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Could it be IBC

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Posted 12/15/2010 4:11 PM (GMT 0)
Hi, I am new new this site. I was reading some of the posts on ibc and had a few questions. I have SLE ( lupus)  about a year ago my husband found a small welted area on my right breast. It was not a lump it was flat reddish was about the size of a lima bean and simular in shape.  It continued to grow and at times the color would change sometimes looking like a bruise. I also developed a simular area on my back directly through from the other. I went to a breast center and had a mamogram that only showed 2 normal size lymph nodes. They schedules a needle biopsy. but then would not do it due to I have a shunt that runs down my chest. They didn't feel that there was a need for concern. I later went to another breast center that just looked at the previous ultra sounds, and mamograms and said it was nothing. So I decided I had enough and just gave up. I get so sick of doctors. I see so many rhumotologist, neurosergeons, neurologist, cardiologists, and my primary. Well the area continued to grow, and a third area came same side on my shoulder area. Deeper than the others though. My husband made me go to a new dr. So I finally had the one one my breast removed, and now I'm waiting for the results. The surgeon said it was not a tumor, but was a large unidentified mass. It was about the size of a baseball, but not the shape of one, more like a pancake. She said it could be an inflammatory mass due to the lupus. I can't find any pictures of inlammatory masses from lupus, but I have seen some pictures of IBC that look simular. If anyone has any ideas please help, I'm axiously waiting for my results.

confused   Thanks....Joe Baby

Posted 12/16/2010 1:27 AM (GMT 0)
I think all you can do is wait for the pathology to come back; do you live outside of the US? I'm wondering if you went to Mayo, Cleveland or John Hopkins; some place that specializes in abnormal issues?
Posted 12/16/2010 11:47 AM (GMT 0)
I agree with Janice. You'll have to wait for the path reports. I have never heard of lupus causing IBC, so if they are thinking it is lupus-related... Please let us know how your path report comes out, okay? Hoping for benign results for you!

Hugs...
BEV
Posted 1/4/2011 12:48 PM (GMT 0)
Hi, well the reports are in. The area that they took off my chest showed a b cell low grade non hodgkins lymphoma. So I thought ok its a slow growing type I can handle this then they ordered a pet scan to see if the other areas are cancer and to see if its anywhere else. Went to see oncologist yesterday and scan confirmed the other 2 areas are cancer and it apears it could be on my bones. So I have a bone marrow biopsy scheduled for Friday. On my 33rd birthday. My oncologist said the biopsy results from my chest and the scan don't add up. She's thinking that the low grade is becoming more aggressive. If bone marrow biopsy confirms then its chemo and transplant for me. I'm freaking a little. Ok a lot. I know this is a bc forum but there's not one for lymphoma. I'm so scared cuz I know the disease can kill but I also no as a nurse of many years so can the treatment. Is there anyone that's been through this. Or know someone who's has been and servived. I still know nothing. All I know is I've neen fighting since I was born. Been through a very abusive childhood, brain surgery, lupus,every obstical you can imagine. And I'm gona keep on fighting. I have the greatest husband of 16 years and 3 beautiful children to fight for. My journey here is not over. My oldest just had her 15th bday. They grow up so fast. My middle daughter is little mommy @ 11 and my 8 year old son is amazing. He's blind and so smart. I have to be here to see how they turn out college marriage babies. Well thanks for the ear ill be in touch with the results itl be around the 17th of jan for the results. Thanks again for listening......jo
Posted 1/5/2011 4:02 AM (GMT 0)
Oh, Jo... I'm so sorry to hear about the lymphoma. I don't know lots of people who've had lymphoma, but most of the younger people I've known have survived it. I think attitude counts for so much in the cancer battle, and you are obviously a survivor! Have you had to take a lot of immuno-suppressants due to the lupus? Just curious. Keep in touch... would like to know how things are going for you.

Hugs...
BEV
Posted 1/5/2011 12:40 PM (GMT 0)
Hi Bev, no not really. I've been on plaquinel for about 3 n half years. Other than that no. That was one of the questions my oncologist asked. I was never a sickly person. I start gradually with the lupus @ 17 after I got pregnant with my oldest. I had a lot of problems with my pregnancy they suspected lupus. I never did get a def diagnosis til bout 3half years ago. It just kept getn tossed around. I had hydrocephalus in 2004 which was rare at my age, later they said could've been from lupus. My oncologist really seemed dumd founded when she met with me and all the tests are showong different levels of cancer. That's why the bone marrow biopsy. I'm really hoping for the best but fearing the worst. The waiting is terrible
I wont know anything until jan 13. That seems like a million years away. I just want to think of something else but it occupies my every thought. If I knew even if it was the worst. It seems like it would be easier to deal with cuz then I would have a better understanding of what's going on and I could research and get more info on tx and trials. Well I'm living my life as normal as I can. Went shopping yesterday and gonna clean house today. The worst is I still have to be mom and I'm the more disaplinarian in my house. I feel so guilty everytime I have to chastise one of the kids. I want to just give them whatever they want. And let them do what ever. But they still need correct guidance and to stay focused in school and do chores. You know what I mean. Well ill keep you informed when I know more. Thank you for you support it really helps. Be in touch soon ....jo
Posted 1/5/2011 11:17 PM (GMT 0)
Not knowing what you're dealing with is really hard. My kids were about 12 and 13 when I was dxed with breast cancer at 36, so I know just how you feel. If anything happened to me, I didn't know how my husband would ever be able to get them through the teenage years. My oldest had to take her private HS entrance exams while I was being wheeled into surgery for my mastectomy. I felt so sorry for her, but it was important that she did that, and she aced it, but still... it was awful knowing that she would be sitting there taking such an important test and I would be the big thing on her mind. I sat in her 8th grade graduation ceremony, bald and hot flashing like crazy, wondering if I would even live to see the next one go through her 8th grade graduation the following year, much less see them graduate from high school! I made it through all that, though, and trying to keep my life as normal as possible was critical, as far as I'm concerned. Not saying that I didn't have my pity parties, but I just kept putting one foot in front of the other until I got there. Both of my daughters have their Master's degrees now, and the older one is working on her PhD, the younger one concentrating on being a mom for now... and believe me, I plan to see that grandbaby through her PhD, if that is what she wants to do! LOL So time has really changed my perspective. I am so darned grateful for each and every day, now! Time is the only thing that eases that fear and turns hope into determination.

So sorry you are having to go through this. But gosh, the things you have been through! Do you have a shunt for the hydrocephaly? Or was it a Chiari malformation? That is really strange.

Keep us up to date. Cancer is cancer. The emotional life impact, I think, is pretty much the same. We may talk about boobs a lot around here, but living is our biggest concern. You're welcome to stick around.

Hugs...
BEV
Posted 1/5/2011 11:37 PM (GMT 0)
Hi thank you for your words of encouragement. Yes I have a shunt I was tested for chari malformation didn't have it thank god. You've really been through it to. I've heard what don't kill us only makes us stronger. I will be strong and keep my head up. So is your cancer in remission? I hope so. Thank you again...Jo
Posted 1/7/2011 12:51 AM (GMT 0)
I am 16 years NED (no evidence of disease). There is no cure, for breast cancer, so we never get to say," cured." You are right about becoming stronger. I think I am such a different person since dealing with cancer. I often refer to life "BC" (before cancer), and life "AD" (after diagnosis). I wouldn't wish a cancer diagnosis on my worst enemy, mind you, but yes, there are positive ways in which it can change your life. I enjoy life much more on a daily basis than I used to!

Hugs...
BEV
Posted 1/14/2011 7:30 PM (GMT 0)
Hi all. So I got my results today. Bone marrow biopsy was inconclusive. So we're going to do watchful waiting for 2 months then do another Pet scan at the end of March. Then I'll See doc again begining of April. they're going to compare this scan with that one and if it still shows cancer in my bones, then Chemo. She showed me the scan and it looks like paint splatered spots in my bones, but they say its slow growing. I'm confused. They called it
Stage IV B Cell Marginal Zone NHL. I looked it up and there is still other classes under that. How do I know which one? I had an area removed on my right chest still have one on my back near the right of my spine, one in my right shoulder blade, and then the splatters all over my bones. She said it's slow growing. i'm so confused. Does anyone have any info, also I have lupus. Don't know if that matters. Feeling a little better though knowing I won't have to go through chemo for at least a couple more months, but scared about it spreading...Jo
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Posted 1/16/2011 2:29 PM (GMT 0)
Yeah, I really don't understand the classifications for lymphoma, sorry. I would be confused, too. I don't understand waiting to do chemo, either. Wish I could offer you more than cyberhugs, but that's about it, kiddo!

Hugs!
BEV
Posted 1/16/2011 3:07 PM (GMT 0)
Hi Bev, Thanks for the Hug. I've been doing a lot of research, and I found a NHL support group forum, so I'm starting to understand a little more. I'm more comfortable now with the decission to watch and wait. They will monitor me very closely for any change, and then re evaluate for treatment. It's because it's a slow growing cancer, and though treatment can put it in remission, it will come back. It's a cancer that has to be maintained like Lupus, or diabetes. So I probably will need tx at some point maybe more than once. The side effects ffrom the chemo could make me sicker than the cancer right now. So I'll wait to see what the comparison results show. I'll keep you posted.
Thanks for a;; the support.....JO
Posted 1/17/2011 8:04 PM (GMT 0)
Hi, Jo... So glad you have found a support group specific to your diagnosis. Glad to hear this is one of those cancers that can be treated as a "chronic" condition. Pop in every once in awhile so that we know how things are going!

Hugs..
BEV
Posted 4/6/2011 10:39 PM (GMT 0)
Hi Bev, Been a While well we got more bad news I guess Im an unique case. the lymphoma has spread to the dura of my brain and spine and all my bones including the spine. I just started Ratuxin infusions and if it doesnt start to shrink the tumors in the dura then High dose methotrexate in the hospital. Well I am handling this ok.Will keep you posted.....JO
Posted 4/9/2011 2:26 PM (GMT 0)
Sorry to hear this news, Jo. Hope the Ratuxin is helping. How long will it take before they check for progress? I know it is hard to stay positive when things take a turn for the worse, but attitude is a big help in the push to fight progression of a disease like cancer.

Hugs...
BEV
Posted 4/9/2011 2:35 PM (GMT 0)
HI Bev, I have 2 more rounds then. My last round will be on the 22nd. Then I'll see the doc that same day to set up for the MRI. After that well talk about Chemo. I've been tryingto keep positive. I have good and bad days. How have you been? Good I hope. I'll be glad when this thing is all over I feel like it has already taken up enough of my life. well I had tx yesterday so I slept most of the day I think it's all the Benedryl they give ya. I feel ok today just alil tired. Well talk to ya later.....JO
Posted 4/12/2011 12:15 AM (GMT 0)
Staying positive is hard. Sometimes you just have to have yourself a big old pity party! And then you get up and go at it again. You are right... this has taken up enough of your life, and I always felt like I didn't want to give cancer one more minute of my life than I had to. I always told myself that if I wasn't living with it, then I may as well be dying from it. I could get hit by a bus tomorrow, and then I would have wasted all that time worrying about dying from cancer! Sounds kind of silly, I know, but I'll tell you a true story... I had an acquaintance who survived lymphoma, then breast cancer. She was very depressed, even after several years of being cancer-free, and constantly worried that she was going to die from one of her cancers. She and her husband went out to dinner one evening, and a guy ran a red light, hit them broadside on her side of the car, and she was killed instantly. It was a devastating loss to my best friend, who was much closer to the lady than I was, but it proved my thinking was not so off the mark, I'm sorry to say. I couldn't help but think about all the years this woman had wasted worrying about cancer killing her.

Wow! Way to cheer you up, huh? Anyway, take care of yourself, Jo. Good to hear from you!

Hugs...
BEV
Posted 4/12/2011 1:58 PM (GMT 0)
I know I'm not wasting any of my life on this. I try not to think of dying, only living. thst'd terrible what happen to her, but it's the truth. Life is short and shorter for some so live while you can. and I plan to. I think 2 of my tumors are either gone or so small I cant feel them anymore so I have high hopes that this medicine is working and maybe I wont need chemo....Be well.....JO
Posted 4/13/2011 2:23 AM (GMT 0)
That is wonderful news! Hope your scans prove you right!

Hugs...
BEV
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