Apr 16, 2019 08:55PM bevin wrote:
HI, I'm sorry you're worried. I know someone will be by soon who can provide some input.
Meet others concerned about developing a recurrence or metastases.
Posted on: Apr 16, 2019 10:25AM
Can anyone describe what a recurrence in the skin would look like?
I had a mastectomy 11/2018 and exchange surgery 11/2019. My scars looked great up until a few weeks ago. I used to have just a scar that was a straight line and it was getting lighter and lighter over time.
Now it looks like the scar is Y shaped, as there is a line extending from the scar toward the bottom of the "foob" and at the end of it there is small round red spot that feels bit swollen to the touch.
At first I thought it caused by whatever I was wearing, sort of like when you wake up with a pillow crease on your face but then it goes away. But that was almost a month ago and it's never gone away and has gotten a little bigger and slightly redder. I've been careful not to wear anything that would press into my skin or anything, so it's not being caused by my clothing. It's there 24/7.
Thankfully, I have a regular follow up with my MO next week, but I'm just wondering if this is a normal occurrence after mastectomy/exchange or if it might be something I'll have to have checked out with further tests (I'm SO over getting everything tested!)
Would love to hear from anyone who's had a recurrence in the skin about what it looked like.
Posts 1 - 30 (42 total)
Apr 16, 2019 08:55PM bevin wrote:
HI, I'm sorry you're worried. I know someone will be by soon who can provide some input.
Apr 16, 2019 09:32PM pesky904 wrote:
Thanks, Bevin. I’m not super stressed since I’m seeing my onc next week. But even since I wrote this post, the redness has gotten worse and the area under the middle of my scar is really thick and there’s a nodule. Not sure what’s causing it.
Apr 16, 2019 10:11PM KBeee wrote:
Take pictures every day and/or draw around the edges with a sharpie to mark and keep track of the spread.
Apr 17, 2019 10:19AM pesky904 wrote:
Thanks for that tip KBeee. I took pics and today the red spot below the scar is bigger and redder. It’s funny, it’s actually almost where my nipple would be. Pretty soon it’ll be as big as a nipple!
The red spot that is above the scar but almost directly on it is also bigger, but still much smaller than the one below the scar.
Apr 17, 2019 11:03AM pesky904 wrote:
Are there any pics that anyone knows about of what skin mets or a recurrence near the mastectomy scar looks like?
Apr 17, 2019 11:32PM - edited Apr 17, 2019 11:46PM by buttonsmachine
Apr 17, 2019 11:37PM - edited Apr 18, 2019 03:48AM by buttonsmachine
I had some redness in the skin surrounding the scar, and focused red spots/lumps that didn't go away. It wasn't like that before. The lumps were about the size of a lentil under my skin, but softer.
I'm sorry you are in this situation - I hope it's benign. Definitely talk with your MO about it. My recurrence in the skin was confirmed by punch biopsy, which was very easy to do and painless.
Apr 18, 2019 07:23AM pesky904 wrote:
Thank you, buttonsmachine. I have redness in the skin around the scar as well and focused red spots that are very distinguished but so far don’t feel like lumps, though they do feel raised. Also, there is an area under the scar at almost dead center that feels very hard and thick.
Just hard to know what’s normal or not in a reconstructed breast, especially since I also had radiation. But it’s been over a year since radiation, a year and a half since my mastectomy. My exchange surgery was in November and it’s all looked pretty stable since then so it’s hard to tell what this new change is from.
Apr 20, 2019 03:16AM ADDK wrote:
Pesky, I´m sorry that you find yourself in this situation. My skin mets started as a red spot above my mastectomy scar nine months after mastectomy/expander placement surgery, and seven months after finishing radiation. After a while it spread rather quickly, and it took my MO two months to decide to do a punch biopsy. To be safe I think you should go for a punch biopsy, which is a piece of cake as buttonmachine said. I hope it turns out to be just a rash from previous treatments.
Apr 20, 2019 11:14AM pesky904 wrote:
ADDK, that’s what this is, a red spot above the mastectomy line and now one below it. Not raised or scaly. I was hoping at first maybe it was a fungal infection but it doesn’t look like one at all and it hasn’t spread or changed in 2 weeks. There is a spot on the mastectomy line between the two spots that feels extremely thick and firm now.
About how long was it before yours started to spread
Apr 22, 2019 09:22AM pesky904 wrote:
Bumping this. For those with skin mets, did it present as a raised bump? A flat blotchiness? A single red spot or multiple? A rash? On or near mastectomy scar? On or near spot of original tumor?
My area of concern is two red flat blotches near my mastectomy scar and the skin there is very thick and firm. Now the entire bottom half of my breast looks dark/sort of bluish-bruised. There is now a red spot right where my original lump was (there's also a lump there but they assured me in January after an ultrasound and breast MRI that it was "surgical changes" from my November exchange surgery.)
Apr 22, 2019 08:55PM pesky904 wrote:
Ugh. My flat red blotches have now morphed into distinct lumps under the skin. And a third one now, very small directly on the scar.
Apr 23, 2019 05:52PM KBeee wrote:
Hoping your doc addresses it.
Apr 23, 2019 08:17PM buttonsmachine wrote:
What day do you see your MO? Hopefully they can set you up with a punch biopsy.
Apr 23, 2019 08:20PM pesky904 wrote:
I see my MO Friday. Just realized I discovered these spots exactly 2 years to the day that I found my initial tumor.
Apr 24, 2019 10:58AM pesky904 wrote:
Now today they feel less prominently like lumps under the skin. Also lighter in color today. Crazy making, lol.
I would think that's good, as a recurrence or skin met probably wouldn't keep getting better then worse then better then worse, etc.
Apr 26, 2019 02:08PM pesky904 wrote:
No punch biopsy at my appointment today. My MO is sending me for a PET scan. She said it's better to do the PET first because there's a small chance a biopsy could affect the PET results. She also ordered new tumor marker tests even though she says they're not all that helpful. I like that she's very thorough.
My alkaline phosphatase continues to rise. It's funny, no matter how long I go in between tests, it rises 3 points every time. It's now at 174 (normal range 46-136). So it's not astronomically high, but before and all during treatment it was in the 60-80 range and has been climbing steadily since completing active treatment at the end of October.
Apr 26, 2019 03:02PM pesky904 wrote:
PET scan couldn't be scheduled until May 20. That seems so long, but I guess in reality it's only 3 weeks.
Apr 26, 2019 06:00PM buttonsmachine wrote:
It's definitely hard waiting and being in limbo! I'm glad they're ordering a PET scan though. Will they decide whether to do a biopsy after the PET results come in?
Apr 29, 2019 09:12PM pesky904 wrote:
Yes, after the PET she’ll decide. She said there’s a slight chance a biopsy might skew the PET results so that’s why she’s doing the PET first.
My blood work results get uploaded to my patient gateway account. Every blood test result has been uploaded but the tumor markers still haven’t been released. Makes me wonder if something is up with them.
May 2, 2019 08:47AM pesky904 wrote:
Well it’s been almost a full week so I think it’s fairly evident my onc is holding my tumor marker results until she sees me in person.
I called and asked a nurse if they could be released to my patient gateway. She said she would check with the onc but my onc was at the hospital that day doing rounds. I didn’t hear back.
Then I called the next day and got a staff member who told me she’d check. She called me back and said she couldn’t discuss test results with me because she’s not a medical professional. She said she’d have the onc call me.
My blood test results are generally released to the gateway within hours of being resulted. And my oncologist is really good about releasing all of my stuff.
My PET scan is not until the 20th. My guess, just knowing her, is she doesn’t want to worry me when I still have almost 3 weeks until the PET. She’s probably wishing she didn’t order them until closer to the scan
May 2, 2019 02:35PM KBeee wrote:
Go in and pick up a copy. You have a right to your records.
May 5, 2019 04:01AM Casun19 wrote:
sorry if this is late but, I had a recurrence at my mastectomy scar. It was palpable, approximately 1cm and itched a little...but it could have been itchy from the skin trying to heal. felt like a Lima bean or pea under the skin. Almost rubbery. This recurrence never showed up in scans, I had a CT scan with contrast, 3mo later I had a PET/CT, and then an X-ray... I eventually had a punch biopsy and it came back a breast cancer.
May 9, 2019 10:51AM pesky904 wrote:
Thanks for replying, Casun! So yours was a local recurrence, not a skin met?
The thing that I don't like is that it's been well over a month now and it hasn't changed. Sometimes it looks a little less red, but otherwise the size and shape hasn't changed at all. It's not a rash that's spreading. It's not a scaly lesion like eczema or dermatitis. It's not sore or oozing or flaking or itching or anything.
It's just a red spot just above the scar and one just under it, and a thickened area of skin between them that goes over the scar.
I distinctly remember my radiation oncologist telling me what to watch for in terms of recurrence. He said obviously lumps under the scar, etcetera, but his exact words were "look for anything that pops up and doesn't change."
May 9, 2019 09:26PM buttonsmachine wrote:
My understanding is that skin metastasis can be either a local recurrence or a distant recurrence, depending on how far it has gone.
I was told though, that when bc spreads to the skin it can spread further very rapidly.
I hope you get some answers soon.
May 13, 2019 02:23PM pesky904 wrote:
Well, my PET scan is still not for another whole week. At this point, it's been well over a month and there has been no real change to whatever this is, even after the topical ointment my oncologist prescribed.
My feeling is if it were some type of dermatitis, rash or infection, it should be getting better or worse. With or without any type of treatment, a rash would spread, an infection would get worse, whatever. This is two spots and some thickened skin, haven't changed, have never itched, aren't dry or scaly, aren't growing or shrinking.
May 21, 2019 12:02PM pesky904 wrote:
PET scan is over and done with. Nothing lit up in the area of the breast, so now I have to have a biopsy of the skin but my MO sends patients out to a specific dermatologist to do those and my insurance does not cover it. So we have to figure out who is going to do the biopsy.
My left femur lit up on the PET. So no idea what that could be but back on the hamster wheel of more tests now. They are scheduling an MRI to look at it more closely.
May 21, 2019 05:54PM buttonsmachine wrote:
It's hard being in the hamster wheel, for sure. Sometimes it seems like this disease never gives us a break. I'm hoping for good results for you.
May 21, 2019 06:03PM pesky904 wrote:
Thanks, buttons. Can’t imagine what’s on my left femur now that didn’t show up 2 months ago. My oncologist said the report stated it definitely appears to be a bone lesion of some sort, as opposed to what they saw on my right hip that turned out to be inflammation in the adjacent muscle.
May 23, 2019 06:54AM - edited May 23, 2019 06:56AM by KBeee
Sorry you're dealing with more worry. Hoping you get answers quickly...and that they are benign.
One things I have learned is that often doctors prefer a "certain doctor" to refer you to because that is what their office says...because of partnerships, kickbacks, etc. Tell your MO to find another competent dermatologist (I am sure there are many, many, many) which your insurance will cover, and get you an appointment lined up ASAP. Just because your MO "prefers" that person, does not mean that's who you need to use.