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Breast cancer on the skin

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

Looking for those who have had this suppossedly rare condition of brest cancer metatizing to the skin.  I have cancer on the skin of my breast.  Nobody seems to  know how to treat the  sores that developed.  I am taking Xeloda and so far the cancer is only superficial to the skin.  There is no organ involvement,not clear as to where my future lies.  Anybody out there know what I am going through?

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

The product Miltex out of Germany which you can only obtain if your oncologist ask the FDA to get it for compassionate usage.  I had a good friend who had skin mets on the scar lines of both mastectomies.  It is a cream and she  had wonderful results with this Miltex.  Hard to get.  She had done radiation to the area but it came back, so the cream really worked wonders for her.

After a few application it just went a way.  

I had and often have inverse psoriasis and after a year of trying everything I found a a prescription cream that got rid of the autoimmune condition in 4 days.  What I used isn't for skin mets but inverse psoriasis.

I think there is someone here that is dealing with skin mets.  

Best wishes,

Doris

 

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

Thank you for information.  I will talk to my oncologist and see what he says.  I hope that whoever is dealing with skin mets would contact me or if anyone knows who it might be so I can hopefully make contact with them.  I am feeling very alone about this as so far I have not had much help or enthusiasm about treatments for the skin aspect of the disease.  I am going finally, and with much prodding by myself and my hubby, to  a wound care specialist.  We are praying that he might hhave some answers.  "I don't know" is getting very old and very discouraging.  Again, thanks for the info it is greatly appreciated.  Cathy

mangobbxx
Posts: 2
Joined: Apr 2013

Hi I am writing to you because my mother has breast cancer with metastatic lesions to the skin.  I know she has also taken Xeloda in the past too.  i really cant offer you a solution as to how to heal those lesions but i just wanted to let you know that i do know what you are going through.  it can be scary because they open and sometimes can leak fluid.  the important thing is to keep the wounds cleansed with a sterile saline solution (which does not hurt) and keep them covered with some type of gauze bandage so they do not get infected.  i dont know if this works or not because my mom never tried it, but ive read that the raw diet helps your body heal the lesions.  my mom was not into trying that type of approach, though.  anyway, i just wanted to let you know that i know what you are experiencing. best wishes to you!

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

thank you for your response. What you described is what I am experiencing.  I am seeing a wound specialist next Monday so hopefully they can give me some ideas.  Question for you if you don't mind?  Was this a chronic condition or was it something that spread as the disease progresssed? I a really scared because I feel like these sores are going to take over and my breast is going to fall off. I know that sounds silly but I am completely in the dark so I don't know what to expect.  Thank you for your advice and for your support.  It is good to know that I am not the only one this happened to.  Bless you.

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

First of al, I am not a any type of health care person.  I have been on boards since 1997 when the internet came into usage.  I knew the lady I mentioned in my post and a friend of mine, cousin had skin mets.  My friend's was on her mastectomy scar l but her cancer had already spread on her skull, ribs and pleura before it was found on the scars of her mastectomy.  My friend's cousin, had her skin lesions on her arm, so I think in her case it would be considered a distant organ and mets.  

If you have cancer that is in the same area of your breast is is still call localized.  If you are stage 2 then you would remain stage 2 and it would not be considered what we call on these boards stage IV.  Stage IV on these kind of boards means that the breast cancer cells are in other organs beside the breast area. 

The other poster gave you good advise in keeping it clean.  Please see an oncologist on this one besides the wound specialist.  It needs to seriously be treated before it spreads.  I know we fear the worst, but a treatment plan is such a relief in helping our worse fears be manageable.

Please keeps us posted.

Doris

 

 

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

I am not by any means a computer whiz so it took me over an hour the other night to find info about Miltex.  It is made by a company called ASTA Medica based in Germany.  That info was found through business websites and databases.  All of the info I have received is coming off of discussion boards and support groups.  Apparantly it is not somethig that the Cancer medical community is promoting.  I have found support group discussiions and stories of cancer mets patients using this product back as far as 2005.  Crips, that is almost 10 years why are we not hearing about it or making it available to cancer patients here if it seems to work as well as I am hearing it is? when you hear about all the research, money and time that is spent looking for a cure you wonder if they realy want to find one.  If we cured cancer, diabetes,  heart disease, high blood pressure think of all the jobs and money that would disappear!!! I am not new to cancer and its politics. My Dad had end stage esophogeal cancer and they scared him so bad about the type of death he would have without chemo he decided to do it.  The chemo and radiation killed him anyway and he had to live his last 3 months going to radiation everyday or getting some type of treatment to offset the effects of chemo. He spent the last 10 days of his life in the hospital with a chest tube and they were still giving him radiation until 2 days before he died?  WHY?  $$$$$$$ That's why! I not tryng to be pessimistic just realistic.  I think it is up to us survivors to let these researchers and the FDA know that the time for fighting over accolades and money are over.WE NEED A CURE NOW FOR ALL CANCERs NOW!  Thanks so very much for the advice and help.  I am optimistic and strong and in this for as long as I can have quality of life.  Take care and keep me up to date if you hear anything else.  Bless you a 1000 times. Cathy K 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Kamcat,

What did the wound specialist have to say?

This is from another site but the woman does have skin mets and posted something after I posted about usiing Voltaren Gel for Femara's joint pain.

In much higher concentrations, the active medication in Voltaren has been used for skin cancer. I found that Voltaren gel helped minimize skin mets. Its anti-inflammatory effects are also good for skin mets. Worth a try if you have skin mets. Christine

Here is whre I saw the post and you can put skin mets in the search engine.  Since this is a mets forum only, many women have skin mets.  http://csn.cancer.org/comment/reply/257075/1354915

Keep us updated,

Doris

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

thank you for your response. What you described is what I am experiencing.  I am seeing a wound specialist next Monday so hopefully they can give me some ideas.  Question for you if you don't mind?  Was this a chronic condition or was it something that spread as the disease progresssed? I am really scared because I feel like these sores are going to take over and my breast is going to fall off. I know that sounds silly but I am completely in the dark so I don't know what to expect.  Thank you for your advice and for your support.  It is good to know that I am not the only one this happened to.  Bless you.

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

Keep us posted  ..  Hoping you find relief on your chronic condition. 

Gentle hugs,

Vicki Sam

camul's picture
camul
Posts: 2039
Joined: Dec 2010

with bone and skin mets in 2010.  They did a pet that showed the bone mets and when the onco was telling me that I needed a biopsy to make sure that the bone tumors were mets, I had him feel some skin lumps on my back and arm.  They biopsied one of them on my back and it came back IDC, as did the bones.  I have not had any problems with the skin tumors.  They are small (like a lima bean).

Wish we all knew what our future has in store for us, but I am learning that even the doctors have no idea as we all react so differently.

 

Carol

kamcat1962's picture
kamcat1962
Posts: 40
Joined: Mar 2013

I have learned alot since my last post.  i did see the wound specialist and he was very helpful as well as a very nice person.  They are determined to get me the Miltex however i can only use it under the supervision of my oncologist.  It seems that when I was first diagnosed(Aug '08) my tissue tests came back as TN.  Now my lymph node biopsies from June 2012, same area ,came back HER2 positive.  My oncologist even had it tested again. (Apparently I am a mutant LOL) So he started me on Herceptin and the cancer metastized to my skin. Then i got on the real chemo merry-go-round. After radiation it was Xeloda for 3 months, just further mets to skin.  So now he put me back on Abraxin and Avastin to see what happens.  He is going to do this for 2 months and hopefully, God willing we will see some regression.  After that he will let me use the Miltex if the skin mets are still so discomforting.  He wants to try a new drug they just approved but his concern is that it is combined with Herceptin and that didn't work for me. He is also apprehensive about the Miltex because he wants to make sure that the chemo is working and the only way he can tell now is from the skin mets.  So I guess I won't be using it unless everything else fails.  So far as we know everything is still superficial and the radiation zapped the lymph nodes really well.  I guess until I get another PET or MRI or if the skin mets continues to spread I won't know what lies ahead.  I take it a day at a time and hope for the best.  My mother-in-law (who is a saint, my BFF and more like my own mother to me than to my husband) has been praying to every saint she knows plus I think she has God and Jesus on speed dial.  She is so sure I will get well.  I pray for the same thing.  As thsy say "Miracles happen every day"  I hope they are right.

Blessings  to all ,

Cathy K

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

 

I hope this inspires you as it has me... You sound like your a strong determind women...  

Keep Up The Fight!... God Bless!... Kathy

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

I love it.  It does seem that when you do put one foot in front of the other, you eventually go somewhere.  

Thank you for posting it.

 

Doris

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Thank you Cathy for letting us know.  I've been thinking about you.  I do hope there will be that miracle for you.

All good thoughts,

Doris

cincopez
Posts: 1
Joined: Jan 2014

Hello! I am new to this site. I also have skin mets and I don't know what to do about it. It doesn't make sense to me. I thought if it was on the skin it was skin cancer, but they tell me it's my breast cancer showing on my skin. ARGH. I am looking for others who can give advice. I saw your plea for the same and since it was back in the Spring, maybe now YOU can help me? :( I had a lumpectomy of my stage one not at all agressive lump back in fall of 2011. Then skin mets showed up on my scar line immediately, but it wasn't diagnosed until the following spring. We thought it was just a lump of fat on the scar or something. After a while many other pimple looking pink bumps appeared all over that breast and were multiplying fast, so I panicked and had a biopsy, which they determined it to be skin mets and gave me a stage 3 label. i did chemo and watched the bumps mostly disappear! Then I had a single mascecotmy Nov. of 2012. I had reconstruction spring of 2013. Fall of 2013 I noticed a red spot on my reconstruction breast and some small pink spots around my scar line. UGH. I stalled on biopsy hoping they'd go away. But then I did the biopsy right before Xmas and they called yesterday to tell me it's skin mets again. UGH. I am headed back to the oncologist this week to discuss options. I feel like I will always be looking over my shoulder watching for spots to turn up. I don't want to do surgeries every time....this is so frustrating. ADVICE? :) Ruth

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

I don't know much about skin mets, but I have had bone, lung and liver metastases and I know that, when the breast cancer spreads to the lungs, it is not lung cancer.  It is breast cancer in your lungs.  Ditto with my bones and liver.  They have biopsied my bones and liver (couldn't get to lung lesion because of where it is) and they are definitely breast carcinoma.

When it spread to my right lung, the pulmonologists were watching the lung and knew it was abnormal, but no one called it cancer until the ribs on the same side were biopsied and breast cancer.  I asked pulmonologist #3 what kind of lung cancer would remain basically unchanged in my lung for 4 years (that's how long it took to get my mets diagnosis).  He told me that it was not lung cancer and that many types of breast cancer will mets to the lung and not grow quickly because it is not their ideal growing place (a simplification of what he said...lol).

My liver was a different story - I went overnight from clear PET scan to 231 liver lesions (who counted those...lol).  My onc nurses tell me breast cancer loves the bones and liver.  My bone mets was fairly slow spreading but my liver mets was nuts.

Hopefully your skin mets, with cancer treatment, will get better.  I would also ask for a wound management referral t if it is bothering you.  Every hospital has a wound management nurse today and they love to help with skin issues.  They have some amazing ostomy products these days that can be used to cover and assist in drainage problems, etc.  When I was still working as a neonatal NP, we would often consult WM for infant skin problems.   They were amazingly helpful.

Hope some of my chemo brain babbling helps!  Good luck and big hugs!

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