IBC lounge: roll call, support and just a good place to hang out
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Hello @hopeful2020 . Sorry you are having to go through more anxiety after having gone through treatment for IDC. Honestly, IBC could start like that, but each of us has been unique in our experience… so there is no "ok, that happened so it is IBC." IBC is a clinical diagnosis based on several factors; some of us had a couple of symptoms, and some of us had many more aggressive symptoms, but we all had IBC.
I did not have IBC following IDC, but I had both at the same time. My experience was that I had a pink "bruise" on top of my breast that did not go away, and did not "turn colors" like a normal bruise. An ultrasound found the previously undiscovered small IDC lump and the tell-tale thickened skin of IBC. I was lucky to be treated at the MD Anderson IBC Clinic in Houston, where the IBC diagnosis took precedence because IBC is the more aggressive cancer.
I am hopeful that you will get a good report and that the issue with your breast is not IBC. I know you are frightened and filled with dread, but please know that IBC is not an automatic death sentence. Treatments have come a long way. I hope you don't have to have any treatment… that would be the best news. When do you expect the MRI results? Please report back and let us know what you find out. Sending you a virtual hug. You will not walk this path alone.
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Thank you so much for responding @lw422. The report is expected in a couple of days. The swelling has been gradual but more pronounced after the last mammogram and ultrasound in Dec. Both the tests showed no abnormal findings and I really thought it was the injury caused by the mammogram. Is the skin thickening all around the breast? Does it feel firm and hard? Mine leaves indents when I press on it. There are no bruises. All along I have been lead to believe it was lymphadema.
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Dear hopeful2020, I am pretty certain that MRI will definitely tell what's going on there, and in most cases results would be negative - there are so many benign conditions that could cause the warmth, swelling or other symptoms that you described, especially after treatments you have been through. I see that your doctors take right actions, and you should know that even in the worst case there are many options to take care of it all, so that you could be healthy and happy. I am sorry about your anxiety though, which is completely understandable. Please, let us know how it all goes, and if you want to ask something, just do it - we are here for you. Hugs,
Saulius
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@bsandra - thank you so much for your kind words. I will let you know once the results are out.
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As Saulius said, it is much more likely to be something else, because IBC is rare. Lymphedema is a strong possibility, particularly since pressing leaves indents on the skin. The areas of thickening can vary with IBC; mine was underneath my breast which was weird to me since the "bruise" was on the top, plus I had not actually noticed it at all. Of course IBC spreads in a web pattern so who knows. I believe one clinical observation for the determination of IBC is that the thickened skin is more than 1/3 of the breast area (hopefully I remember that correctly)… but that in itself is NOT necessarily a positive determination. It is just one of many criteria.
My breast did not feel firm and hard; it remained soft but began to show slight swelling and a little "heat." I was obsessive in checking it and probably caused a lot of the discomfort myself, but I was so terrified and wanted it to go away! My MO said he noted that my nipple was beginning to invert but I never could see that… it looked exactly like the other one to me.
May I ask where you are being treated?
My thoughts are with you, so please post when you need to. I don't come here as often as I did, but I will check on you each day.
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@lw422 -Thank you so much for the support. I got treated at Northwestern Memorial Hospital in Chicago. No sign of that report today either.
Meanwhile no major changes. Breast looks like a balloon. Leaves indent marks. I try and put warm packs and I cant seem to feel the heat. Something is toast. I get the feeling of something crawling sometimes in addition to the stings I get occasionally. The orange peel is more pronounced at the site of lumpectomy and irradiation. This is where the skin is truly thick. Some orange peel at base of breast which was seriously burnt after radiation.
I too am starting to feel if this is a severe case if fibrosis or lymphadema. My physiotherapist who has been performing massages is of the opinion that it might be a seroma. Like some fluid that is just stuck. My oncologist PA and new recruit assistant saw this early Feb - I would have thought they would have noticed if IBC was brewing.
I am just at a loss. If even skin cancer?
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@hopeful2020 - I know the waiting is agony; I hope those results come soon. I'm just so sorry that you have to go through this after all you have already had to endure. Please try not to let your mind "go there" with all the unpleasant possibilities. I hope you can rest tonight and I'll check back tomorrow.
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Dear hopeful2020, crawling and stings are classical feeling in swelled sites (once my arm was very swollen and I felt crawling and stinging). I was thinking of another possibility that my wife had for a long time and it gave us a lot of scare… at the mastectomy scar wounds opened and everything was red and warm around - we thought something was back but punch-biopsy showed nothing (pure scar tissue) and it healed for a long long time:/ Then once occasionally I was browsing through conditions after surgeries and found almost EXACT same images when sutures that had to melt after surgery did not melt and caused swelling, redness, puss and wounds until sutures came out. It happened many months and even years for some women, and for my wife it happened after one year. So, it could be… sutures that were not well consumed by your body. Hugs,
Saulius
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The hospital finally called me. They are highly suspicious of inflammatory breast cancer. They want me to do a biopsy. There is some skin involvement. Some area of nonmass enhancement of 12.1 cm looks suspicious. I am thinking why bother with the biopsy - just get the whole breast removed. So disappointed. Will let you know as things progress.
What is the course of treatment? How does treatment go for IBC? Can I have surgery and then chemo? She said she doesn't see any node involvement and no spread anywhere but maybe to the muscle behind. Can this be cured at all?
Update: my onc called me and said not to jump to conclusions yet as it is a non mass enhancement and so can be inflammation, infection or cancer. Not sure if that is to make me feel better but let's see. If cancer maybe Lobular or IBC or both (I am not sure why they couldn't see this on the ultrasound in Dec). But first step is to get that biopsy scheduled I guess. Then if cancer, proceed with body scans and bone scans. Then based on what I prefer mastectomy and then chemo. Thanks no radiation as I was already radiated there.
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Hi @hopeful2020,
We're sorry to hear that you are in this situation. We have two articles that go into the treatments available for IBC that may be helpful for you to look at, in the event it is IBC.
It can be difficult to be in this waiting stage. You may experience some relief through guided meditation or other sources of distraction. Remind yourself that for the time being, until the biopsy is completed, there's no action that you can take as your medical team does not have all of the information they need to know the best course for treatment yet. Belleruth Naparstek is a social worker who has some free online guided meditations that you may find helpful. We have shared a short one in case it might be helpful to you.
Please keep us up-to-date with any news. We're holding you in our thoughts. ❤️
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Thank you so much @moderators - I truly appreciate your support and guidance. I will look through the resources.
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@hopeful2020 — so sorry to hear of the hospital report, but it sounds like your doctor isn't convinced. I hope they will make a determination soon. Typically IBC treatment needs to begin as soon as possible. The Standard of Care is chemo, surgery (mastectomy and ALND), then radiation. Please do not agree to surgery before chemo; that is not standard for IBC. If there is an IBC specialist at your hospital, please try to get in to see them ASAP.
Treatment is harsh but do-able, but hopefully they will find that it is not IBC. Hang in there.
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Uhh, hopeful2020, sorry for the news but, as your doctors say, let's not jump to conclusions. Punch biopsy and a quick answer would be preferable. And then, depending on results - quickly fix the situation. If it all is contained in the breast, time is important, as lw422 said. Hugs and keep us updated,
Saulius
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@lw422 @bsandra - Thank you for your support. Onc also said IBC is rare so could be ILC as well. Why do you not recommend surgery before chemo? I am not sure how things can get to 12.1 cm and I am not having any other symptoms. I have an appt with my onc on Wed and breast surgeon on Thurs. How soon should we move if IBC? Why are treatments harsh?
I am also planning on asking for some antibiotics today just in case there maybe an infection.
Was your MRI also showing non mass enhancements? I guess that seems to be the key here - no mass.
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I am not recommending chemo before surgery; that is the NCI Standard of Care for IBC. Here's some information from the NCI.
Treatment is harsh because it is usually an entire year marathon of chemotherapy, surgical intervention, and maximum radiation. Since you have had rads previously I'm not sure what that will mean if you do have IBC.
My scans showed the distinctive webbing of IBC; I did have a small tumor but it was IDC.
As Saulius said, chances are very good that you do not have IBC. I know you are anxious about the diagnosis but try not to obsess. I hope the antibiotic will solve the problem! I'm kind of surprised that they hadn't already offered one if an infection is suspected.
Hope you can have a relaxing weekend.
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@lw422 - They called from surgeon office. I asked about antibiotics and they said that was a reasonable ask so that we can cover all bases. So I will try that. Also agreed for ibuprofen - so will try that and see if this swelling can come down. They said nothing definite but they see some enhancement on the pec muscle as well. Again no masses so I am hoping to God that this all goes away as it came. If recurrence they will try and do chemo first. I suppose they want to shrink before mastectomy. They don't want a skin punch biopsy as irradiated breast might not heal I guess.
I am also wondering if my fall down the stairs caused this.
I do understand the one year treatment. I went through it in 2020-2021. If Her2, I suppose treatments are there and there is a new drug.
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@hopeful2020 — I'm keeping my fingers crossed that the antibiotics will help resolve this for you. You mentioned the call from your surgeon's office, but have you seen a regular oncologist for evaluation?
And no biggie about the skin punch biopsy; it's just one more data point. I had two of them and there was "no evidence of carcinoma" in either sample. I was bewildered because that made no difference in my diagnosis.
Take care and have a nice weekend. Here's hoping that antibiotic will work its magic!
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@lw422 - after 800 mg of ibuprofen and 875 mg of antibiotic last night, this morning felt better. Breast was still hard when I woke up but not warm to touch. I massaged a bit and it's started back again. So I think I have learnt now what seems to cause the swelling and pinching sensation. Going to leave it alone. Maybe whatever I has has been aggravated by the lymphadema massage sessions. And I am also starting to wonder if this is try IBC. As the fact that they said there may be some enhancement on the pectoral muscle really worries me.
I got an appointment with the regular Onc for Wed. But she did call me immediately end of day after she saw the MRI results the PA got from the surgeon's office and was the one emphasizing on the non mass enhancement and to wait and see.
The radiation oncologist asked me about antibiotics when I went to see her and said sometimes there is some kind of a memory response it triggers of radiation? I am not sure what that is about. I couldn't remember at that time but when I went back and checked my records I did have antibiotics end of Oct for strep throat and then the breast started swelling and had to go and see Surgeon early Dec. I have a note out to her to see what she says. Have you heard anything like this?
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@hopeful2020 — I'm glad you noticed a little improvement today; that's great news. I believe the radiation issue is called "radiation recall" and it happens to some people. Here is some info from NIH… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3227903/
You might google "radiation recall symptoms" and see what you think.
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@lw422 - Thanks. Read the article. Not thinking that's a possibility. My chemotherapy was before radiation although I did have trastuzab (herceptin) for a while there after radiation 2021. I have the same antibiotics prescribed now that I had in Oct last year. This all started after mammogram in Dec.
My curiosity is more on how irradiated breasts show up on MRI. How much of what they are seeing could be related to cancer and not cancer. Did a lot of reading on MRI and so much conflicting information. It did say IBC can have pec muscle involvement which is why I am concerned now. Otherwise many benign conditions show up like this. Have you come across anyone who have had IBC on recurrence and not the first time?
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@hopeful2020 — I can't think of anyone who has had an IBC recurrence though I'm sure it happens. I'd like to suggest that you search this IBC section of the forum and read as many posts as you can. There's plenty of discussion of the different symptoms and outcomes right in this thread. It will keep your mind occupied for a while and hopefully answer a lot of your questions (plus some you didn't know you had!)
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@lw422 - the MRI report finally came in. If I didn’t have the science background or have had cancer earlier, that report would send anyone to the hospital right away due to intense scare and stress. It says there is a non mass enhancement of 12 x 10 x 11 cm that is highly suggestive of malignancy. There is some enhancement on pectoralis major but extensive breast edema seen. But no lymphadeopathy of nodes or enhancement outside the breast. I think now that the fall down my stairs at home together with the lymphadema therapy and drainage may have a role to play in this finding. I didn’t think much but I might have injured myself when I had that fall in Jan after which this swelling got worse. Last time I had cancer, a mass of 4.3 cm found a way into my nodes. Something that huge of an enhancement across my breast now must surely cause some fatigue and other symptoms in me I think. Well, the biopsy will tell.
The fall came to my mind as they asked about it in the MRI questionnaire. I suppose they didn’t follow up on it. Also it says the compared the results to previous breast examinations. Not sure if that means they looked at my test results or just going by what the doctor wrote after my breast exam. All this is making my head spin. I will rest for now and wait for the biopsy to be done next week. I will bring it up to my onc on Wed and the breast surgeon on Thur. If they still think it’s malignant, so be it. Will just have to schedule next steps!
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Dear hopeful2020, one thing that I know is that inflammation looks similar to IBC on MRI, and knowing that many of radiologists do not meet IBC that often, they might not distinguish them, if in some cases they are at all distinguishable. Reaction to antibiotics and ibupfofen gives us strange clues - when my wife had IBC, she took ibuprofen and antibiotics and there was absolutely no reaction. I am strongly here going for a quick punch skin biopsy (my Sandra had it done several times and these were just very very small shallow holes in the skin that healed in a week) - it would answer all the questions. IBC can move rather quickly for some and slower for others. I'd say panic is not needed but you should get biopsy this week and answers next week. Usually if it is IBC, you can see it moving on visually. We used a simple marker to mark edges (just dots, not line) of visual changes, and it helped us to see what happens and how fast it happened. Hugs,
Saulius
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Thank you Saulius. Really appreciate you responding. The ibuprofen seems to work, antibiotics is being hard on my tummy. I need to stop ibuprofen tomorrow due to biopsy next week.
When I was getting treated for lymphadema, they gave me this foam sheet to place on my breast for compression that left indent marks and it would make my breast quite red with the markings. I suppose there may have been a slight redness that remained when I went to the surgeon. Now that I don’t use those anymore, there isn’t any discoloration. Being brown and having darker skin - it was subtle but could make out. By marking are you referring to any rash or discoloration that would keep growing?
Yesterday went out for a nice walk around the lake and the swelling softened a bit. Was able to destress with the water, sunset and nice wind. Felt one with nature after a long time! If I can get this to go away, I might be fine. Biopsy is scheduled for next Monday and we will know what the truth is next week.
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@hopeful2020 — I agree, the MRI results sound a little scary but hopefully the biopsy will bring good news. Is this the skin punch biopsy or are they trying to biopsy the mass? At any rate, you are still playing that awful waiting game and I hate that for you. It's great that a relaxing walk helped with the swelling. What day is the biopsy scheduled?
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@lw422 - there is no mass to biopsy. It’s all non mass enhancement. So I guess they are just going to biopsy the area? No skin biopsy as far as I know but will check again. Biopsy scheduled for Monday, 18th.
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Dear hopeful2020, yes, I meant marking the rash or reddish areas to see if they increase, 'cause with IBC they most probably are likely to increase… Hey, all the best with the biopsy. Please keep us posted. Hugs, Saulius
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@lw422 @bsandra - I don’t have a rash to track.
Saw the oncologist today. What a breath of fresh air after all that I have heard from various folks who looked at my MRI who had me convinced it was cancer. She said it could very likely be due to the fall. The biopsy will guide our treatment whether or not cancer. I can live with that for sure. She also thought it was rather unusual for something of 12.1 cm non mass enhancement crop up without a reason. So I have some hope and will relax till Monday 🙂 She is going ask for a skin biopsy.
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Dear hopeful2020 - it is really great you found a way to calm yourself down, which in many cases is the most difficult thing. Yay for skin biopsy - answers are just few days away! Please keep us posted, Saulius
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@bsandra - they are going to wait on skin biopsy. If MRI finding is benign, they might do one. Hope by this time next week, we would have resolved the mystery.
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