feeling fine...what to exspect

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julieann
julieann Member Posts: 21
edited June 2014 in IBC (Inflammatory Breast Cancer)

I am thinking I may have IBC. I have several of the symptoms and am going to see my doctor soon.Need to have my insurance kick in at work. I have a few questions about your general health and how it progresses with an affirmative diagnosis of IBC. I feel fine. I wonder how long that lasts, prior to any treatment regimes? Also has anyone who has IBC, been treated without chemo. I wonder if there is a protocol out there that deals with this cancer on a little bit less radical way. Would really like any feedback any of you can give.

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  • julieann
    julieann Member Posts: 21
    edited January 2011

    I thought I should describe what my symptoms are, I have a light redish patch of skin on my left breast.. It is about the size of my hand. If I lay my right hand onto the outside of my left breast with my palm starting at the outer area of the areola, the patch is about the full size and shape of my hand. It extends from the areola to the midline under my arm.There is an overlaying mottleing on the red patch in the palm area. (refering back to a visual guide, using my hand for reference) There is a hardened or thickened area of skin that is about the size of my palm and has tentacles that reach out towards my underarm and both up and down my breast near to the areola. When I raise my arms the skin on my left breast pulls in where the majority of the thickening is.The brest area is not overly warm compared to the right breast. Maybe just slightly.The only swelling is a small area just above my left nipple in the areola area. I have an aching breast most of the time. Some times I forget its there, and other tmes I can feel nothing but the ach. For months prior to this recent physical appearance, my nipples had shootong pain when stimulated by foreplay. About two years ago I went to see my doctor about hard marble size lumps in my armpits, he refered my to have a mamogram, which I did right away. The results were "nothing abnormal", suffice to say, those lumps are still under my armpits.

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2011

    Julieann,

    One of the difficult things about IBC is that because it isn't common, most medical providers fail to recognize it even when patients themselves do. I think you have started to realize that, and it doesn't feel good at all. Whether or not you are correct about what you have, push hard to have it fully analyzed so that you get a definite answer and not a "guess". Look on the net for examples of what "peau d'orange" skin looks like. Do you have that? Try going to a breast care center for a careful exam.

    Sympathetically,

    AlaskaAngel

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  • julieann
    julieann Member Posts: 21
    edited January 2011

    thank you for the reply, I am not sure how to proceed. I usually go to a clinic for general health care, in other words don't have a personal physician. One of the Docs at this clinic is a friend on a greet you in the street level. I was thinking about asking him to just refer me to the large teaching hospital in our state. I am wondering what I should have him ask for... a punch biopsy for sure, but what kind of imaging would be best? I want a conclusive outcome, and would like to get it over with sooner than later. Better to rule out IBC right away, or start dealing with it is my thought.

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  • lorieg
    lorieg Member Posts: 802
    edited January 2011

    Can you just schedule an appt to see a breast surgeon?  That's what I did and had a biopsy the same day and got the call the next day.  Hopefully it is not IBC and most people who post in this forum end up fine, BUT if it is IBC you need a diagnosis NOW.  IBC is so aggressive and can spread in a matter of days-weeks. 

    If you do have IBC, which I pray you do not, then no, you can not skip chemo and traditional medicine and go alternative or you will die.  Sorry to be blunt, but unfortunately it is the truth.  Like I said IBC is very aggressive and not an "early stage" kind of breast cancer.  It can only be stage III or IV at presentation.  Quick diagnosis and prompt treatment is critical to save lives. 

     Best of luck,

    Lori

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited January 2011

    If I were you, I would not hesitate to contact the doctor you know just to ask him what your choices are. I don't know what the result will be but it also would not hurt to call your public health center and see if a public health nurse can be of any help in directing you, as she may know of some sources and resources to help you. Ask to be seen at a breast care center if possible, where they have at least had some direct experience with IBC and have the equipment and staff to go ahead with investigating it fully. The large teaching hospital should have some connection with a breast care center.

    Please let us know how you are doing with all of this as you work on it.

    AlaskaAngel

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  • julieann
    julieann Member Posts: 21
    edited January 2011

    I will keep in touch as to how things progress. Thank you for the input, one and all. Julieann

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  • julieann
    julieann Member Posts: 21
    edited January 2011

    I was wondering what you all felt while undergoing treatments. What types of cancer drugs you were put on and what side effects you encountered. Could you still work? How much time off work did the treatments need?

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  • leisaparis
    leisaparis Member Posts: 587
    edited January 2011

    Hi Julie,

          I guess I'm one of the lucky ones. I didn't have all the bad side effects as some of the others did. They say if you handled morning sickness or are able to do roller coasters well, then you will probably do well with chemo,

         I had some neropothy of the feet & hands. A little nausea, but the pills take care of that. When I got the Newlasta shots I had a few days of whole body aches. Like having the flu. As for time off work. I work a 4 day work week. We do Mon.-Thurs. If we need to work overtime that's on Friday.

         So I scheduled all my appointments for Fridays. That way I didn't miss any work, unless it was overtime, then I missed that. I took treatment on Friday's, okay on Sat., a little tired, cuz I work till 4a.m. then went to treatment. Felt a little crappy on Sunday & Monday, but always went to work on Mondays.

         As far as the drugs I was on, It's different for everyone. It all depends on your ER/PR, Her2, stage, grade, etc. Have you had any confirmation on your stats? Do you know for sure what any of your stuff is yet?

         Good Luck & God Bless,  Leisa

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  • julieann
    julieann Member Posts: 21
    edited February 2011

    Leisa,

    I really appreciate that you took the time to write back to me. Thank you. It helps me to know that the treatments may not be so devistating. Julieann

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited January 2011

    Hi Julieann,

    Have you had any news on a DX yet? I am praying for your sake that it's not BC. However, if it is and if it's IBC, the aggressive treatments are really the best way to go. From what you described of your friend's experience though, the chemo used to treat this is nothing like that. I just finished two rounds of chemo, 8 weeks of dose dense A/C followed by a 12 week weekly course of Taxol/Herceptin and now I am on the Herceptin alone for one year every three weeks.

    Don't get me wrong, all chemotherapy has it's set of side effects but I found that they weren't as bad as I had imagined them to be. I guess I have been lucky in the sense that I was unemployed when this all started so I have not had to deal with trying to juggle appointments with a work schedule. The course of the A/C treatment was the "stronger" stuff, but I only vomited twice the whole course. And both times were early in the morning when I had gotten up and had to be somewhere quickly. DH attributed it to just moving too quickly first thing in the morning. Other than that, the nausea was very manageable and I only seemed to experience it lightly within the first couple of days after an infusion. Usually the first night after a treatment, I would also experience what I called a chemo headache. So I would just take it easy and try to sleep through it and it was usually gone the next morning.

    Round two of the Taxol wasn't so bad at all. In the beginning I felt like I could move mountains from the Decadron (steroid) that they give you in conjunction with the Taxol. The only real side effects that I noticed from the Taxol itself was the loss of my period and it effected my nails. Toward the end of my treatment cycle I had to cut my nails really short because they began separating a bit from the nail bed. With the second round I seemed to have most of my side effects from the steroids than the actual chemo; some weight gain (that fluctuated a bit as well), my face looked puffy and insomnia. But also keep in mind that everyone's body reacts differently so you may have some of the same side effects that I did or you may notice others that I did not.

    All in all, though, I would say the benefit of the chemo WAY outweighed the side effects I experienced and I would choose that route over again if I had to versus alternative medicine. This type of cancer is so very aggressive that I simply wouldn't take the chance of not coming at without both barrels fully loaded and with rapid fire!

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  • lorieg
    lorieg Member Posts: 802
    edited January 2011

    I was 32 at diagnosis, working full-time and with a 6 month old and 3 year old.  I tolerated the treatments just fine.  I have been on some form of chemo for almost a year and a half.  I work full-time and take care of my kids without problem.   In fact the last 17 months have been the best of my life (and worst in some ways)  I have done more, seen more, and experienced more that I have during any other time.  I have vacationed a lot, been skydiving, bull riding, checked many thnigs off my bucket list.

    Hopefully all your concern is for not, however.  Have you been diagnosed?

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  • julieann
    julieann Member Posts: 21
    edited February 2011

    hello again,

    The end of the month is here and I am finaly getting to see a doctor at the unm cancer center. ( they have partnered with MDA on IBC research, so I feel they will be able to best diagnose this) They will be giving me a consult in the AM and then a biopsy around 10:30 tomorrow. I  have been pretty anxious about the whole thing. I went to the doctor I knew ( background as an oncologist, and he knew all about IBC) he referred me to the cancer center. He clinically diagnosed me with IBC.  I feel that unilI get the biopsy results, it is not official.

     This last week has been really hard waiting. I had to switch days off with a co-worker and have been keeping the whole cancer issue under wraps.  So asking for the day off and not giving a reason was hard. My co-worker asked me today what I was doing... I just said I was going to Alb. Vague. Thank goodness I did have work to help me pass the days. I think I would have gone stir crazy.

    So, I have read and re-read just about everything there is on this site. I hope I ask the right questions tomorrow. My husband is out of the country right now, so I will be taking him along via laptop. I have skype, and I am just going to call him and let him listen in and ask questions if he needs to or wants to. I am also taking a small tape recorder, so I can remember everything that was said. I am sure that my mind will be a total mush bucket, before the day is done.

    Well thanks for listening to me carry on. Guess I just needed to tell somebody.

    Love, Julieann

    I am hopeing that they will be able to possibly get some imaging done tomorrow also. I am going to ask anyway. It's a 3 hour drive one way for me, so I want to make the most of it. My alrm is sset for 4AM. Hope I can sleep prior to the bell going off. Sleep may very well evade me.

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  • Momcat1962
    Momcat1962 Member Posts: 665
    edited February 2011

    Was it IBC?

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  • julieann
    julieann Member Posts: 21
    edited March 2011

    I got home about an hour ago. Long, Long day. 280 miles round trip. I made the most of it though. My first consult was with a surgical oncologist. 8AM. She took all my information. My husband was on the computer in the room and listened to the interview and interjected when he thought he should. It was really nice having him with me today. He stood by the phone the whole day and I was able to keep him up on what I was doing and also just to be able to  have a chat with. So anyway, the biopsy was scheduled for 10:45 and actually happened around 12:00. It went well. The Doctor did the breast exam just befor the biopsy. Her comment was, this does not look like typical IBC. Lets make sure we get enough tissue to be sure. SO she dug around in there several times. She actually had a hard time getting some of the samples. She did a punch biopsy, 3mm size and then did 5 or 6 cup biopsys. That was the harder part. She said that the area was hard. She did think there was something going on. and put a rush on the biopsy results. Which means 24 to 48 hours. I then went to imaging and after several hours of waiting, they did a mamo and an US. The radiologist asked why I was there. I said we were looking at thickened skin, reddened area and distortion of the left breast. He looked at the breast and the auxsilla (sp?) area and commented, it doesn't look like IBC but it could be. He didn't have much comment after that. He did say that he thought it was a good idea to of had the biopsy, since what he was looking at was not very questionable. Maybe some wierd skin thing. So, I left with about what I went with. The biopsy will be the most determining factor. They also took blood samples. It was a full day, filled with anxsed (also sp?) Did any of you have that kind of responce from the mamo and US. I know that mamos can be unclear with IBC, but what about the US. Is it more clear? Does the radiologist need to have seen IBC before to recognize it? I can be happy that they did not find any large lumps. At least they did not indicate that they had. Ihope the biopsy comes back negative.

    thanks for listening again.

    Julieann

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  • julieann
    julieann Member Posts: 21
    edited March 2011

    Bonnie,

    My symptoms are a reddened area that reaches around the left side of my areola and stretches to a point directly under my arm pit. About the size of my hand. The skin in this area is hard and thickened. It was originally about the size of a 50 cent piece with fingers that reached back to under my arm and also to under my nipple area. Pretty much the whole redened area is thickened now. The skin is also pulling in my breast, in an arch that goes up and down, it is where the thickened area is the most pronounced.The pulling in has also lifted that breast about two inches, from it's previous position. My right breast does not have any of this going on. If you look on the IBC.ORG  website the skin looks similar to the second example of peau de orange. Mine does not involve the arerola or nipple area though. It does not have the swollen appearance that is more typical. The skin also itches., not alot, but I find myself unconciously reaching to the area to scratch. I don't though, just don't think it ould be benificial. I am trying to not aggrevate the area at all.

    The mammo and ultrasound were done, I think because they needed to do a progression of tests to warrent the next test. I had not had a mammo in a while, so I was okay with having that done anyway. I think that if the biopsy comes back for cancer, they will be justified in doing the PET scan, MRI or CAT scans. Do you think I should insist on these or one of these anyway. I think I may have some bone issues. Hopefully just my worst nightmares taking off on me. I can find tender spots on my ribs, by palpatting along each one. They feel normal, like hard bone... not like anything really and then there will be a hot spot, a tender spot. I can press my finger on it and really feel it being tender. Like having a fresh bruise and someone presses on it. It hurts, but not horribly. Also the pain caused by the pressing will linger for many minutes after. So would it be recommended to insist on one of the other scans no matter what? And which scan would be the most telling? I just don't want to go nuts with this, but also don't want to get caught with having missed something and really be the worst off for it. let me know your opinion.

    Thanks, Julieann

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  • julieann
    julieann Member Posts: 21
    edited March 2011

    I have just recieved the pathology report, and a call from the surgical oncologist who did the biopsy. The biopsy showed no breast cancer. So that is really good news. I cried, and was really surprized by my reaction to the findings. My husband was so relieved. I have had a little time to absorb this news. Am feeling realy much better. I think I had been holding my emotions at bay. The flood gates just opened up. I am being referred to a rhumatologist (sp?). What the biopsy did show was a disease called eosinophilic fasciitis, It is similar to scleraderma, but has several discerning characteristics. It presents very similar to IBC. It is in the skin, deep in the fascia and has the red coloring, pulling or tightening of the skin and the orange peel look also. The onc was still concerned about the pain on my rib bones and the flank pain. She thought I should address that with my primary care doctors. She did not feel it was her specialty. So good, no... great news that it is not Breast Cancer. Thank you for being there. To read my posts, to keep me in your thouughts and to hear from your exsperiences. I can only pray for all you good graces to be returned a thousand fold.

    Love, Julieann

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited March 2011

    Julieann - So happy to hear the good news!!!!!  Good luck with the treatment for eosinophilic fasciitis and best wishes for a speedy recovery!

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