What to do next?

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pammyjean
pammyjean Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)
What to do next?
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  • pammyjean
    pammyjean Member Posts: 5
    edited October 2013


    I am 49 year old Registered Nurse who had a partial hysterectomy 5 years ago. I had a mammogram in May which didn't reveal anything other than to say I have "dense" breast tissue. A couple weeks ago I started with lower abdominal cramping, bilateral breast tenderness and heaviness (like I was getting my period). I have not had these symptoms since my surgery so I thought that was really odd, so odd so I made an appointment to get in with a gynecologist (my appointment isn't until the end of the month). One night, my husband came behind me, reached around and cupped my left breast with his hand which was so suddenly painful I cried out, pulled away, hitting his hand off me. I figured it was some kind of menopausey thing but a couple days ago I noticed that my left breast had now become larger, heavier, warm and much more painful. I nursed all three of my kids and even though my last one weaned 21 years ago, I remember the feeling of blocked milk ducts and that's what this felt like. Yesterday, the pain became so bad that it was actually making me nauseous and I had to take Ibuprofen for it which only minimally gave any relief. There is redness and streaking on my skin from the areola edge on out a couple inches and inside my breast feels pretty hard and is incredibly tender and hot to touch. The pain is achy or throbbing but at times I feel a pinching sensation in my nipple area but it also feels tingly. I have been putting hot compresses on it which seems to make it feel better, but last night I decided to soak in a hot tub. When I got out and was drying myself and looking at my breast I realized that part of my nipple had flattened which is on the side where the red, inflamed area is located. The texture of my areola skin in this area looks odd to me also, some dimples and raised areas have formed. My right breast is also still tender to palpation and heavier than usual, but is in no way comparable to the left breast.


    My family doctor was not available today but I got in to see her PA who is sending me for a diagnostic mammogram and ultrasound of my left breast this afternoon. The PA also wanted to give me a Rocephin antibiotic injection which I declined but I agreed to take an oral antibiotic. She also drew a CBC, wanting to check my white blood cells for evidence of infection.She feels this is an infection and I hope she's right but I'm not so sure.


    I live in a rural area about 7 hours away from University of Michigan's breast center and I was wondering if I should wait to see what all this turns up or should I just make plans to go there now? I already called and they said it takes 1-2 weeks to get an appointment and I don't want to waste time, considering that if it is IBC every day seems to matter.


    Obviously, I am petrified right now and want to make sure I don't have this beast within me but at the same time concerned that they won't be experienced enough here to find something that's hiding.


    Thank you for any advice,


    Pam

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  • alicki
    alicki Member Posts: 661
    edited October 2013


    Hello,


    I also had a partial hysterectomy but 3 years ago and am experiencing breast issues (however, I have been through a lot of testing and all seems clear but one breast is still larger than the other and lymph nodes are up). If there's any advice I can give you is make the appointment, push for MRI (you say you have dense breasts) and take it from there.


    I wonder if hysterectomies don't set off breast issues, just wondering...


    There are people on this forum that have IBC and they will be in a better position than I to recommend what to do. And I live in Switzerland so I don't know how things work in the US


    Sometimes, our breasts do crazy things and we never have explanations. A friend taught me to 'stand in the middle' and give yourself a 50% chance of thinking things will be fine, (or more than 50% if you like!). Not everything is IBC but it's really scary, I agree. Meanwhile, against anxiety, you might wish to rub lavender oil on your next and chest (not breast). It works well for me, anyway


    Don't wait. And if you're really petrified,there's always the IBC clinic at MD Anderson. Don't know how far that is for you. I'm considering this option if my breast doesn't clear up in the next two weeks.


    Take care,


    Alicki

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  • pammyjean
    pammyjean Member Posts: 5
    edited October 2013


    Thank you Alicki, that is good advice about standing in the middle. I am trying but it's hard when everything points in one direction, you know? And I was not aware of that clinic which is actually around 1500 miles from my home but only about an hour away from where my daughter lives in Texas. That is good to know. :)

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  • alicki
    alicki Member Posts: 661
    edited October 2013


    hi,


    About pointing in one direction. THree years ago, I had ALL the signs of ovarian/Uterine cancer (bloating, pain, bleeding in between periods) and it took an operation and multiple biopsies to inform me that all I had was a very minor inflammation of the uterus. So you can have all the symptomes of something and it can be something else, that's why I'm saying 50/50.


    FOR IBC investigations, my situation is bizarre, because the only symptoms I have left, aside an infection because i picked a biopsy spot..! (are pain and redness gone two months ago) is a slight enlargement of one breast, lymph nodes that are up but not of a pathalogical size (dixit my BS, will get them measured today...) and very slightly thickened skin. One of the best Breast surgeons in the world (UK), has said that I suffered an episode of lymphmatic disorder + mastitis which in my case, now thinking back, could have been brought on by a lady who squashed like mad twice my breast in a mammogram 15 days before all this occured!


    Switzerland doesn't treat mastitis with antibiotics, unless it's evident so I was never given antiobiotics!


    However, I'm still in lumbo land because my breast doesn't feel the same as before. So my advice is to head straight for the best place in the world for this MD Anderson, and if they say you don't have IBC, then 99% you don't. Peace of mind is priceless and at least you'll pay a visit to your daughter, yeah! As I said elsewhere, I am considering going there myself, if the situation doesn't improve over the next two weeks - or back to the UK:


    And remember; you are your best advocate!


    good luck alicki

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  • pammyjean
    pammyjean Member Posts: 5
    edited October 2013


    After two doses of Keflex I would say about 30% of my symptoms have diminished. As of this AM, the majority of the redness is gone, my breast is softer and the temperature has decreased (though my breast is still warmer than the right one and the skin on the left nipple/areola area look strange). The flat spot on my nipple is also still there. I am waiting today for any recommendations following my mammo and US yesterday and I have already contacted University of Michigan's breast cancer center and they should have the referral by this morning so I can call and make an appointment.


    My question is, if it is IBC, will there be a response to abx? Of course I don't want it to be that so am I crazy to grasp in the direction of it being an infection? And Bon, I will contact our local Onc office today. Thank you.

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  • pammyjean
    pammyjean Member Posts: 5
    edited November 2013


    I am happy to say that I just got back from University of Michigan and that they do not see any trace of cancer in any form. Their opinion was that I actually did have an infection after all. By the time I got there, the inflammatory symptoms had subsided after a week of antibiotics. There were no problems with my skin, heat or redness.


    I had at least a dozen painful mammogram shots plus another ultrasound on the affected side. They asked if I had injured my breast at all, saying they've heard of this happening from a hit from a child or a puppy's paw but I couldn't remember any trauma. (I did jokingly tell them that after all the very painful mammogram shots that NOW I could say I've had trauma. I'm not a bruiser but I actually have one from them!)


    The radiologist sent me to the breast surgeon who called it mastitis, said I need another week of antibiotics and if I have any more problems to call him back.

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  • christmasgirl1960
    christmasgirl1960 Member Posts: 19
    edited November 2013


    Wonderful, wonderful news, pammyjean! Now I hope you can relax and enjoy your weekend!! Best wishes always.

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  • Mercy5nj
    Mercy5nj Member Posts: 24
    edited November 2013


    Hello I am 48 years old and recent was diagnose with IBC in early September. I am presently, having chemo going on 6th treatment next week. (Taxol) . I am stage IV with mets in the bone.I am having a problem with my oncologist at slogan she tells me that having a mastectomy according to her is a clinical trail and she is not sure for me to have it. After during intense research with other cancer centers including Md. anderson survival rate goes up when the primary tumor is remove. My question is has anyone with IBC been told that surgery is not option?


    Thank you,


    Mercy NJ

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2013


    Mercy,


    Some oncologists do not want surgery with their stage IV patients. My onc took it off the table for a year but did not exclude it totally. After I was shown to do well with chemo and became stable, He had me do the mastectomy. My PET scans were not clean until I did the surgery.


    Terri

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  • Mercy5nj
    Mercy5nj Member Posts: 24
    edited November 2013


    Thank so, you Terri for your reply now I have a better understanding. This oncologist does not give clear answer to my question. I feel she rushes to go to the next patient this is something that my husband and I don't like. We our at slogan because the surgeon is really good!. Thank god she agreed for me to see a local oncologist for treatment and he is total difference than she, he takes his time for my question, he said the exact thing you mentioned. I just want to verity from someone who had gone through this. So, hopefully I can get to that point which is not easy, but is about survival. Thank you so, much Terri I wish you the very best my prayers are with you. I have more positive out look since I need to keep going for my 3children and husband. You are a great inspiration as well as Bonnie.


    Best wishes,


    Mercy

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2013


    Mercy,


    Thank you. Sending prayers to you as well. I hope all your treatment works well for you.


    Terri

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