inflammatory bc after invasive ductal
inflammatory bc after invasive ductal Is it possible to get inflammatory bc after ductal invasive? I had all the treatments, WLE. total axillary removal, 6 x FEC chemo and 25 rads.
I have had a very swollen breast for some months now, put it down to rads - but think after 3 years that is a bit implausible.
My breast, where I had the tumour, is very swollen, aureole grossly so, and there are some white lumps that radiate out from the nipple like sparklers. The skin around the nipple has some 180 degrees of redness and has thickened skin. Today I noticed the skin is breaking out, flaking. Rang my bc nurse last Thursday, told to go to the GP, which I did the same day - she was a locum, but said “something is not quite right here, but I don’t know what it is”. I don’t expect a GP to be an expert in bc.She typed out a a fax as I got dressed.
Today my bc nurse rang to say she can’t find the fax - I rang the GP’s office, they say it was sent. Sat here in a wilderness - what do I do next?
Has anyone had ibc after idc? I just thought that doing all my docs advised, I would be okay. Seems not.
Any insight and help is greatly appreciated.
Liz.
Liz- poor you what unnecessary misery to be put through. Ask your GP to refax pronto and hope you get seen smartly. Don’t think much of your breast care nurse- ours would have fixed an appt on your say so without any GP input. Best wishes, dilly
Possible ibc Hi Dilly,
thanks so much for keeping in touch - your concern is deeply appreciated.
To be fair, my bc nurse has always been brilliant in the past - got me in the same day many times, for aspiration, when I had a seroma in my back after axillary removal, and when I got Mondor’s disease, got me into an urgent clinic on a Sat morning.
When I rang her last Thursday she did say she could get me seen by my surgeon quickly, but he would not be able to do any tests - mammo, u/s, biopsy etc., so I would only have to go back to a clinic and as it is a 3 hour round trip by car, ferry and usually a cab the other side of the water, she didn’t want me to have to do two trips. She really is very caring and has always been there for me in the past.
My husband, who obviously is very concerned, asked me to ring the Primrose Breast Care Centre this morning and see if the fax had been rcvd, if not to get a fax number so I could ask the GP to resend it. The receptionist checked and said she had given the fax to my bc nurse this morning, but she was in clinic all day so wasn’t sure when she would get back to me. We had to leave around 2 pm for the same hospital, as my husband was having an MRI scan on his spine, as the neruosurgeon we saw last week strongly suspects spinal canal stenosis.
I don’t know where the delay has occurred but suspect my GP as it took 2 weeks recently for my husband to get a private appt wth a neurosurgeon, whose secty would not give him an appt until they rcvd our GP’s letter. We had to get the GP to fax a copy of his letter.
I left our ansaphone on today but no message from Jacky (the bc nurse) so hope she will contact me in the morning with an appt later this week. Just praying it will not be a Saturday again, as we have a holiday apt here at the Fort, and I have to do the changeover that day. Hubby is great within our home, but the idea to buy the flat was my idea, to give me something to do and focus my attention on something worthwhile. He won’t do the changeover under any circumstances and has said if I am not well enough, to pay a young woman from the local village to do it. I’ll talk to one of the Fort’s cleaners and see if they know anyone that is interested.
I’ve been on to the John Hopkins University bc site in the US where a doctor answers queries and he said my symptoms are “very concerning and need to be looked at asap”, so I am on the case.
I’ll keep you updated if you don’t mind.
Love, Liz.
Liz again! Dilly - just looked at your profile as you are new to me. Do you know how they tell the difference between skin mets and inflammatory breast cancer? What are the different symptoms? The lower half of my r breast , from the nipple downwards, is pink, with all these funny white long streaks going from the nipple to the mid chest. The aureole is very swollen and lumpy to the touch. The nipple skin is crusted, as is the immediate area on the aureole.
A lady on breastcancer.org USA, replied today and said she also has Crohn’s, as I do, and she had invasive ductal cancer some 21 yrs ago at age 32, and last year was dx with bilateral inflammatory bc. She said Crohn’s can affect any area of the body, but I am not sure this is right - although it is an auto-immune disease it usually only affects the gastrointestinal tract, but also the eyes. I have never heard of it affecting the skin. Perhaps I should be seeing my gastro rather than a bc surgeon!
I am sure I will get it sorted soon. I figure if I can cope with Crohn’s for some 34 yrs, I surely can deal with bc. When I saw my gastro in mid Sept he said he wasn’t too happy about my having weekly injections of methotrexate for Crohn’s (which used to be used for bc) in light of my previous cancer. I just don’t get it. How can a chemo drug that was used for bc, cause it? I have a lot to learn, but there again he said he does too, as he called my concurrent health issues “empirical” - I had to look that up in a dictionary when I got home. Think it means he is flying by the seat of his pants and he has no history of anyone with both diseases to go by. Onc said the same thing, and they both made an absolute mess of my treatment during chemo. I ended up on hospital prescribed Frutijuice for 4 months when on FEC as I couldn’t even eat home made soup with the vegs strained out, without immediate explosive diarrhea. I lost 2 stones on chemo, and some 3 yrs later am just putting the weight back on thankfully.
Thanks again for your help.
Liz.
Liz I’ve had four different type skinmets and yours doesn’t sound like any I recognise. Have no experience of IBC and sincerely hope that you haven’t got it. Will be relieved to hear from you when you have seen the breast surgeon. I may be maligning yor BC nurse- in your do area they may make GP referral a condition for seeing surgeon? Ask because speaking to BCN with current worry and getting expert opinion pronto is wonderful for us br ca victims. Hope you get answers VERY soon, dilly
Liz- the Crohn’s bit of your prob: I’ve read that Kefir can help Crohn’s sufferers. It’s a longer lasting and superior relative of yoghurt- good for gut probs all sorts and very easy to make. Would it perhaps help you? It’s worked wonders for my quite different naughty innards,You can buy a “seed” and instructions online- just a thought, dilly
Crohn’s prob misplaced- chemo brain, senile dementia grovel- dilly
IBC? Hi Dilly,
just heard from bc nurse - got an appt with a bc surgeon (not my regular one) in clinic next Wed. Not sure I want to see him as I saw him once at an urgent Sat morning clinic when he said there was nothing wrong with my breast - when I next had my annual check up with my own surgeon he dx Mondor’s - it was so rare he asked if I would mind having the radiologist and radiographers come have a look and a poke. Hopefully this guy, a South African, will have a better knowledge of IBC.
Hubby seeing neurologist next Monday evg for results of last night’s MRI scan - it very much looks like surgery, so hope I am okay. thankfully, he has decided to go privately at the local Nuffield hospital, as then he can have the neurosurgeon recommended by the cardiologist. He is very worried at his age, about getting MRSA or C-difficile and the Nuffield is much cleaner, and quieter.
We do normally have to get a referral from our GP to see a consultant, but I have never been asked before to get one for bc. Perhaps the rules have changed. Just glad it is going to be sorted out, as the pink area is swelling by the day and covers half of the breast now.
Thanks again for your concern.
Liz.
Liz very glad you’ve got a date at last- hope that you and husband get through the horrible waiting OK. Wouldn’t worry too much about hospital infections- my local H is always being pilloried as one of the bad boys but I’ve rocketted through 3 ops without bugs- always take Vit C slow release with me and down pill every 8 hrs to be on safe side! Sorry about the Crohn’s- realised later it WAS you so the try Kefir bit not misplaced- maybe googling it would give you time off the waiting worries!.Best wishes, dilly
Update … Hi Dilly,
I went to the breast care clinic Wed and was throughly checked out. Saw a new bc surgeon, young, Scottish female, very communicative. I had a mammo, ultrasound and biopsy. Mammo and u/s showed nothing, which I expected. Results of biopsy in 2 weeks. The surgeon and Consultant Radiologist, who did another u/s after the radiographer had finished, both said it is possibly due to the rx. I find this difficult to understand, as I had no burning or peeling, and apart from the Mondor’s disease, have had no problem in the intervening 3 years. Just got to hope the biopsy shows no cancer, and that they are correct in their assumptions.
Thanks for your caring.
Liz.
lizziecee saw onc Tues and asked about my half pink, bigger, surviving boob. He’s thorough and careful- decided it WAS lymph accuumulating and unenthusiastic about mammo- says they are now doing them less often [haven’t had one for 15+months].expect this is NHS pressure based rather than pt need. So hope that you too have lymph acc rather than nastier.
RT does damage so can have all sorts unwelcome results- but NA to my B as refused RT to that side due to lung damage resulting from RT on other- like you no burning/peeling.
Sorry you’re still in Limbo- the waiting game is awful- and hope your news is good when you get it at last, dilly
Lymph accumulation? Hi Dilly - gosh isn’t this site just a great font of knowledge? - it is awesome. Wish I had found it when I first got bc as I only really learned about bc here. I didn’t even know I was entilted to get a copy of my path reports until I read it here. I didn’t understand them, and my surgeon nor Onc certainly didn’t go through them with me. Only found out from the path report that I had DCIS, cribriform and comedo as well as the invasive ductal tumour. that was the start of my problems with my first Onc - he said DCIS was not cancer - I begged to differ as I did Latin at school and translated DCIS to be a cancer in the ducts in place! Some of the ladies on here (and men - don’t want to get into a sexist problems with our male friends!) are so knowledgeable, articulate and always ready to help.
My experience has been that my Doctors seem to tell you diddlly squat, and the first Onc I had, with a chip on his shoulder bigger than McDonalds, was offensive, arrogant and patronising about my Crohn’s. He had never seen a patient with concurrent bc and Crohn’s, nor had my gastro incidentally, and when I asked the Onc how we would deal with a Crohn’s flare he said: “Well. we’ll have to deal with that if it happens”. I walked out twice from my consultations with him, in floods of tears, and refused chemo until I got another Oncologist., which in the end was no big deal. My gastro said he couldn’t intervene as he told me bc is life threatening (tell me the sun doesn’t rise!) and Crohn’s isn’t, so he had to go along with the arrogant Onc, who would not call peers at the Royal Marsden or Christie’s in Manchester for information. I am sure they must have seen bc patients with Crohn’s - it is called an “orphan disease”, but not unknown.
I proved him right though, that I was so concerned - I did have many problems with Crohn’s when going through chemo, but refused to see him again as my husband was so embarrassed at my crying. I did then get a nice, young, female GP who worked in the Oncology suite one morning a week. Someone was looking down on me that day, for sure. She sorted me out with daily dexamethasone, but I still couldn’t eat any solid food for 4 months. It was a nightmare, of faecal incontinence at home (5 steps to the bathroom) and even happened in the street. One day I went down to our local village, 3 miles away, needed to go urgently to the lavatory, and couldn’t get to the local public toilets and soiled myself, with white pants on. I just sat on a wall and cried. A neighbour at the Fort drove along and asked if I needed help - yes, I did, but my car was in the local car park. I got so I would only venture out for my chemo. Talk about cabin fever!
Guess that is why I am so concerned about a possible ibc dx - it’s not the bc that concerns me, but that if I need further chemo I will have to stop my current weekly injections of methotrexate, as it is a cytotoxic drug and I understand I can’t have other chemo concurrently. I am doing so well with my Crohn’s at present - no pain or diarrhea, like a gift from heaven after 35 years. I am slowly putting on some much needed weight, after losing some 2 stones since I got bc. I am now a healthy 8 stones, and look, and feel so much better now I am absorbing my food. My husband is thrilled with my weight gain now I have some flesh on my ageing bones. I went down to 5 stones (not anorexic or bulimic - had never heard of those ailments in 1970) when first dx with Crohn’s and it has been a see-saw with huge weight loss, followed by the awful effects of steroids. Thank goodness I now have methotrexate, which luckily, I can tolerate.
Apologies for being a bore, just wanted to explain why I am so concerned about another bc dx.
I’ll let you know the results of the biopsy - if it is a telephone call to go back to the bc centre, guess it is bad news. If they write to me, I guess it will say “due to rx”.
Dilly, neither the bc surgeon nor consultant radiologist last week mentioned lymph accumulation to me. I did have a seroma after the total axillary removal,which was aspirated every 2 or 3 days for about a month, and I guess, logically, now I have no lymph glands in the right axilla, that could certainly be the problem. What did your Onc suggest? Some kind of aspiration?
Take care,
love, Liz.
lizziecee had some skin mets excised from B in June so some sort of change in boob likely and not painful or going up like a balloon so not doing anything about it. Had to have aspiration after mastectomy- GP hated doing it because he was terrified of getting an infection in the lymph system and I understood his feelings because I’d read about its effects. Should have had aspiration after axillary section on surviving br side but while everyone shilly shallied and passed the buck the lymph sorted itself!
Thought Royal Marsden was the best place to be with model/perfect oncs! Horrid shock to get a brute when you expect the best.
I had a dreadful onc who was not an onc but a GPSI [general practitioner with specialist iterests- in his case married to a radiotherapist]. After moaning about him in May Mac Nurse suggested tell reception that you refuse to see him at next appt. It worked- but had to go through a what sort of nutter is she patch with next onc until it settled OK. Currently see top chap who is thorough and conscientous but his heart is in RT- he’s done successful trials for improving lung cancer tx. Mustn’t carp- br ca ladies not only pebbles on beach and we do hog the limelight/get the lion’s share of NHS resources.
My complaint about these OK oncs is that they have great difficulty with the unpleasant truth so have to nail them- repeating question until they groan and tell!
Must be hard to have a big extra ill which oncs don’t understand as well as br ca but as I understand it lymphodeoma in br is not all that unusual- do you gently massage am and boob to shift it at bedtime? Hopefully you may not be in line for more chemo tho understand your terrors- 5 stone-it’s off the fright scale!. Best wishes for no horrible biopsy results, dilly
Being recalled… Hi Dilly - wish we had the private message facility, as I hate to bore other folks with my trials and tribulations, but I have found a lot of posts, that weren’t relevant at the time, because I knew zilch about bc when I joined this site, have been a great source of information from “the horse’s mouth”.
I got a call from my bc nurse today, asking me to go and see my original bc surgeon, a brilliant ,if very shy guy., next Thursday. He raised some £500,000 in the local community, to set up the Primrose Breast Care Centre that we have at Derriford Hospital in Plymouth. It is now one of only 6 centres of bc excellence in England, so feel very priviledged that although I live in isolated Cornwall, I do have some of the very best treatment. I did think about selling up down here and buying an apt in London, to be able to get treatment at the Royal Marsden, but my husband wouldn’t agree to the move. Outside of the RM and Christie’s I guess I am getting good treatment.
The real problem is the concurrence of Crohn’s with chemo for bc, as I am already injecting chemo each week for Crohn’s. Neither my gastro nor Onc have treated a patient with both diseases, and I have more clue than them. Onc was arrogant, Gastro is great, but said he can’t intervene in cancer treatment. I figure this leaves me in no-man’s land if I have to have chemo again.
When I had the 3 step procedure last week, the young female bc surgeon said after the biopsy, they would either write to me or ring me to go back within 2 weeks. Has been just over a week. I took this to mean if they wrote, the symptoms are due to rx, and if I was called back, well, who knows? Gosh, it is like wishing your life away, waiting for these results. I feel really well, no problems with my Crohn’s, but if the Onc says I have to stop methotrexate again, I will just go ape! There must be some doctors in England who have dealt with both diseases - I just have to find them! Can I put out an “apb” police alert to find them? Guess I am just clutching at straws once again.
I will sort it out though, if the biopsy shows cancer again.
Hope you are well.
Thanks for caring.
Liz.
Liz hope the waiting isn’t too awful and the results tolerable. My lymph not in squelchy pockets so don’t see how it could be aspirated. Have googled lymphodoema and only found anything about arm- no help.
Apropos of the Crohn’s as well as br ca, have you tried the bcmets forum? bcmets.org/ I searched Crohn’s- not a lot there BUT there are ladies with CD and br ca. They seem to use Prednisone [NICE allowed] - a steroid which causes massive weight gains- don’t know if this is any good to you but the thought of a few extra stone has to interest you! It could be worthwhile for you to register and ask questions as it’s great site for getting answers.Best wishes for waiting time to pass quickly and OK reports, dilly
Update dilly Dilly, I have been on steroids (prednisolone) for some 35 yrs now, since I got Crohn’s in my mid twenties - I got steroid induced psychosis when dx with bc, was almost sectioned as I was way out of control mentally. |My gastro won’t prescribe steroids for me now - I am coping with methotrexate weekly injections and the Crohn’s is under control. Just dreading a finding of bc again, because I will have to discontinue my methotrexate (a chemo drug) and have to wear “adult diapers” again. this time, I will ask for peer reviews at the Royal Marsden. Christies in Manchester and the IBd hospital at St. Marks in Harrow, which is an IBD centre.
I’ll be in touch next week after I see my bc surgeon Thursday.
love. Liz.
Results of biopsy Hi Dilly -
saw my original bc surgeon today - a very shy, but charming gentleman - not like the oiky Onc! The biopsy was thankfully clear.He apologised for not seeing me in clinic 2 weeks ago, but he was not on duty that day.
Well, he said:“let’s have a look at it then” - got my kit off and he prodded and poked, then said, “raise your arms above your head” - he found 4 cysts in my axilla, which he popped with his fingers - boy that hurt. Even showed me the gunge he got out - very gross. I never even look at that area as it is so mangled by the axillary surgery - just pat it dry after a shower.
He is of the opinion that as I had total axilla removal, and he had to be “brutal” to get all the nodes out, that the space is filling up with fluid that can’t get drained away by the lymph glands, because I don’t have any. I still don’t understand why I have these white lumps on the aureloe and surrounding area, but he was not concerned. At the end of the consultation I did ask if it could have been ibc and he looked me straight in the eye and said: “No”. He advised me to use moisturising cream and massage the breast from underneath, towards the armpit, to allow the fluid to drain away. My husband and I feel so relieved tonight, and now we can concentrate on his medical problems.
I did ask about Arimidex - he said I can take it for 5 yrs. I will be seen by him every year, get 2 yrly mammos until 9 yrs post dx, and then 3 yrly. He said the screening process is now available until 70 yrs old, but I can request a mammo from either the breast care centre or my GP after that. I am by the way 62 yrs old. He did also say I can ring the bc centre any time I feel I have a problem, and that is very comforting.
feeling very relieved it is not a recurrence.
thanks for your caring,
love, Liz.
Liz what a relief that must be- I’m really happy for you.
Don’t envy you the cyst popping session- the vet does likewise for cysts on cows’ ovaries - at least yours were done from the outside!
Good luck with the Arimdex- it has had great writeups…
Hope your husband’s neuropathy probs get dealt with as effectively and very soon, best wishes,dilly