Treating IBC as 3rd BC recurrence.

Anonymous

Hi all.

I'm wondering if anyone here had treatment when they already had mastectomy/implants and had both chemo and rads on affected breast?

How would they go about helping you?

Different chemo maybe?

Could you have rads again on that breast?

How would surgery help in my case?

Sorry to trouble you. Im posting in not dx/worried right now. The thing is.. Ive almost finished 10 days of antibiotics and not a whit of difference. Still itchy swollen ..pinkish purple rash. Breast feels harder, full and warm. This is the start of week 4 since itching started.Only change I think the drugs have made me sick. Fair to say Im growing concerned. I was prescribed the anti b's at a cancer hospital by specialist. He thought it a likely skin infection. I was hopeful. Now, not so much. Will be going back in a few weeks. They said if drugs didnt help then punch biopsy. I guess they can do that even with silicone implants? Would be so grateful to hear from anyone who has been through treatment with similar history. Thanks.

Anonymous

anyone? Anyone at all ? D D

Anonymous

Hi Astrid,

try not to worry.

you just have to wait for the punch biopsy and take it from there.

Anonymous

thanks for that sub conscious. sometimes i feel i am talking to myself..but you are the calm voice of reason.

(heheheh)

Wildflower2015

Hi Astrid,

My diagnosis was different, so I can't help with advice but I understand how awful it is to wait on a final diagnosis. I think if it was me, I'd push to have that punch biopsy now, rather than wait several weeks. That' would drive mr crazy. They should go ahead and do the biopsy for your peace of mind, if nothing else.

Anonymous

hey there wildflower.

thanks for hearing me.

I thought of pushing for this monday coming clinic, but the specialist had wanted me to wait 3 weeks, in case it is something that 'just disappears' or, responded to the drugs he issued. If I see 'dimpling' or other big changes before then,I will call again.

sbelizabeth

Hello, Astrid. I'm sorry your post got overlooked and no one got back to you!

Have you had a fever with the redness at anytime? Sometimes cellulitis presents with spreading redness and fever.

To answer one of your questions, I believe the answer is yes, you can have a skin punch biopsy with implants. The implants aren't that close to the surface.

My $0.02 worth, and it's just my own opinion, is to insist on the punch biopsy ASAP. There's not much to lose if it's negative, and quite the risk to wait if it's positive.

Anonymous

Thanks for that sbelizabeth. Much appreciated.

I am thinking of doing just that. No fever since this started 5 weeks ago come monday. I believe whatever it is is worsening as it is uncomfortable for me to sleep with the breast in many positions now. Still feels super warm and heavy. Still itchy still discoloured and swollen. I want to push for breast MRI as well. Good to know a biopsy wont puncture the implant. Antibiotics would have cleared cellulitus?

One strange thing..when on the anti b's I didnt feel nauseaus. Now Im finished back to feeling mildly thatway all the time. Not sure why I would be. I truly hope this is a weird viral thing or something exotic.

sbelizabeth

Not sure, but I would think if it were cellulitis you would feel ill and antibiotics would help it reverse directions. I've had cellulitis several times and always had a fever, but no itching. Never hear of IBC causing nausea though.

MargaritaMS

hi Astrid,

I have also had 3 primary diagnoses. My most recent was IBC. My breast swelled and was warm to the touch. I didn't have the so-called classic"orange peel" skin but I did have a thickening of the skin and discomfort when sleeping. When my nipple began to invert itself, I knew I had trouble. I was initially given antibiotics because my doc said "no harm in trying it while we get you on the schedule for mammogram and biopsy etc." which he did within 3 days. However, he also said that if it were an infection, it should respond within 3 days. Unfortunately the antibiotic had no effect. I don't mean to scare you but if you do have IBC then the sooner you get the diagnosis the better. It tends to grow and spread quickly so I would urge our to push for biopsy sooner than 3 weeks. Hopefully it is not IBC though! If it is, there are many treatment options. I don't know about rads because mine was on my opposite side to that which was previously treated so I did have rads and I also did undergo chemo - a different drug combo than I'd previously had. Wish you the best!

Margarita

Anonymous

Thankyou so much Margarita for your kind response. i am so sorry you have had these recurrences.

It seems the IBC brought the worst news for you?

It sounds like you could not have gotten onto treatment any faster than you did though. That is scary.

How long in between each recurrence was it for you?

I have left it too late for this Monday clinic, now. I am thinking of calling though, and asking if I can get a breast MRI before the Monday week appt. My feeling is the specialist will ask to see me 1st. I hope I won't have to get pushy. I did have a complete axilla removal back in 2002..of course there would still be a few nodes there I suppose, but I hope it will help me. will call one of the breast nurses and have a chat on Monday i think. She can then relay what's happening to him, and maybe he will decide to see me in a different clinic or just schedule someone to do the biopsy.

i am feeling a tiny bit terrified, but also the other voice in my head says 'stop making a fuss' it's all going to amount to nothing etc etc! the way you describe how it happened to you is very similar though..except i don't have nipple, but my port scar is hurting so much because it is being stretched with the swelling.

geez..I must stop complaining and pull my self together!! thankyou so much and to the other kind ladies who also responded because you know how I'm feeling right now.

God bless.

Nopoli

Hi Astrid, Thinking of you and hoping for good results. What an ordeal. You've been through so much already. Don't worry about being pushy or complaining. We have to be advocates for ourselves and push for peace of mind.

Hope you're hanging in there. Loved your inner dialogue with your alter ego. Made me sad no one was responding initially but now your quirky sense of humor makes me smile. That's a lovely strength. Hope it will continue to serve you well. Sending positive energy and praying for the best.

Anonymous

Thankyou so much Nopoli for your adorable post. I see you have have been through plenty this year already!! How awful for you. You had almost the same original dx as me but with breasts reversed. I had one node pos. On the left side which was the side with a few IDC tumors. My right was the side with dcis. No lcis(wow..you had both!!) And no pos. Nodes there. They didnt give you chemo? I hope you are doing well now. It is huge journey isnt it.

Nopoli

Hi Astrid, Good observation. I guess we've got kindred cancers or mirror twin boobs--now foobs. LOL. I too have one nipple gone. Did you have Borge removed?

No chemo. They said ILC doesn't respond well to chemo, and they weren't too concerned about the micro-invasion or ITC node on the side of the DCIS/LCIS. No radiation either even though margins on the DCIS/LCIS side were less than 1 mm. Surgeon recommended it but RO didn't, a good part because implants were already in. I was convinced I was being undertreated. Got 3 second opinions after seeing 1 MO and 1 RO, but all within the same geographic area where medical info is shared electronically and all the docs are buddies referring to each other by their nicknames. At the time I was the thinking "group think much?" Well it took a while for for the anxiety to calm down.

Back to you, I hope you can get a CT appointment sooner than the 12th. I'm so sorry you have to go through this yet again! Wow! I admire your strength.will be thinking of you this week.

Take good care.

M

Nurse4u2day

Astrid I was diagnosed with IBC Nov 2013 stage 3c. IBC is extremely aggressive and had I not pushed my doctors to check me for it I would not be here today. It's so rare and with few symptoms and no history they thought I was off my rocker. I only knew about IBC because of a friend.You NEED a Punch Biopsy!

MRI may show thickness but that's usually about it unless you also have a tumor. When they do the punch biopsy it should be done at multiple sites and multiple depths. Please get in ASAP.

I had a friend that was treated for an infection only . Young mother , by the time they realized it was IBC she survived 22 months.

Anonymous

I hear you nurse4u and thankyou.

the message is... don't wait!! :-D

i sent a long email to the BC nurses at the cancer hosp. I expect I will hear back pretty soon. I requested a breast MRI and a punch biopsy so the results are there when I go for the appt on 14th. that way, if..the worst..then I could start chemo, and get a plan formed. and if nothing..well will deal with that too.

heartfelt thanks for walking with me a bit gals. I so appreciate it.

Anonymous

Got in for appt today.. took you advice girls.

Prof. There said he thinks it is breast lymphedema. Never thought of that. I do have bilateral arm lymphedema. I said ok.. but can we please rule out ibc. Can i get a pinch biopsy and mri for breast. He said not yet because the results are so hit and miss. He wants to wait and see if it worsens or not. (Mmm.. I know!! ) however they want an ultra sound for at least a baseline. They also will get me physio to work on lymph decompression but that will take a while to get in. So..u. sound on wed. Then go back on mon. 21st to check results and breast progress. I have to trust them for now. Its hard finding much info on breast lymphedema but one thing I did not find in symptoms was crZy breast itchiness.

NancyHB

Astrid, so sorry you don't have definitive answers yet but it sounds like you're on the right track. I developed LE in my breast only, after my second diagnosis. Had a lumpectomy and second SNB, waited a couple days then went back to running. The next day my breast was swollen, itchy, tender, red, and if I remember correctly it was also warm to the touch. Had a combo of cellulitis and LE. Redness and warmth eventually went away but swelling remained until my UMX this summer (and I now wear an Iron Bra when I run). So it is possible to have LE in your breast alone (I never knew that until it happened to me).

I hope you get the answers you need very soon.

Anonymous

Thankyou so much Nancy. That is good to know. My breast feels full and very warm to me but is not hot to the touch. It is occasionally redish after scratching but mostly this pinkish purple color. Would lymphedema in the breast cause crazy itching for 5 weeks? Hard to find much about it.The reason they seem disinclined to think it is IBC at this stage is actually lack of redness or eedness that is developing.

I want very much to believe them. Im working on it. :-D

Anonymous

My breast is acting like a cute dog.

It comes up with a new trick every few days. Today it is a series of red welts or what looks like bites or something. Other changes are noticeably thickened areas edging into underarm, and again thickening, but in vertical oblong shapes from under breast reaching up to lower half. Not there on right breast. still purply pink..still feels burning and full. still itching or hurting. bra on most of the time now.

thank God my u/sound is today. I know it is maybe the least effective test to discover IBC, but its all they"d give me for now..and I am wondering if they might pick up something in the new thickened areas anyway. I'm still going with their theory of LE in breast, but admittedly..I'm not convinced as yet.

Anonymous

ok, back from U'sound. the doc came in after initial screening was done. he wanted to look himself..and also had a look at my breast and asked a fair few questions. both he and the technician agreed the breast looks swollen and not great. the doc said he sees some evidence of edema on the screen. he asked what other tests I'd had..(none!!) I mentioned I hopefully might get the punch biopsy .They asked me about 5 times when I see the specialist. He said he'd go do the report. i am back home again, with my new spots, and same ol' same ol'. good news is no nasties seen in axilla area or within breast.

possibly things might be moving along a little..hard to be sure.

SSInUK

hey Astrid - I have lymphodema of the breast and have had cellulitis there too (reaction to implant - do you have one?) but - my symptoms were NOT like yours. Please shout push and insist till you get a biopsy - then we'll celebrate with you, hopefully. But you should not be living with those symptoms without full cancer investigation IMHO - even if only for mental stress. And the possible resultof missing something are way too high fur any form of risk.

Anonymous

Hi Ssin.

Thankyou so much for your info.

i do have bi lateral silicone implants since 2011. never a days problem..u'sound shows no leakage or anything. Please can I ask what your breast LE symptoms are/were and how you manage them long term? I have posted in LE thread too, looking for clues. i did try to push at my last appt.. as far as I felt comfortable doing. One insisted that things were improving(iho) despite my insisting they were actually worse as i now needed to sleep with a bra on..pain and discomfort worse. other symptoms pretty much the same. The whole hesitation I believe, (from them) is a lack of inflamed redness, and I hope they are right. I will push again for the punch biopsy. last appt..the specialist i know best was away..he is the one who said we'd do a punch biopsy if antibiotics didn't work. it is so stressful when you feel you will need to convince the cancer docs to investigate more..like you are on trial and have to prove your case.

InStitches

Hello ladies. I have been lurking on the IBC topic for almost two weeks. I really thought everything was fine when I went to see my breast surgeon on Monday of last week. He noted the fact that my left breast was red. I wasn't too concerned because I had noticed an area that was red close to my lumpectomy incision a few days previously and it was not a large area. Then he noted a ridge of thickened skin on the bottom of the breast, but not where the band of my bra hits, but higher up in the breast. I remarked that I had noticed this too and thought it was probably a side effect of radiation. He responded that that was a possibility. He then says I can have a punch biopsy of the skin and it is probably going to come back with no findings. I said, " can we just watch it for a bit." He said sure. Of course at the time I knew nothing about IBC.

When I was getting dressed I looked at the breast and almost the entire breast is pink. Of course this was much more extensive than what I noticed a few days previously. I called my Dr the next day and said tha t I would like to have the punch biopsy. His nurse calls me back and says, he will call in a RX for Bactrim for 10 days and if things aren't better next week to come In for a punch biopsy. I called in Monday morning and had the punch biopsy that afternoon.

I am concerned because he only took one biopsy. I am now concerned about the nipple because it is now flat. He took the biopsy just below the nipple.

Now I am waiting for the pathology results. He did say it could take a week to 10 days. How long did it take to get your results?

I had an MRI in the spring that came out with zero concerns. I also had a diagnostic mmmogram in July which also came back perfect. I am scheduled to have my next mammogram in February. I am surprised he didn't order a mammogram and an ultrasound the day that he observed the red breast.

Of course I am terribly concerned. I feel like I have quite a few of the signs of IBC. Given the seriousness of that concern along with the difficulties of diagnosis, I want to make sure every step is covered. Getting a diagnosis of IBC is not the worst thing that can happen, being told you are fine when you actually have IBC is even worse because you lose preciousness time for treatment.

At this point I am trying to keep my self busy while I wait for results. Of course I check the left breast at least three times a day, hoping and praying to see it has magically returned to normal and that this will all be a very bad dream.

One thing that seems really strange to me is that I had radiation to this breast last year after a diagnosis of DCIS and LCIS. Has anyone else experience IBC in a previously radiated breast? Of course this concerns me greatly because it is my understanding that you can only have radiation to the breast one time.

I am interested in any thoughts or ideas on how to best proceed.

Nancy

Anonymous

I wish you all the best waiting for those biopsy results Nancy. If they come back neg. Then you can get the mammogram and anything else helpful? I hope someone will know about getting radiation twice on a breast. I would like to know that too. It seems you are doing everything right.

InStitches

Thank you Astrid. How are your symptoms doing? Are you seeing any improvement?

I did ask my radiation oncologist last year if I had a recurrence in the left breast could I have radiation again and she told me no. That was last year after I had already started RT.

This is scary stuff.

Nanc

Anonymous

yeah. but we will get through it Nancy.

of course we will! :-)

MinusTwo

Astrid - just wanted to address the implant question I think you mentioned. I also had silicone implants in 2011. I had a recurrence & had to have ALND surgery to remove lymph nodes in 2013. My wonderful BS was able to do the surgery w/o touching the implants or breaking into the capsule.

I ended up with tuncal & breast lymphadema. If you can get to a certified LE therapist, that did me a world of good with inflammation & pain & cording.. Below is a link with more LE information. Good luck.

http://stepup-speakout.org/

eggroll

Astrid, I have breast LE and symptoms can be the same as IBC. It is so frustrating... BUT if you can learn to do your own manual lymph drainage, that might help. And wear tight bras for awhile. Exercise, lose weight, drink lots of water... easy huh? It really annoys me because the physical therapist acts like I'm just fine because her silly measuring equipment only measures my arm. Even more heartburn, it shows that it has less swelling than my normal arm -- even though I can see with my eyes that the elbow area is puffy. The lines are all gone on my inner elbow. Meanwhile the real swelling is in my breast and side. And apparently that isn't important? I hope you get to the bottom of it and let us know. The way I understand it, IBC is your lymph channels getting blocked and lymphedema or vascular blockage can be the same thing... apparently it's my scar tissue blocking and causing the swelling, thickening of the skin, faint pinkness and a little bit of warmth as well. Started 4 days before radiation, and now almost a year later, very little improvement. But at least not getting worse. Too fun. That stepup-speakout.org site is a very good resource. I hope you get good news and soon.

Anonymous

Thankyou so much for the info Minus two.

I hope you are doing well.

Anonymous

wow eggroll,

that completely bites!!

very little change?

ughhh. compression bra and therapy helps?

tell me, did you have maddening itching and discoloration as well? too saw to go without a bra at nite?

yes, I must find definitive answers soon.

I feel for you! I may have stumbled into a much neglected room in the BC mansion.