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Is it possible to get IBC after IDC?
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.
I would appreciate any insight.
Thank you. Liz.
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.
I would appreciate any insight.
Thank you. Liz.
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.
Lisa
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.
Lisa
I so appreciate your quick responses.
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.
Liz.
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.
Liz.
What did your surgeon say last Jan? Are you sure it isn't just a local infection? Yikes that doesn't sound good. When is your appt this Jan?
Hi,
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
Good luck.
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
Good luck.
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