Skin mets - IMPORTANT new info

StephN · 08-17-2007, 03:27 PM

Dear Group -
Here is one more thing that most of us pay little attention to as we have enough else!

I was under the probably mistaken impression that skin mets goes along usually with inflammatory BC.

A good friend just informed me that she now has skin mets. Her original dx was INSITU. She has pretty severe lymphedema in one arm and has to wrap it. She said that at night there was one area on her upper arm that was a little painful and noticed a very small bump that was getting a little higher, but was very small at less than 1/8th inch. And the color was not much darker than her normal skin. She showed it to her doctor as she was being cautious about having anything done on her lymphedema arm. She was sent on to the dermatologist who removed it and then wanted more tissue.

It was determined to be BREAST cancer in her skin. She was dx'd in 1995 and has fought mets, but was told to be NED lately. Her tumor markers were all very good and nothing on last PET. They have gone back and taken a lot more skin and don't have a clean margin so she now needs radiation on her arm.

I went back and found a note from SandyH (who fought her skin mets on chest for over 5 years) from last spring when she was being restaged after Tykerb. Her quote:

"Nothing ever shows on the tumor markers because its not in the organs. I will ask about the HER2 serum but doubt if that is an option but always good to ask. My lung is full again so that means another draw tomorrow before having the port moved if I even have the port done tomorrow."

The message for us is that if the darn cancer wants to grow it will find a way - and a very sneaky one at that. My friend's skin mets does not look like the rashy appearance that we have had our members describe their skin mets. She had only the one little "pimple" on the surface with the rest in a wide area.

Now she is trying to find out if it is HER2 positive like some of her mets have been before. The last ones were negative so she has been off Herceptin for over a year.

Lolly · 08-17-2007, 04:14 PM

Steph, your friend's problem sounds exactly like my recent skin met in r.chest which was excised and found to be, like my original breast cancer, er/pr- her2+. My surgeon did get clean margins but at follow-up today there are several more "bumps" showing up in the chest area so I'm probably looking at more surgery as it seems my recently radiated chest skin doesn't have adequate blood circulation to enable systemic treatment to reach these tumors.
My new saying is that this d*#%! stuff is like rust, it never sleeps!

<3 Lolly

StephN · 08-17-2007, 10:43 PM

to learn that you have skin mets, Lolly. Somehow I have missed that or you have not posted about it. I hope the Abraxane and Tykereb will put a stop to more outbreak.

Is there anything you are doing topically? Like the Miltex that Sandy fought so hard to get.

Take care my friend.

SoCalGal · 08-18-2007, 01:56 AM

Lolly,
I had skin mets and finally had them removed with another latisimus dorsi flap procedure to get clear margins. I wore temp skin for a week while waiting for the path on clear margins, then they went back in and closed me up. Mine were over my left "breast" area and looked like a bumpy rash which occured after 2 rounds of a/c so I could first be bald and then find out it wasn't working. Anyhow that was in 2003 and I haven't had any skin mets since.

Kim in CA · 08-18-2007, 09:01 AM

Lolly,

I am really sorry to hear you are dealing with this. Hope you can get those bumps under control soon. I know you must be feeling battle weary at the thought of another procedure. Just know I'm thinking of you.

Love, Kim

Lolly · 08-23-2007, 02:38 PM

Thanks girls, appreciate the kind thoughts and advice.

My mets are not the "rashy" kind, but small tumors under the skin that can be felt as hard bumps which start out about the size of a peppercorn.

I can't remember if I mentioned these when I posted about my recurring recurrence and chemo changes this spring, but when I eventually started Tykerb/Abraxane these areas melted away, yeah! But then I noticed a new one, which actually looked like a mole which got enlarged and crusty. This was what was excised in late July.

These "new" bumps appear to be a recurrence of the earlier ones, plus a couple of friends.

I see my onc next week, probably be scheduling re-staging scans and planning strategy.

<3 Lolly

Mary Anne in TX · 08-23-2007, 03:30 PM

are the bumps like little knots under the skin? I have a couple on my right arm (side of mastectomy and node removal). They have gotten smaller, but have not gone away. I noticed them first about 6 plus months ago. Both my onc and rad onc felt them and did not seem concerned! I assumed they had something to do with the lymph fluid. ma

Carolyns · 08-23-2007, 04:28 PM

Hi,

I am a mets girl and I too had skin mets. They appeared shortly after I was diagnosed with mets elsewhere. The bc skin mets were on my right arm and looked like small reddish bumps similar to what Lolly describes. I thought it was where my dog had put his paw on me and there were about 4 spots (size of a peppercorn each) just under the surface and slightly raised. My oncologist said that it would be VERY rare to find this as bc. In my case, I was headed to the skin doctor for another matter and my oncologist suggested that I have a biopsy...it came back as breast cancer.

During that time I was just starting treatment with Femara for other mets and the bumps (bc skin mets) went away within 3 weeks (that was about 1 1/2 years ago).

I think this is something to be aware of but according to my doctor it is pretty rare

sdhaem · 08-29-2007, 04:23 PM

I finished radiation, on no treatment now... I had no problem except a couple of days ago my left breast (lumpectomy AC TH and 33 radiation) the skin is burning feeling. not hot to touch,, with a red mottled rash... not raised just burny feeling.. left breast and up into my chest area..what do you think.. any ideas Thanks Sandy

Lolly · 08-29-2007, 09:21 PM

Mary Anne, the "bumps" did start out feeling like peppercorns just under the skin, like Carolyns describes, but mine are on my chest. I haven't had reconstruction so they're easy to find.

Sdhaem, I think your rash sounds suspicious, better get it checked out by your onc. A skin biopsy is the best way to know for sure if there's any doubt. Keep us posted.

<3 Lolly

Sherryg683 · 08-29-2007, 10:00 PM

Sdhaem, the red burning rash is how my shingles started. I didn't have the blistery stuff, just patchy rash. It was very painful though and feverish..sherry

Mary Anne in TX · 08-30-2007, 05:57 AM

Thanks so much Lolly. I've have them checked at next appointment! ma

Believe51 · 03-24-2008, 12:37 PM

Just bumping this up since there has been alot of talk about skin mets, maybe this can help someone>>Believe51

hutchibk · 03-24-2008, 03:27 PM

Thanks Marie for bumping this up. I too assumed skin mets were only related to IBC... until last month when I had some dry, red, itchy, stinging spots on my back between my shoulder blades. I asked my doc about skin mets being only related to inflammatory and he said no - and sent me to a dermo to have it assessed. He hadn't seen it, but based on my description thought it would be wise to go to the dermo. My doc thought it was probably exzema, which is what it turned out to be, thank goodness...

But now it's good to know to stay vigilant about our skin, too!

kcherub · 03-24-2008, 06:35 PM

I have a skin question...skin mets can have so many different looks, right? And shingles...don't they usually start on the trunk? I have some rash on my legs, and did have it on my abdomen, but my ONC. said it was just a rash. It did/does itch. It went away on my trunk, but is still there on my legs. Both of them, like when you use a new soap. I do not think that I have skin mets (for once, believe it or not), but I wonder if it could be Herceptin related? Any ideas on my multi-focal question?

Take care,
Krista

Jean · 03-24-2008, 07:01 PM

Lolly,
I am sorry you are dealing with the skin mets and I hope and pray that your treatment will banish them...

I have a dumb question...those bumps, did they grow or remain the same in size? Just curious....

Thanks,
Kind Regards,
Jean

RobinP · 03-31-2008, 04:45 AM

To all those with skin mets, I am sorry. It sounds like something that you may mistaken for something benign or a rash. Thanks for sharing so others are more aware of this. Found this photo link that looks like the bumps of skin mets you folks are writing about...

http://www.ibcsupport.org/pictures/skinmets.html

schoolteacher · 03-31-2008, 05:28 AM

Flori,

I also got skin mets after two AC treatments, so the doctor started me on Taxol/Herceptin and they disappeared. It was amazing to watch what the Taxol/Herceptin combo did to the mets. I had the treatment on Thursday, and one of the mets came to the top of the skin and disappeared by Saturday afternoon. There does not appear to be any skin mets left. When they do my mastectamy, this area will be removed.

Amelia

Amelia

ElaineM · 06-22-2008, 08:54 PM

Yes. It is possible to have skin mets. I had some about 6 years ago. They looked like little bumps on my chest. I went to my dermatologist who removed them with minor, non invasive surgery. The pathology report stated that they were in breast tissue. Women can have breast tissue where there are no breasts. I was lucky. The other women who had them, but did not choose to have them removed experienced mets in other places like the lungs, abdomen, ovaries, other areas of the skin, face and the throat. I had them removed before they caused mets. I ask the dermatologist to give me a skin check up every year. So far, so good !!

08-25-2008, 07:00 PM

I just
completed 4 rounds T/C after a lumpectomy for a possible chest wall
recurrence (or new primary) after a mastectomy done in 1999 for stage
II bc followed by A/C and five years tamoxifen.
About an inch and
a half above the lumpectomy scar, I have a very small (about an eighth
of an inch by an eighth) circular, pinkish, raised area. It's only been
there a day or two, but is weeping clear fluid. I'm scared to death
that this is the beginning of skin mets.
Anyone else have a similar experience? Anyone able to describe skin mets in its earliest stages?

Thanks so much. I teach and school starts tomorrow. I will call the
doc, but the wondering is killing me..................Any help with a
description or experience. As always, thanks so so much for any
information
Patrice

5/98 age 38:left breast IDC stage 2, 1 pos node mastectomy w/reconstruction,4X A/C,5 yrs tamoxifen
4/08:left chest wall recurrence grade2/3, lumpectomy, 4X T/C
future:radiation,rt mastectomy,reconstruction, oopherectomy,tamox or A