Inflammatory Breast Cancer

Most were not really familiar with IBC and only one had ever been in contact with a case of IBC. Please keep spreading the word. I have noticed you have been a giant voice for IBC patients everywhere just in the short time I have been researching and reading. Keep up the wonderful job and my prayers and thoughts are with you also. Thanks for all you do!!

I wouldn't second guess myself - you made the best decision you could at the time with the information that was made available to you. Interesting comment about the tatoo - about potential seeding. I wonder if anyone (other than you)
has ever considered that. I had Paget's Disease of the nipple and was absolutely clueless that anything was wrong - never had heard of breast cancer as having a skin manifestation - you are not alone. I've read a number of your posts and you do excellent research - this can only help you in the long run.

Gulffrittalary wrote << Saw this article today from a reporter dxed with IBC - don't know if the whole article will show up as it's rather lengthy:

Thanks so much for sharing. There were some similarities between her story and mine except that my IBC was in the nipple only. I didn't know very much about b.c. at the time of my dx, allthough set out to learn as much as I could as fast as I could. I had read something about neoadjuvant therapy. I asked my surgeon about seeing an oncologist and was told that they didn't like to see patients until after surgery.
I then made an appt. with one of the top breast centers in the city. At the same time my husband had wanted me to also go to UCLA. The problem was that
UCLA needed all the files/pathology slides 5 days before the appt. on a
Wednesday for a Monday appt. The problem was the other place I was going also needed everything--although on same day--and my appt. for there was at the end of the week. I wonder, if I had gone to UCLA, where they use a team approach--whether they would have picked up on the IBC sooner. I wonder if having chemo first would have made a difference? Then, we also tried to get into the City of Hope (where my mom was treated). However, I could only get into there after my chemo was scheduled to begin. I had had a sooner appt. but they had to reschedule.
My mistake--was getting all the initial 2nd opinions--surgery and plastic surgery. I did ask about treatment but was told to concentrate on the surgery aspect first and led to believe that b.c. was slow growing. It is for most.
Hopefully because the dermal lymphatic invasion was limited to the nipple that that hadn't yet spread at least at that time.
However, I did have a later concern that I would have done something about had
I realized what was happening. I first had surgery--bilateral mastecomy and the 4 cycles of AC. I then went for radiation (before next chemo regimen).
While getting marked for radiation I was tattooed. The gal who did it put the first tattoo in a location near the tumor and then did the other areas. She used the same needle. My thoughts--if there was dermal lymphatic invasion and there were still microscopic cells in the area that that could result in tumor seeding. One does have to be careful with regular tattooes--has potential to spread hepatitis and aids.
I also read that the process of the core biopsy may have the potential for tumor seeding. My surgeon did the biopsy in 5 different areas of the mass on my chest. The area became very bruised. I never healed from that. When she first felt the lymph nodes that day, none felt swollen. However, within the next week that area swelled as well. Although the nodes were probably positive
I wonder if the disturbance done to the area resulted in further spread, particularly because of the aggressiveness of the cancer types found. If I could change anything about that, knowing what I know now, I would have had immediate chemo and/or at least not waited more than 3 weeks before surgery and then another month before chemo was begun....

Karen wrote << Your observation about the tattoo and potential seeding really caught my attention. I would highly suspect that this is very possible if not probable. Possible seeding has been a great concern of mine because my mother's breast was so inflamed and swelled that the skin area would break open and drain. >>

I first became concerned about the effects of the core biopsy after my cousin, a former veterinarian (who developed an allergy to cats, sold his practice, went on to demonstrate ob-gyn equipment, and then invented the video camera that is the size of a quarter which made oscopy procedures possible and also worked together with his dr's to develop a treatment for some gastrointestinal difficulty he had--that was completely different than the recommended treatments--which he co-authored for publication with them is some medical journal) told me of his concern which was that the process taking place after the biopsy (healing process) had the propensity to creat new blood vessel formations and contribute to possible cancer spread. Interestingly, since he first told me that I did find an article that suggested that possibility.
There are many reasons for medical decisions, however. In determining treatment timelines, what was considered was statistics on overall survival rather than individual outcomes. That doesn't mean that there isn''t a difference between any given treatment for any one person--only that survival is about the same--for the entire group as a whole.

Karen wrote<< My other area of concern is my mother's colostomy is also located on the same side as her affected breast within a few inches.....a direct opening to her entire abdominal cavity. Since her chemo tx, the open areas have begun to heal so the drainage has almost ceased. I guess time will tell...... >>

Very interesting...

Kaye301 wrote << Thanks for the feedback. I don't think of myself as having a giant voice--am a bit intimidated, at least at times, otherwise I would have done or said somthing more when my former ob-gyn dismissed my concern about the mass I showed him.

Yes, you are a voice, giant or not for IBC and BC patients and their families. Your research is excellent and it is educating many others like myself. Because you are personally affected by BC, you educate not only with knowledge and research, but with emotion and passion. That's what helps others learn....someone who gives it their all and is totally dedicated to the cause.

I'm learning very quickly to speak up, voice my opinions and concerns and ask questions, questions, and more questions.

Your observation about the tattoo and potential seeding really caught my attention. I would highly suspect that this is very possible if not probable. Possible seeding has been a great concern of mine because my mother's breast was so inflamed and swelled that the skin area would break open and drain. I'm talking about soaking drainage that required several bandage changes a day and sleeping on protective pads at night. This would seep directly into the two core biopsy sites that were taken from the good tissue area. My other area of concern is my mother's colostomy is also located on the same side as her affected breast within a few inches.....a direct opening to her entire abdominal cavity. Since her chemo tx, the open areas have begun to heal so the drainage has almost ceased. I guess time will tell........

Thanks for the feedback. I don't think of myself as having a giant voice--am a bit intimidated, at least at times, otherwise I would have done or said somthing more when my former ob-gyn dismissed my concern about the mass I showed him.
It is frightening to learn of the lack of awareness and knowledge. Re getting the word out, several years ago I was researching another disorder--work-related that also involved one of our children (SandyL knows).
I was shocked to read that some of the texts that dr's used, including the latest Merck manual, had info that had been outdated more than 4 years before.
What was in the medical texts was former, accepted rhetorical information that was inconsistent with not only the latest research but the condition itself.
Parents would come to the website with outdated information from their physicians along with outmoded medications that had the profie of severe, irreversible side effects. When I recommended the medication that had helped our child, many took that information to their childs' physicians with mixed results. Several said the medication was not for children nor was it for this condition. They were right in that the PDR at that time indicated that it wasn't for children, and it hadn't been tested for this specific condition.
It's positive benefit had been discovered during a major university research project for something else. Although that information was published, it couldn't be advertised for this use because there had not been any controlled, double-blind studies with it.
We were lucky that our daughter's pediatrician knew about it. We (my husband and I) were quite apprehensive about trying it initially. The dr. gave us the abstracts/reports re. the anecdotal findings. OUr pediatrician felt it was the best of the medications with least side effects. It sure worked for our child such that this condition never went any further.
There was another child whose daughter was close in age to mine whose difficulties were similar to mine at one time. She shared that info with her daughter's dr.; her physician refused to give it to her child. That mom continues to have significant difficulties with her child and is also dealing with side effects from all the other meds her child has been on.
Another parent, who was in the process of looking for a residential school for her child because of severe, associated behavioral difficulitoes. She had been on almost everyone of the different medications except the on my child was on.
She took the info--about my daughter's experiences with it to her physician.
Her pediatrician was also a universty professor. They tried her daughter on it. Not only did she not have to go into residential school placement, she was able to transition back into a regular school, than out of the special education class (for behavioral/emotional difficulties) that she was in. Her mom had wanted to take this to Oprah--gulp. My child would have never forgiven me if I had done that and promised that I would keep out any personal reference. I just heard from her mom at the beginning of the summer. She was writing to tell me that her daughter had graduated high school with honors (and was doing exceptionally well in all other areas, including socially).
The internet has become a powerful resource which can be very positive (as well as destructive). Our daughter's pediatrician welcomed any information I could share with him. As a pediatrician he had to deal with many different childrens' disorders. He couldn't be a specialist in everything--there is not enough time for that.
The same is true for oncologists. They know the basics about breast cancer and even more. However, they generally have to deal with all cancers and it is hard to keep up with the latest info. about each. However, as patients our lives may depend on this new information. I have been fortunate that most of the dr's we are involved with want to work together with us. However, there still remains certain difficulties re. insurance and other related issues.

Saw this article today from a reporter dxed with IBC - don't know if the whole article will show up as it's rather lengthy:

HoustonChronicle.com -- http://www.HoustonChronicle.com | Section: Houston
Lifestyle &amp; Features

Oct. 30, 2003, 7:09PM

Surviving cancer meant finding right path to follow
By MEL HUFF
Special to the Chronicle

Unlike those knowledgeable and focused guests you see on morning television, I had no clear idea of how to proceed when I discovered I had cancer. It was doggedness -- not medical acumen -- that gave me a chance of survival. In fact,
I stumbled on the right path while looking for the wrong one.

My initial encounter with the health-care system took place in an underserved area of Texas, though it could have been anywhere. Before I moved to San Benito in the lower Rio Grande Valley to look after my mother, who was suffering an inexorable physical and mental decline, my contact with the medical profession was limited to summer cortisone shots for poison ivy.

I'm not sure when I first noticed the circle of pink skin around my left nipple