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Elle257
New Member


Date Joined Jul 2005
Total Posts : 15
   Posted 7/15/2005 1:48 PM (GMT -7)   
I've had pain in my right side breast and lymphs for the last month or so. At first I thought it was period related. Then I thought muscle strain. Then I thought blocked duct. Well now the pain has increased. My left side lymps hurt. Went to doc and he has ordered a mamo and ultrasound. He is suspecting IBC although not saying. He has scheduled an appointment with a general surgeon later in the month.

I am really uncomfortable going to a surgeon I don't know for a cancer that is somewhat rare. I live in lower Delaware where healthcare is not spectacular but is close enough enough to some states that have some facilities that are known for good medicine. I just started researching IBC. How do I find good knowledgeable docs in my area or surrounding states? The nurse that made the appointment with the surgeon was taking about having surgery and then chemo - when I said something about that not being the correct protocal for IBC she said I was mistaken. At that point BIG RED FLAGS were flying. At this point, Im really concerned.

Thanks
Elle

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 7/15/2005 3:19 PM (GMT -7)   
Elle, I can understand your anxiety and fear, but don't put the horse before the cart. There is NO way that a doc can suspect cancer, especially IBC, just from a clinical exam. You have not had the mammo or US yet? Those can help in a diagnosis, but with IBC, a biopsy is the only way to tell. Researching is good, it gives you power and allows you to ask the right questions...but there are a hundred other things that this could be.

Ask the doc why he suspects IBC at this point. If he is right, then getting a surgical consult right away is of the utmost importance. I would see someone ASAP and then if you are not sure, get a second opinion with a surgeon that you choose on your own. There is also a website called ibc.org (I think???)...you may find a link from a reputable source like the American Cancer Society's site.

Lori


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/15/2005 4:37 PM (GMT -7)   
We have a lady on this board from Philadelphia area who had IBC and has been doing well. I am sure she can help with questions should that be the diagnosis. I think she is busy with grandchildren these days, but hopefully she will read your post and answer. Lori has given you good advice about the surgeon and a second opinion. A biopsy is the only true way of getting an answer. Guesses just don't work, so perhaps the surgeon is to get the biopsy done for you. If so it is not a difficult procedure. Sorry you are having this scare, hopefully that is all it turns out to be. Hugs MK


Elle257
New Member


Date Joined Jul 2005
Total Posts : 15
   Posted 7/16/2005 7:20 AM (GMT -7)   
Thanks for your responses - When I get the results from the mamo and the US, I'm going to followup with Avon Foundation Breast Center at John Hopkins.

No doubt - I'm being alot wacky. My mom had post menapausal breast cancer and passed awy when it moved to the bone. It didn't have to. She a breast removed and 3 of her lymphs were positive. She had no followup treatment and her doc did a mamo every year for 13 years telling her that she was clear and a great success story. She was taking Tamoxifen. For the last 8 years she told him her hip hurt and he told her she was getting older. He finally sent her to an arthritis specialist who did a bone scan and told her she had cancer from head to toe. My 2 aunts also died of cancer, breast & ovarian. My grandmother died of old age at 87 :)

In the meantime there maybe another cause of my breast pain, swollen lymphs. My reg physician is bringing me in monday afternoon to look at me for lymes disease. I can't say I would have ever thought lymes would be good news but in this case it would be. . . .

Hope you all have a special day
Thanks again
elle

Post Edited (Elle257) : 7/16/2005 8:24:21 AM (GMT-6)


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/16/2005 12:17 PM (GMT -7)   
We often laugh here at how we are relieved to have arthritis, or lyme disease --anything other than cancer. I hope that is the case for you, too. Your family history is a pretty good indicator of cancer possibilities. Why in the world did the doctor not give your mother chemo when she had positive nodes? I was diagnosed at 58 and had only the mastectomy, no chemo nor radiation. BUT I had no positive nodes and my staging was 0-1, a very unaggressive cancer. I took Tamoxifen for about six months but had problems with taking it and stopped because the dr told me it was my choice due to my pathology.

You are in my thoughts and prayers as you wait to find out. Hugs MK


Elle257
New Member


Date Joined Jul 2005
Total Posts : 15
   Posted 7/17/2005 5:18 PM (GMT -7)   
Thank you so much for your response. My moms doc was a general surgeon with an more ego than knowledge. She had her breast removed in 1983 and told her as long her mamo was clean each year she was fine. Even when he saw her bone scan, he told her she had the worst case of arthritis he had seen. It was an arthritis specialist that told her she had bone cancer and really should seek out an oncologist. She lived less than a year after that. She was a large, robust women with rosy cheeks and looked very healthy up until the last 6 months or so. I didn't know when she had the surgery that she had 3 positive lymphs. I found out when I read her medical reports after her death. If I would have known I hope that I would have advocated for her. I'm not sure without the internet how much I would have been able to do. I'm not sure she knew it was in her lymphs. We were very close and I remember her telling me that her doc said that she didn't need to have followup radiation. I do know she was irritated when she had taken Tamoxifen for many years and found out she was suppose to not have taken it for as long or she should have had bloodwork? Not sure.

Thats again. Well maybe I'll know something tommorrow . . maybe not. . sometimes no news is good news :) and then sometimes news is goodnews. . . all things work for good . . .

elle

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/19/2005 8:46 AM (GMT -7)   
OK It's two days later and what have you learned? Hoping you will let us know. We all have been pretty quiet for the last few days, it happens, but most of us are here reading ready to help. Hugs MK


Elle257
New Member


Date Joined Jul 2005
Total Posts : 15
   Posted 7/19/2005 5:41 PM (GMT -7)   
Well my primary and his whole office is on vacation so I was referred to another physician. No one wanted to test for lymes because if it came back positive then they own the follow up care. I tried my gyn, my kids ped, my neruo. So off to the walk in clinic I go. The doc exams and declares that I have lymes and starts me on doxycyline 2x @ day. This antibiotic makes me really sick. I had the mamo and ultrasound on Monday. The place I have my annual mamo in upstate Delaware fedex'd my films to the womens place that I my mamo and ultrasound so they could be read on Monday. When I called this morning I was told they never read them for 3 or 4 days. I have scheduled to pick up a report on Thursday morning. It would seem that this is the only way I will get to find out what is going on. I called the gyn's office and the nurse said they never see a report before 3 or 4 days. They would call either Fri or Mon.

I travel 90 miles one way every year to have my mamo done at a facility in Christiana DE. They do the mamo. I wait and make certain the films are okay. I get dressed and I am seated in the doctors office with the doctor. My films from last year and this year are up on the screen and we view them together. He points out the changes or no changes and asks me if I have any questions. Not a difficult process. I leave after seeing my films. I'm happy, he's happy. They do this for everyone. I am sooooo stupid for not having this done were I normally go. But when the gyn said I needed it I let his nurse make the appointment across the hall from his office because I thought it would be faster and I thought that promptness was important. I let her also make an appointment with a surgeon downstair from his office (I'll cancel that appointment). I'm not quite sure what happen to my brain to make it stop functioning the minute he started talking. I don't think I should go to the doctor anymore by myself. Ugggghhhh.

So I guess I should be happy I have lyme's disease and I could really rejoice if I could get my hand on a report. I still believe all things work for good . . . some things just take longer :) trying to smile with a really upset tummy.

happy!
Regular Member


Date Joined Apr 2005
Total Posts : 22
   Posted 7/20/2005 5:27 AM (GMT -7)   
Hi Elle,
Doxyclycline is great for taking care of Lymes, the 10 days will be over before you know it! Both my kittycat and I had lymes at the same time and were both on doxy, if you have any pets, please ask your vet to do some bloodwork and have them checked too. It's great that you are taking care of it, undetected Lymes disease can be aweful later on and can really take it's toll. There is a Lyme disease board right here on healingwell, it's very educational. Good luck!

Elle257
New Member


Date Joined Jul 2005
Total Posts : 15
   Posted 7/21/2005 8:50 PM (GMT -7)   
I received my reports today and the mamo & ultrasound both came back normal. I am going to cancel the appointment with the surgeon and followup with Hopkins for a health assessment and annual exams.

I really appreciate the help and support that I have received.

Thank you.

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/22/2005 4:58 AM (GMT -7)   
Sounds good Elle. Great idea to do followup with Hopkins. Take care and remember we are here if you want to stop by again, anytime. Hugs MK

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