I was dx Jan 2003 with a non palpable 2cm invasive ductal tumour with intermediate grade DCIS, both comedo and cribriform, stage and grade 2. I had a lumpectomy, clear margins,sample node removal (3/8+) then total axillary removal, 1 more node+. 6 x FEC, 25 rads and been on Arimidex for 4 yrs.
This past year or so I have noticed my right breast (where the tumour was) is very swollen, maybe a cup size bigger than the left. The aureola is swollen and lumpy, the nipple crusty. There is about 4" of skin under the aureola that is pink and warm to the touch. We only get 2 yrly mammos after bc in England and my next one is due Jan/Feb 2008. I did point these symptoms out to my bc surgeon last Jan and asked if it could be IBC and he said no. I just don't understand why these symptoms would come some 3 yrs after treatment. As my tumour was non palpable ( dx thru a 3 yrly mammo, when I was 58 yrs) I am concerned that if I do have a recurrence, how will I know when to seek advice?
I am on weekly self injections of 12.5 mg methotrexate for Crohn's, but I don't think these changes are due to the mtx. I have monthly B12 injections and monthly comprehensive blood tests, including liver, renal etc.
There is a possibility that you could be having recurrence of invasive ductal carcinoma. Based on the history , it needs to be ruled out for sure. You need to discuss this with your doctor.
You should get a repeat mamogram, USG and also a blood test for tumour markers done. It would be advisable to get the tests done at the earliest.
If it is an infective condition then you would be prescribed antibiotics for it. If on the other hand it appears suspicious a biopsy would need to be taken to get a confirmed diagnosis.
In case of a recurrence , the further management plan would have to be decided and a mastectomy would be advised most probably.
But that is only after all the other causes have been ruled out.
Hope this helps
My problem seems to be that I never "present correctly", either with Crohn's or breast cancer.
Some 2yrs after bc dx I got Mondor's disease in the breast where the tumour was. I had a long ropey lump above the aureola that got bigger and thicker. When I rang for an urgent appt with my bc nurse I was actually seen in clinic on a Sat morning, quite unusual. The surgeon on duty (not my usual surgeon) sent me for a mammo and ultrasound and said everything was okay. I knew it was not.
About a month later I had my annual review with my own bc surgeon and he took one look - he didn't even need to feel the lump as the problem was apparent, and said I had a superficial thrombophlebitis. I replied, "Is it Mondor's disease?" and he was aghast that I thought I knew what I had. He is the most senior bc surgeon at my hospital, which is a breast care centre of excellence, in his late 50's I guess, and said he has never seen Mondor's in a bc patient, but has seen it otherwise.
He asked if I would let all the radiologists and radiographers on duty to come in and have a look and a feel - no problem.
lhughes - I do not for one second think it is an infection - having had Crohn's for some 37 yrs I know even without taking my temperature, if I have an infection. I do think if it was an infection, it would have slowly gotten worse. I am monitored religiously wth comprehensive blood tests every month for Crohn's, due to taking weekly methotrexate chemo, and if it was an infection, this would have shown up in my white cell count.
I don't know why, but I just feel something is seriously wrong. When I last saw my bc surgeon in Jan 2007 he did a compression mammo, an ultrasound and a core biopsy. I now realise I should have had a punch biopsy to rule out ibc. Hindsight is a great thing. He answered "no" to my query as to ibc but did not elaborate further. My surgeon has never mentioned tumour markers, and I haven't seen my Oncologist since finishing chemo and rads.
Living in England we have a socialised National Health Service, and I cannot even get private medical insurance, having Crohn's and breast cancer. I have no idea when I will be called for my 5 yrly review, but it will be in either Jan or Feb, the dates of dx and surgery. I am just hanging onto the hope that the changes are due to surgery and chemo, but I would have thought that my breast would have changed significantly earlier.
It is interesting that when I was first dx, I was offered either a mastectomy with no rads, or a WLE with rads. I opted for the WLE and rads, and it was only after the WLE and sample node removal that it was found the cancer had spread to my lymph nodes, hence the chemo. I wonder now, if a mastectomy should have been advised, but it wasn't. I knew nothing about bc then, so didn't question the surgeon or Oncologist.
Thank you both sincerely for your responses - I am going to print them out and send them to my bc surgeon and ask his opinion.
Do you get to have an onc review all this during your 5yr review? Can you even get to see one before then? That is assuming the 5yr thing is later than whatever appt can be obtained with an onc.
I didn't think it was an infection, but hope never ceases for some people, me! I just had a small left over stitch get infected and finally puss out, so to speak. Had my mom (a nurse) come check it for three days just to make sure it all came out and was healing. Didn't have a temp, or anything, but a lot of infection there...thought it was a third nipple that was volunteering!!! Can't help but hope for the simple!
So, you stand at another anomoly with your health care. Do you already have a date for your review, or do you get called by a doc? How does that work? Can you call and have them check this area again before then or can you go through a Gen Prac doc? Is there another course of treatment you can try? Just trying to think outside the US's box of medicine here. What would a person normally do if they found a lump before the review date?
I know that from reading your posts that you and I are one for "if you aren't comfortable with the answer...find another answer or person...whatever". So, hound someone! Maybe you can get someone to listen to your concerns. I sure do hope the answer is simple and not something more complicated.
Stupid question here, what is the diff in a core and a punch biopsy?
Wishing you better results in 2008 and comfort in whatever comes your way.
You need to discuss this with an oncologist soon. If this is a recurrence you would need surgical intervention too.
Ask your friends in England, what can be done and how can an early appointment be got. If it does not help ask your physician to arrange for an oncologist to see you.
If not go to the ER of any reputed hospital and ask them to fix you an appointment with an oncologist at the earliest. Just summarise your medical history to your physician, over the phone if it comes to that. He should then be more keen to help you out.
Do let us know how are you doing.
Thank you sincerely for taking the time to reply to me again. I feel so isolated at the moment, and was in tears last night worrying an idc recurrence. I am normally quite resilient, but felt very down.
After your post I wrote a long letter to my bc surgeon, who is the only cancer doctor I have any contact with, outlining my current symptoms, and copying him on my post here and your response.
I have also copied my Oncologist (long gone into the ether!) and my Gastroenterologist. I have recently had an MRI with gandolinium injection for a known stricture in my small intestine, evidenced by an upper endoscopy (still waiting for the results) and my gastro said I am looking at an intestinal resection. I am lucky that after having Crohn's for some 37 yrs, have never had to have a resection (too many crypt abscesses and ulcers, dx PanCrohn's colitis), but am stable now on methotrexate. The stricture, he feels, is due to past inflammation and adhesions and needs surgery before the intestine bursts.
I just feel I can't deal with both issues at the same time, and need to get some definitive answers.
I live in an isolated Fort on Plymouth Sound - miles from anywhere, and it takes some 2 hours oner way by car, ferry and cab to get to the hospital. The next nearest hospital of any repute is some 300 miles away. I just do not have any choice where to be treated, unless we move home, which has occurred to me, but my 79 yrs old husband will not move.
I am hopeful my letter of last evening, with copies to the Oncologist and Gastroenterologist, will bring some urgent action after the Christmas and New Year festivities are over. I have never seen my local GP about either Crohn's or bc, as he once told me that he is not a specialist, and that is why he refers his patients to Consultants at the hospital. He is a waste of time. When I had severe left hip pain 2 yrs ago and was worried it was bc bone mets, he sent to a local community hospital for an x-ray - fine he said. Went back to him and had a 3 month weekly course of physio. No change. A month later I saw my bc surgeon and within 2 days I had a bone scan, which showed osteopenia of both hips, hands and feet most probably due to some 30 yrs of steroids, but the Arimidex certainly doesn't help. My bc surgeon put me on a bisphosphonate, Alendrondric Acid, with Calcichew/VitD tablets and the pain has diminished significantly. So, my Gp is a no-go area. We can only register with one GP, and there is not another one within an hour's travelling time, and they would not take me on due to the distance involved and my health problems.
English socialised medicine is not like it is in the USA and it is difficult to change consultants.
When I saw my first Oncologist, that my bc surgeon referred me to, as I had complications with Crohn's thinking he was the brightest bc Onc at the hospital, he was so arrogant and patronising when I asked him how he would deal with a flare of Crohn's, he said if I continued with my mtx and had FEC chemo concurrently I would die of septicaemia. He got up from his chair and asked if I wished to continue the consultation. I fled the room in tears, much to my husband's embarrassment. My second visit with him was no better, and thereafter I refused to see him. I just told the receptionist in the Oncology suite, before my first chemo infusion, as the protocol is that you must see an Oncologist each time before infusions, I would see anyone else rather than him. There was no discussion, no problem, and within 15 minutes I saw a young female GP who worked one morning a week in the Onc Dept. She sorted me out with a small daily dose of dexamethesaone and prescribed Fortijuice - which I took for 4 months, no solid food. I had total faecal incontinence and only left home to go to the hospital. I could cope with the cancer, but not with the Crohn's.
Sorry to bore you with so much history, but as my gastro said when I first saw him 2 days before being dx with bc,: "you have empirical problems Liz" - didn't understand what he meant, but my very intelligent husband said: "Liz, he is just flying by the seat of his pants and does not know how to treat you.!" Hubby was right , the gastro would not intervene in my chemo treatment, and although I emailed Mayo Clinic, MD Anderson,Johns Hopkins etc. and a specialist IBD hospital in England, no-one had treated a patient with concurrent idc and Crohn's. I nearly cancelled the chemo treatment, but knew because of the lymph node spread, I needed it.
Lisa - as far as I know, a core biopsy is when they put an ultrasound guided needle into the area of the tumour mass and take cell samples.This is what I had when first dx with invasive ductal cancer, although I had no palpable lump. A skin punch biopsy is quite different - the instrument they use is like the one they give with innoculations - it has about 10 probes and takes skin tissue. I believe I should have this a year ago when I first presented with my current symptoms.
I am very hopeful I will get a response from either my bc surgeon or Oncologist in the early New Year.
The only reason I don't ring him or my bc nurse (whom I know is retiring this December) is that he told me a year ago I didn't have ibc. Perhaps now, reading in depth about my ongoing symptoms, he will see me earlier than my 5 yrly review in Jan/Feb.
So many thanks to you both for being there for me. Much appreciated.I'll let you know how I get on.
Do not lose hope. The fact that you are fighting it strongly makes you a commendable person. Also, it is sometimes depressing to have to tackle the medical system along with handling your own illness.
There must be a way, and i hope you come across it soon. But i still think that, if you pursue it strongly enough, a solution will come up.
There is little that can be done until you have a medical support and your doctor is ready to listen to you and explain to you too.
Hope things get better as the new year comes in.
Gosh Dr. B, I wish you were in charge of my bc treatment! I sometimes despair at our socialised medical service, but am grateful it is free of charge at the point of delivery - our income taxes and National Health Insurance is how we pay for it.
I seem to have been fighting the NHS for the 37 yrs I have had Crohn's but have learned the rusty wheel gets the oil. My new gastro of 5 yrs is a brilliant guy, worked in a leper colony in Africa and with HIV/Aids patients in London before deciding on gastroenterology. The problem seems to be that my various doctors don't talk to each other, and I have to end up writing to them. They seem to be overloaded but still have time to do private practice. My husband and I are retired and on a fixed retirement income and cannot afford to go privately. If I went privately, I would be seen within 2/3 days.
I will get it sorted out in the New Year - I think our hospitals close during this period, except for emergencies, and of course, my problem is not. If all fails, I will contact the Patient Advisory Service at the hospital and ask them to intervene. They were very helpful in sorting out a complex medical problem for my husband, and with their intervention, he got an appt with a consultant within 2 days. I just hate to be thought a "trouble-maker", because I am not.
There is a lot of cancer in my immediate family - father died at 59 yrs of colon cancer, twin brother died of brain cancer at age 50, and all of my father's 7 siblings died of different forms of cancer. I just try to be as proactive as I can, but at times it is disheartening until I make a real fuss, as I did with my first Oncologist.
I'll update you if you don't mind, when I get some feedback from the various Consultants. I do value your experience, and time taken to respond to all the poster's valid concerns.
Hi Dr. B.....I went to my GP's surgery this morning for my monthly Crohn's blood tests with the practice nurse. I had her take a look at my right breast.....she said the nipple does retract (?) but she thinks I have lymphoedema of the breast. I have heard of LE in the arms, particularly after axillary resection, but never in the breast. I did have total axillary resection a month after WLE and sample node removal. Could this possibly be why my breast is so swollen, because the lymphatic fluid cannot drain through the axilla? Just a thought that I would appreciate your advice on.
Many thanks for your kind help.
Nipple retraction means that the nipple is drawn inwards rather than pointing out.
You are right that it is usually lymphedema of the arm that is seen especially after axillary resection or radiotherapy but lymphedema of the breast is not commonly heard of.Some swelling could occur in the breast area due to lymphatics present in the breast tissue as well. but this usually occurs within days to weeks after surgery and only in rare cases years after surgery.
You could try some breast exercises or breast massage and also elevation of the arm of that side and see if it helps. A swelling due to lymphedema should possibly decrease due to these measures.
Again, it would be best to try to find and consult a specialist who could do a proper clinical examination.
If you have any doubts, do get back with them.
Hope this helps.
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