumor wounds but in eliminating their odor and the stigma that goes with it. MEDIHONEY® dressings are a unique line of products whose active ingredient is medical-grade active Leptospermum honey (ALH) that can succeed in alleviating wounds when other treatments have failed.From: http://www.news-medical.net/news/20100417/Honey-beneficial-for-treatment-of-fungating-tumor-wounds.aspx
    • A topical therapy called Miltex (Miltefosine) may be helpful if it is available.In a small study, 25 patients were treated, most of whom had been heavily pre-treated.A response was seen in 9 patients with skin lesions from metastatic breast cancer (1 complete response, 2 partial responses, 6 minor responses) giving a total response rate of 36%, with stable disease in 11 patients (44%) and progressive disease in 5 (20%). From: http://link.springer.com/article/10.1007/s002800051114?LI=true and http://dermnetnz.org/lesions/metastasis.html
    • In some cases, the literature about treating skin metastasis indicates that surgical excision, which might be followed by radiotherapy and/or systemic treatment, may be viable.And when surgical excision is not possible, there may be several therapeutic options such as laser ablation, radiofrequency ablation (which uses a needle that carries an electric current to heat the tumor to destroy it), or radiotherapy.


  • Grannyof3
    Grannyof3 Member Posts: 18
    edited July 2016

    Rose,

    Thanks. I hope we're all around for many, many years to come!!

    Shutterbug,

    Thanks for the link. I remember seeing her post on Facebook. Since 2007. Good for her!


    Bestbird,

    Wow! Thanks for all the info. I've got me some reading to do lol

    Thanks again everyone. I really appreciate it!!

  • Stllivin
    Stllivin Member Posts: 79
    edited July 2016

    Hi All,

    Strange I should find this thread today. I just had two areas on my arm biopsied. I'll know in a few weeks what's up with them. Good to know that this thread exists. Wishing everyone well!

    Suzy (Stllivin)

  • Grannyof3
    Grannyof3 Member Posts: 18
    edited July 2016

    Hi Suzy

    Hoping for negative results for you!

    Big hugs

  • stagefree
    stagefree Member Posts: 360
    edited July 2016

    Glad you already got used to this 'new normal state' of mbc..

    Life does go on, somehow.. Better to enjoy! :))

    Hugs

    Ebru

  • minimoocher
    minimoocher Member Posts: 58
    edited August 2016

    I have inflammatory breast cancer since February 2016. Had neo adjunct chemo, mastectomy on 20th July, due to start radiotherapy but I have been diagnosed with skin mets yesterday so now having staging scans again and await new treatment plan next week. Scary as hell since the cancer is spreading depite the chemo and Herceptin and Perjeta treatment. I feel a bit better having read some of the posts here.

  • dancingdiva
    dancingdiva Member Posts: 317
    edited September 2016

    hi all, I was dx with a recurrence in my lymph nodes in may. Then a biopsy on this this red patch on my boob that's been there for a yr without changing has turned out to be pos. Since the biopsy, my entire breast has turned red. I'm on Ibrance and worried it ain't working.

    Is the breast being pink/ red skin mets? Anybody else experience the spreading or shrinking of redness on Ibrance?

    Any info...

    Thx D

  • Grannyof3
    Grannyof3 Member Posts: 18
    edited September 2016

    mini,

    I totally agree with the scary as hell. I keep worrying that if the herceptin didn't get rid of my cancer the first time around, will it work this time? All we can do is hope for the best.

    Any news on the scans yet?

    Dancing,

    I'm not on Ibrace but started my treatment July 11. My actual rash is looking better but one side of my foob almost looks bruised. It's pinkish/red. That part isn't improving yet.

    We will get through this!

    Big hugs

  • divinemrsm
    divinemrsm Member Posts: 5,993
    edited September 2016

    Can anyone give skin mets information? Is it a rash, or bumps on the skin? Does it itch? How much do they spread, if at all? I don't really want to do a google search, as someone above mentioned, it can get scary.

  • Grannyof3
    Grannyof3 Member Posts: 18
    edited September 2016

    MrsM,

    Mine started out as a dry, almost scaly rash. It itched like crazy. After about a month it started turning red/pink. It had a few small bumps but was more rashy looking then bumpy. (If that makes sense) Mine hasn't had significant spreading, but it did spread a few inches. The entire rash is about 3 x 5 inches.

    I hope this helps.



  • minimoocher
    minimoocher Member Posts: 58
    edited September 2016

    Hi everyone,

    Got good news last week. Both my bone scan and CT scan came back clear. So the extent of recurrence of the cancer is in my skin. My oncologist has described me as a paradox!

    So I started on Kadcyla on Tuesday and and really hoping and praying that it gets the mets under control. They started off as an innocuous looking red rash. Firstly I was given hydrocortisone cream for a week but it didn't make any difference. The mets then turned papular in appearance and very much thickened almost like psoriasis plaques. They have spread from the mastectomy scar to my arm pit which is really annoying as my bra rubs on them and it like chaffing. I got some Urgotul dressings this week which ease the discomfort.

    Wishing you all well

    Mini

  • divinemrsm
    divinemrsm Member Posts: 5,993
    edited September 2016
    Mini, glad to hear of the clear scans, and hope Kadcyla nips the skin mets quickly to where they disappear. Best wishes
  • minimoocher
    minimoocher Member Posts: 58
    edited October 2016

    Doing a bit of Autumnal decorating

    image

  • heidihill
    heidihill Member Posts: 1,856
    edited October 2016

    So pretty! Way to not think about pesky mets. Hope Kadcyla is working for you.


  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited October 2016

    I've had skin mets too. Presented as lumps beneath the skin that gradually grew into the skin & formed scabby tops - sort of like crusty, skin pre-cancers. Several removed by surgery and several more during a big, post-mastectomy radiation blast. Have a largish area of smallish lesions in my chest wall now, they aren't breaking through the skin and forming open sores, since the skin is so fragile and no more radiation or surgery. My friends that have had open, bleeding, gangrenous sores have really suffered. Nearly impossible to dress & treat. Pain control is difficult.

    MILTEX is a topical drug for skin mets that is hard to get in USA, but used in Europe. You may be able to find it or get it from abroad?

    Best, Stephnie

  • pwilmarth
    pwilmarth Member Posts: 138
    edited October 2016

    I thought I would pipe in here.

    There is a rare form of breast cancer that IS skin cancer, but it lands in the breast tissue. It's called squamous cell cancer. The oncologists don't consider this to be skin cancer and treat it as if it is breast cancer. There are some old retrospective studies on this type of cancer that looked at the prognosis for this cancer. The data looked at 15 years of patients, and the endpoint of the study included patients who were just starting to receive Herceptin. I don't think that HER2 testing may have been part of the early diagnostic profile of breast cancer. Some of the women in the study were noted to be HER2+. Today if sqaumous cell cancer in the breast is HER2+, they treat it with anti-HER2 therapy.

    The original biopsy of my tumor came back as squamous cell carcinoma. It was also HER2+. My first PET scan showed small lesions in my liver. I will also add that it was a funginating tumor that eventually broke through the skin with a lot of foul-smelling drainage.

    I have been on Herceptin and Perjeta since February of 2015 and the cancer has been in remission for 16 months.

  • pwilmarth
    pwilmarth Member Posts: 138
    edited October 2016

    DIvine Ms:

    There are three types of skin cancers: Basal cell cancer, Squamous cell cancer and Melanoma. Melanoma used to be one of the worst skin cancers you could get, but they are having good success with many of the new treatments for cancer including immunotherapy.

    Basal cell carcinoma is a type of skin cancer. It is the most common form of cancer in the United States. Most skin cancers are basal cell cancer. Basal cell carcinoma is almost always a slow-growing form of skin cancer. It rarely spreads to other parts of the body. Treatment is important because BCC can grow wide and deep, destroying skin tissue and bone.

    Squamous cell cancer - is the second most common type of skin cancer after the Basal cell cancer. It spreads faster than the basal cell cancer, but is less aggressive than a melanoma in its invasion over the body. It is possible to get SCC on any part of the body, including the inside of the mouth, lips, and genitals. One of the places that squamous cell cancer lands is in the esophagus, and yes, they use Herceptin to treat it. It's also been found in ovarian, prostate, gastric, pancreatic, bladder and certain lung cancers. Again targeted HER2 therapy has been used to treat it.

    Remember that HER stands for Human Epidermal Growth Factor Receptor. The skin is composed of two layers: the Dermis and the Epidermis. I have heard oncologists discuss EGFR ( epidermal growth factor receptor) inhibitors, and the effectiveness of anti-HER 2 therapy depends on its ability to work on other cancers beside breast cancer. The other organs I listed have linings called endothelial cells and they function like the epidermis of the skin.

    Not all HER2+ breast cancer is squamous cell cancer, but probably all squamous cell cancer in the breast is HER2+

    Skin metastasis occurs when cancerous cells break away from the primary tumour and make their way to the skin through the blood circulation or lymphatic system. Most malignant tumours can produce skin metastasis, but some are more likely to do so than others. When the following cancers have metastasised, they have quite a high chance of affecting the skin.

    • Melanoma – 45% chance of developing skin metastasis (but only 15 to 20% of melanomas metastasise, so the overall chance of a skin metastasis is about 7-10%)
    • Breast cancer – 30%
    • Nasal sinus cancers – 20%
    • Cancer of the larynx – 16%
    • Cancer of the oral cavity – 12%


  • Joan44info
    Joan44info Member Posts: 4
    edited March 2018

    Hi Rose, hipe you are doing well. i read in your post that after a few months on Ibrance/aromasin your skin mets completely disappeared. I have alot of skin mets and just started ibrance with extemastane. It seems that the skin is not improving so far. I also have bone mets now. Please contact me.


  • amarantha
    amarantha Member Posts: 330
    edited March 2018

    Joan, I would ask to have new biopsies to see if your cancer is still estrogen sensitive.

  • amarantha
    amarantha Member Posts: 330
    edited March 2018

    Dear Divine Mrs M., I have skin mets. The skin involvement was always present from the original diagnosis of Inflammatory Breast Cancer. After initial treatment, and mastectomy, a rash grew slowly into the mastectomy scar. It was red and itchy. Afinitor calmed that, calmed the itching, turned the redness tan-coloured, but after a few months the rash was moving again, red, with tiny little bumps and nodes, covered the entire area of the former breast, moved below the bra-line, and across under the right breast, and bone mets and extensive lymph node involvement also cropped up. We move to Ibrance/Faslodex, which could do nothing for the skin, as we found out, since cancerous cells in the skin were no longer estrogen-sensitive. We moved to Halaven (eribulen - chemo) - it is having some success with the old rash, and is calming the lymph involvement. However the rash has moved to colonise new areas, has colonised the skin of the right breast, and has now gone inside. The right breast is now presenting pretty much as the original cancer did in the left breast, when it was IBC. Biopsies/diagnosis/new treatment will happen in ten days. There is an IBC ressearch web page which shows pictures of skin mets symptoms that are not too different from how mine looks .

  • SierraPineapple
    SierraPineapple Member Posts: 20
    edited November 2018
    Hi, I also have skin mets and was wondering how big of an area did yours cover? Mine is over my entire right breast. Red, itchy, swollen, and too many nodules to keep track of. It’s very sexy. I’ve heard of skin grafting for skin mets. My MO also said she may approve a double mastectomy, but I don’t think they can remove all of my breast skin...it’s so hard to find information.

    Hope everyone is doing well
  • amarantha
    amarantha Member Posts: 330
    edited December 2018

    IH Sierra Pinea, I am sorry to hear you have to worry also about skin mets. Mine cover pretty much my whole chest by now, going also under the arms, going up towards the neck and down the belly. A skin graft was discussed for me but we decided against it. I have now had two mastectomies. Currently Halaven (eribulen) seems to gradually be working on the skin mets (slowly). Keep posting here, I like having a skin mets thread.

  • LoriCA
    LoriCA Member Posts: 671
    edited December 2018

    Round 2 with skin mets for me. Like Amarantha I also have IBC. Taxol cleared up the skin completely the first time - even though 75% of my breast had fungated by the time I started chemo (talk about your worst nightmare, it just kept growing every day), within 5 months of starting Taxol I had all new unblemished pretty skin that looked as if nothing had ever happened.

    Didn't last long though - about two months after completing chemo I noticed skin changes again, just some blotchy red areas at first. Breast MRI didn't show anything concerning given my history so I tried not to worry, but my skin continued to get worse until there was no denying it. Apparently even though Herceptin/Perjeta works well on my mets (liver has completed resolved and skeleton continues to show healing) and new biopsies confirmed it is still HER2+, the skin changes were an early sign of a full-blown recurrence of IBC which quickly once again involved the breast, chest wall, skin and now lymph nodes throughout my body (oddly enough, the ones in the axilla don't show any sign of metabolic activity). It's spreading fast again, and after consults everyone agreed that systemic treatment is the only way to go and that we'd try Taxol again in hopes that I have the same response I had the first time. Hoping it starts working soon because pain level has gone from an annoying 3-4 to a solid 7 just over the past two weeks and I'm trying to convince myself it's just tumor flare.


  • SierraPineapple
    SierraPineapple Member Posts: 20
    edited December 2018
    Thank you for sharing Amarantha. Skin mets suck I’m so sorry to hear yours cover so much. I hope you don’t mind me asking why you decided against the skin graft? I asked my MO about it and she said my only my option was chemo or to try radiation again on that area if the RO even thinks it is on. And I will definitely keep up on here. I feel like there is so little out there discussing BC skin mets.


    Lori I feel you on the pain. I have to take pain killers just to sleep. Mine isn’t IBC but I see changes daily and have been photo documenting it. I think the skin involvement is worse because you not only know the cancer is there, you feel that it is there every minute , but now you see your body being consumed by it daily. I’m hoping your treatment works soon. What options did your MO give you to treat it?