If rash spreads, does this mean cancer spreads?

Sue-T

My rash seems to have spread to in between my breasts. Does this mean cancer is spreading too? Are they able to cut out the skin in between my breasts when surgery is done? Should I ask for this?

Sue-T

Bon, thank you so much.

I met my oncologist March 3 and he offered study. Took it home to read legal stuff, signed up for study on March 4, tissue sent off to Germany for approval to study March 5. March 6 celebrated my 34th birthday. On March 12 I'm to have more tests.. CT scan of pelvis and something else. Only after this test can they (according to the study) do the rest of the tests. I'm promised treatment will begin the week of March 16, but not sure what day. Based on my husband's research it seems treatment is best long term option for me, but of course, that isn't the case if while waiting for it I become stage lV.

That's great to hear that rash spreading doesn't make me stage lV yet, but it seems you got treatment started MUCH earlier. I noticed problems with my nipple area on December 23rd, 2014, mammogram almost a month later, biopsy a week later, results a week after that, then surgery scheduled, but then surgery cancelled, lymph node biopsy again, then results a week later, then referral to oncologist.

I'm getting so antsy to say the least. I also feel itching all over my body (which I'm sure is psychological now) so I'm going nuts feeling itches and not scratching...

Is there a shampoo/conditioner you recommend specifically? Great to know about the Dove.

What is a chemo power port, is it a port so you get treatment through it each time?

Did you have a bilateral mastectomy because you chose to or was it recommended? Did you do reconstruction yourself? Im against doing any reconstruction that may make it difficult to detect cancer the second time. I have heard though that it is possible to take tissue from other parts of the body and reconstruct with it? Do you know about anyone with IBC who has done this?

Thank you so much for responding.

Sue-T

Thanks Bon. I saw my oncologist today and he agreed the skin rash was spreading and that it is possible/likely that that means the skin cancer is spreading. He still thinks that my best odd of ultimate recovery are to wait to go on the study and get the meds he otherwise can't give me here in Canada. If I was in the US I'd already be on them he said .

I'm not to use any creams, but he did say the same thing about Benedryl and I'll buy it if things get bad.

I've had many things booked already (Mug scan, bone scan, abdominal ultrasound, etc.). With this study I now have to do more, and it has to be done in a specific order, which is why it's going slower than I want. Thursday I get 3 CT scans of different parts and a mammogram, and Monday the following week I get a biopsy and a few other tests. Then I hope to start treatment the earliest Tuesday, the latest Thursday (the 19th).

I would rather be healthy and live longer, and if breast reconstruction minimizes that by even a few percentage points then I won't do it either, and will be flat chested.

One more question... did you get your lymph nodes taken out on your left side as well to match more, or were you referring to your left breast? I am definitely thinking it makes sense to do mastectomy on the left side too even though cancer is just on the right...

bride

hi Sue-T,

I was DXed with IBC in the third week of Nov. 2013. I live in a town with a population of 36,000. No doctor had treated a case of IBC in over a decade. By the time I had gotten into an accredited cancer center and gone through a ton of scans (a redo of my path report, MRI, PET scan, cardiac echo, port insertion, etc), it was Dec. 27th before I had my first infusion. I honestly don't think waiting until later this week will make a difference.

I agree with Bon that having a port inserted really will make things much easier down the road. The area around the port will be tender for a little bit. I had my first infusion four days after my port was inserted. I was given some lidocaine cream and a bandage and was told to use it 30 minutes prior to the infusion. The cream worked great but evaporated too quickly. My ONC nurse told me to use Saran Wrap instead. Much better results.

Please don't have lymph nodes removed unless you must. Having a balanced appearance is far less important than the increased risk of lymphedema.

Dove white bar soap is what everyone is told to use and it works well. While you still have hair you may want to use Neutrogena shampoo. I'd skip the conditioners.

My SO was all for me having reconstruction. My RO was opposed to it because the skin expanders would interfere with my radiation. I decided to go flat chested.

No one here can DX you or give you a prognosis. I don't think any of us had the same IBC presentation. And our results have varied quite a bit. But please don't lose hope, one of my masses was measured by ultrasound as being around 9 CMS long. But my post-surgery path report showed NED (no evidence of disease). Dr. Google is not always trustworthy -- much of the information is badly outdated. Try not to get overly reliant on it.

Do keep us posted and ask about anything, rant about anything, or whatever you need. Some of us, like Bon, are long term survivors; some like me, are just finishing my active treatment. But we all have one thing in common, we have IBC and are here to help in any way we can.

Welcome, my new BCO sister.

bride

Sue-T

Thank you Bride... was really great to hear from you. Glad to hear you are NED!

My treatment has been moved to Tuesday this week and I will find out whether I am approved for the clinical trial and if so, what arm of it I get. I'm oddly excited to get things started, and feeling very hopeful.

Susan

Scwilly

Hi Susan - I was dx at the beginning of Nov2013, with triple negative IBC - I had noticed swelling of my left breast, and some itchiness and skin thickening for a few week. i had thought it was a period after a gap of 6 months. I then received a recall letter from the mastectomy I had in the July - originally it had been reported as good but they got my previous scan from my previous provider and compared and found a difference. than goodness as I would have taken ages to go to see a doc about my symptoms. I had another mammogram and ultrasound - but nothing was seen - but I was biopsied because of my symptoms and IBC was dx on Nov 6th 2013. I was very keen to get things started but booked in with oncology two weeks later - my surgeon said they would keep me busy with scans (CT, bone, heart) and I started chemo (4 x fortnightly AC followed by 12 weekly Taxol), three weeks after I was diagnosed.

It is so difficult being diagnosed but you will feel so much better mentally once you have your treatment started. It was a long 9 months for me (chemo, surgery - left umx and radiation). I finished at the end of July 2014. I even managed to go skiing in the middle of my AC chemo - albeit only skiing every other day. Its manageable - with all the drugs that are available for side effects. I never caught an infection and I didn't have any nausea except when I stopped my anti nausea drugs (Zofran) early.

Whilst you'll see from my details below I had some DCIS diagnosed in Feb this year - I am really much more able to take this - and feel so positive. I reeled feel back to my normal self. I'm going to have a right mx and DIEP reconstruction on April 6th (a little earlier than originally planned)

BTW - I had a PICC line - which is an alternative to a port. A port wasn't suggested to me - but I actually felt the PICC was less invasive. It is a pain - you have to cover it in the shower - but I managed well. Its an option if a port isn't what you want or isn't suitable.

Sending you best wishes for your treatment. You will find a lot of support and information on the BCO board.