IBC recurrence

Sulette

Hi all, I were diagnosed in March 2016 with Tripple negative inflammatory breast cancer in my left breast.

Had 6 rounds of red devil chemo and the tumor shrinked by more than half.. had a bi-lateral mastectomy in September 2016 (now 9 weeks ago).. scheduled to start radiation on 23 November 2016. After surgery the histology report confirmed clear margins. I had onle one microscopic cancer cell in 1 lymph node remove so involvement were 1/7.

Now I notice a red inflamed area on/over the left mastectomy scar.. some say it is a skin irritation and some say it is the inflammatory cancer starting again.

Had a biopsy done and waiting for the results, I am also on 10 days antibiotics for if it is only a skin irritation.

Is it possible for the inflammatory cancer to start that quickly again?

Moderators

Hi Sulette-

We're so sorry for the worry you must be experiencing! It's not unusual for healing scars to become irritated, and we hope this is the case here. But it's good you're being proactive and having it thoroughly checked! Please keep us posted on the biopsy results, and we hope it's nothing serious so you can continue on with your treatment!

The Mods

amarantha

Gadzooks, Sulette, I have exactly the same thing, red and thickened skin over the mastectomy scar as well as in the previously unaffected breast. I will be having skin biopsies on Monday. I hope yours is nothing. I have a bad feeling about mine.

minimoocher

Sulette and Amaranta,

I unfortunately have had an IBC recurrence in my skin. I was originally diagnosed in February 2016, had neoadjunct chemo, mastectomy in July. Was due to have radiotherapy but I noticed a spreading rash near the mastectomy scar spreading towards my underarm. Biopsy confirmed it to be a recurrence of the breast cancer.

So my treatment plan was changed. No radiotherapy for the moment and onto a different chemo.. Kadcyla. I have had 4 cycles so far and the rash seems to be responding. Its less weepy, and less red.

I am hoping you get good news about your biopsies but if the news is not as we would like don't hesitate to ask me about skin mets.

Thinking of you

Mini x

sbelizabeth

Minimoocher, I'm so sorry you're dealing with this new development, and hoping the new chemo kicks it to the curb and stomps on it. Gentle hugs.

Sulette

Hi all,

Thank you. Went to my dr to get my results yesterday but were not ready as yet.. will get it in a day or three.

Amarantha good luck on the biopsy.. keep us updated with the results.

Minimoocher - thank you for sharing and will definitely ask when I know have my results and know.

hottmamahouse

I have a question, I'm hoping someone might be able to guide me on.. I was previously diagnosed in 2003 with stage 3b breast cancer 10/15 nodes, ER+/PR+ HER2+. I had a modified radical mastectomy, chemo, radiation, and reconstruction. Last week I noticed swelling and a red patch on the same breast as was affected before. I am scheduled for an MRI on Monday, I'm just wondering if it is IBC, if anyone knows what type of surgical options there are since I've already had the MRM..

amarantha

hottmamahou, I was wondering the same thing. If they've already taken the breast, and it starts up again in the scar, what else is there to cut away ? Let us know what happens on Monday.

Minimoocher, I am really glad to hear they are trying a new chemo drug - and that the skin seems to be responding. I am bit confused about the relationship between IBC and the skin, I know the breast they took in 2014 was inflamed, red, hot, inverted nipple, etc; absolutely all the possible symptoms of IBC, yet there was no cancer found in the actual skin at that time. I understood the swelling and redness was the result of the cancer blocking the lymph system? no ? so the skin can be red, and indicate cancer in the breast without itself being cancerous ?

Sulette, thanks for the good luck, well I will be waiting on pins and needles to hear your result.

Traveltext

Amarantha, you had four positive nodes and a breast tumor, so it would be assumed that your IBC symptoms were just an indication of your bc. It is not necessary to test for cancer in your skin if you already have evident tumors. This is how it was explained to me, and my situation is similar to yours.

amarantha

Actually in the left breast, removed in 2014, no, there was no actual breast "tumour", I just put "more than 6 cm, cause the whole breast was involved, it was you know, cancerous all throughout the breast with lots of little micro foyers, and calcifications, very badly defined, and very little response to the chemo and rads. Also I want to say, when I went for diagnosis in 2013 the left breast was inflamed, red, hot, with a retroverted nipple, and ridges, and itching with nipple pain, but as is typical there was no palpable mass to be found so it was only the biopsy that could prove the presence of cancer. (But not in the skin) (or maybe it was in the skin and that responded to the chemo and radiation ?) There is still so much I do not understand about what happened, and I only half-trusted the oncologist who was young and new. Both the oncologist who treated me and the radiation specialist who designed and supervised the radiation are now gone from the hospital and the region.

sbelizabeth

This is a drawing of the skin and the structures below it. Most of us are familiar with veins (blue) and arteries (red). When they get really tiny and close together they're called capillaries. But there's another system circulating here--it's the lymphatic system (yellow). The lymphatic system drains fluid and other debris from the skin, goes through a series of lymph nodes, and eventually dumps into the chest. It's a complicated set-up, designed to both remove excess fluid and support the immune system.

When breast cancer cells get into the lymphatic vessels of the skin, they can grow and spread quickly. This can happen by itself, with no actual "lump" of breast cancer, or it can happen when a lump of cancer extends into the lymphatic vessels and spreads from there. The lymphatic system of the skin gets clogged with breast cancer cells and is unable to drain the skin, which results in the symptoms of IBC--redness, swelling, heat, ridges, peau d-orange texture. The cancer cells can travel quickly to the lymph nodes in the armpit by the normal flow of lymphatic drainage, which is why IBC moves fast.

Amarantha, I don't know the specifics of how you were diagnosed or what your biopsies found, but this is generally how IBC works. Nasty stuff, but we are overcomers!

amarantha

Very interesting helpful graphic and explanation ! Thank you ever so much sbelizabeth !

Today I had several punctions and skin samples taken from skin and tissue in both sides as well as from a thickened lymph node on the right side. It will take a week before results are available.

hottmamahouse

MRI shows inflammation and cellulitis... the doc put me on an antibiotic and I'm in the process of scheduling a biopsy..

amarantha

HI Hottmamahouse, okay, gotcha. Let us pray that it is something that the antibiotic can dispense with !!!

P.S. I hope the biopsy can be done quickly. Lets stick together on this one !

amarantha

P.S. I hope the biopsy can be done quickly !

Sulette

hi, trust all are well..

I got my biopsy results back:

Microscopical examination shows mainly fibrofatty tissue with two tiny islands of malignant epithelial cells, the largest island consisting of no more than 25 cells.. it is Metastatic ductal carcinoma.. a recurrence of the tripple negative I had it is now just on the mastectomy scar. It is extremely small amount found and should not be hard to get it away.. possible treatment might just be the radiation I were still to go for.. or they can start with chemo again.. operation to remove the involved skin and tissue and then radiation.

Do have an appointment with my oncologist tomorrow to discuss the treatment options.

Thank you all for the support I do appreciate it sooo very much..

amarantha

Dear Sulette, I am sorry that the biopsy shows a recurrence, however on the bright side, it is better to catch it and treat it, than for it to remain nebulous and untreatable. I am so glad they have caught it. I am really glad you shared your results with us. Thank you. I should know something about mine tomorrow hopefully.

Sulette

strongs for tomorrow amarantha and keep us updated please.

Yes getting the results were not nice but at least it were picked up early and they can still do something about it

amarantha

Okay, well the results are here. They found cancer in the biopsies taken on both sides as well as in the right lymph node tested. They are calling it "infiltrating adenocarcinoma" and "lymphangite carcinomateuse". There was no cancer in the actual skin. (edited to say - oncologist says yes there is cancer in the lymph part of the skin) The good news is, it tests positive for estrogen 80 percent in one side, and 90 in the other, and slightly positive for progesterone as well. (edited to say : oncologist says this is misleading, and corresponds to the original cancer, which later on became mostly insensible to estrogen) And have given it a grade II. It appears to be much less ferocious than my original cancer which was inflammatory. (edited to say - Oncologist says this corresponds to the profile of the original cancer, which changed its nature later on) I have a date for a MRI of my head on Wednesday, an appointment with their pyschologist on Friday (thank you thank you for having this service !) and a PET scan in a week. They hope to get me on chemotherapy immediately, we will see what the oncologists at the hospital say. My surgeon is gone to the weekly meeting of all the cancerologists and will go to bat for me to get treated immediately. Crossing fingers. EDITED TO SAY - after meeting with the oncologist - her opinion is this is a return of the original cancer, yes, IBC, no not treatable with chemo, nor with surgery, doing hormone therapy. She says now it has returned, I will be living with it for the rest of my life. Rather discouraging !

amarantha

I hate to dominate and or hijack someone else's thread. Moderators please move my post if it should be elsewhere. I am not sure whether to continue posting here, or to post in "recurrence of breast cancer" forum, or start a new thead, here or start a new thread there, etc. - - I have questions about the treatment options that were offered to me - for this my recurrence. The oncologist decided to put me on aromasine. Actually she sort of put the ball in my court, between chemotherapy and hormonotherapy. I would have preferred to redo chemo, but she convinced me it was unlikely to work, and wanted to try the hormonotherapy as long as for now there is a high showing of estrogen receptors. She said we cannot operate, and that this is going to now be something that I will have to live with for the rest of my (now much shortened ?) life -- I am feeling pretty spooked, terrified, discouraged, and lost. I wish I believed this tiny little aromasine pill had power to put a stop to the onslaught of IBC which is in the lymph system and blood vessels. I have pains in my breasts and under arms, and am imagining the vicious little cancer cells just having a field day. Chemotherapy seemed like a magical cure, I so wished they would try more very different chemotherapy, but it is true if there is very little chance of it being effective it will just weaken me. I guess the plan is to see if this little hormone thing will do the trick before pulling out all the big guns again. Has anyone here been treated with Aromasine has helped for er + IBC recurrence ?

Traveltext

Amarantha, you could put a similar post in "recurrence of breast cancer". That way you'll get extra responses.

amarantha

Thank you Traveltext ! Done

phoenix822

Good Evening, Ladies. Just joined the community today. Interested in all the info given on this thread. Have recently been diagnosed IBC recurrence with possible skin mets and pectoral muscle mass malignancy. Current pathology showed mutation to triple negative. 😰😨😨😨. Haven't had skin biopsy yet and had biopsy of chest wall mass yesterday and waiting for results. Chemo started August 2016 has been ineffective. Currently on THIRD chemo agent (Eribulin) with hopes of success. Scared and frustrated.

amarantha

Dear Phoenix, I am so sorry that you have to deal with this, certainly it is scary and frustrating indeed. Crossing fingers that the Eribulin will do some good. Have they talked about combining chemo and radiation ?