Inflammatory breast Cancer

[Cherie]

Anyone out there have this form? I'm awaiting biopsy results and would like to know what to expect if it is positive.

[dahlek]

the worst part of it. There is a good web site called www.breastcancer.org that's chock full of good, solid info...sorted out by the types of BC you have and the treatments, choices and options that will be available for you. Don't clutter your mind w/all the different variables until the biopsy is in tho, as there will be a heck of a lot to learn, asorb and process as you make YOUR decision.
Depending on how complex your situation is, you mite want to start 'gathering' doc's names for a possible second opinion or two. I speak from all my being in that it can be an overwhelming experience IF you let it. Don't let it! Save your energy for getting on with life and whatever course of treatments that will be on your plate.
I didn't have the inflammatory, but know of others who have. To date all are still kicking ***!
Hugs! - j

[Cherie]

I the punch biopsy done Monday came back yesterday with insufficient sample to tell more than there were inflammatory changes, keratotic changes, dermal fibrosis, but no malignant cells seen due to size of sample.

I called another breast doc 45 minutes away and she was not taking any patients till January. got on the web and looked within two hours from here so have a 2 hour appointment at a major teaching hospital at three this afternoon for a review of the slides (I have to pick them up this morning at our local hospital), a review of mammograms and ultrasounds, a review of the wedge resection and lumpectomy from 2/04 (have to call that office and see if they can locate it and fax it).

From there they will do another ultrasound, see if I can tolerate a mammogram (breast too sore for a bra? Still have stitches from the biopsy 5 days ago?) and an MRI of the breast. THEN, they tell me they will probably do another biopsy of a different area that looks suspicious.

I appreciate your link but I think it's one I've hit on during this past week. I really hope this is some sort of funky breast rash and distortion but it's been 6 weeks of morphing now and pain. It's actually a LOT better than it was at the end of October when I was getting IV antibiotics and they were calling it mastitis. (I'm 54 and non-lactating!) and now My breast and chest are covered with what looks like bites (spider).

I'll post back when I know something.

[dahlek]

If not, I'd be very surprised.
As for docs....I asked every single doc I see [many docs] for names/references...then I check out my plans' preferred providers, followed by a full web search on as much as I could find out about them. I then let my gyn [my 'referring' doc] know who I was going with.
When making the appt I mentioned that X doc gave me your name...opened doors a teeny bit faster? Aside from that, docs KNOW each other and about each other and you can BET there was a conversation between the two before my appt w/the specialist.
What your choice of qualified docs is, is determined by where you live, I guess. The most important issues are getting the best treatments on a timely basis ASAP. I sure hope you get lucky.

A true boo about a 'bad' biopsy! As for soreness, isn't that what local anathestics are for? Duh?

In the meantime, I hope it all doesn't itch? - j

[Cherie]

No real answers but lots more questions. Because I've been on antibiotics for 6 weeks now and that can have an impact on the clinical picture, if this was inflammatory breast cancer, one would expect things to ramp up over the month following cessation of meds.

She also noted that I have two breasts of very full, fibrous ducts. I lactated for more than 20 years and apparently there are a lot of milk solids sitting in those ducts causing a lumpy tender condition. There is something she called "chemical mastitis" that happens when these full ducts start to break down and leak these old milk solids into breast tissue. It can be very painful and difficult to identify and even harder to treat. Her guess is that is what is going on.

But....we need current mammograms to access what is happening and mammography was closed for the day by the time she got in to see me.

She also thinks since they never identified what caused the infective/inflammatory event that put me in the hospital...more investigation needs to be done. She is suggesting nasal swabs for VRE and MRSA. Repeating the CBC (this time with diff) and another sed rate. Repeating LFT's and Chemistries.
Doing chickenpox and shingles titers to see if that is what caused the rash. Doing some scrapings of spots that are still present to determine etiology.

Then there is a whole battery of cancer labs to see if one has it or is prone to it:
CEA
CA-153
CA-2729

My sense is that they should be ordered by my PCP and everything done here so Blue Cross will pay. Then I can go back to CT and see her with the results and get a better handle on what is happening.

I just wish I felt better. This is a sense of more than fatigue or lethargy but of general unwellness and I can't seem to shake it.

Also of note is that she wondered why I had not seen Dr G who is only 45 minutes from me. She knows her well and thinks she's super. Dr. G is not taking patients till the end of January but works in the practice with the doc who botched my lumpectomy so I think there's a hesitancy there to expose the practice to a previously wronged patient. I think that by going out of State to be seen, I may be responsible for a hefty price tag for this visit. That's why I want to get the tests recommended done here over the next week.

[~Pansy~]

Hi Cherie,

I don't know a thing about this kind of bc, but wish you all the luck in the world. Sounds like you are being very thorough. Good for you!

Best wishes,

[just laurie]

I think that by going out of State to be seen, I may be responsible for a hefty price tag for this visit. That's why I want to get the tests recommended done here over the next week.

IME, which isn't with breast cancer but is with fighting insurance companies, you may well have coverage denied initially. That is fairly routine. You also have a very good case for appeal though. Waiting until the end of January for something which may well be breast cancer would be unacceptable. You didn't go to the doctor closer to you because they could not offer you timely care.

Appeal first to the insurance company. If they deny that appeal, see what the appeal of the appeal process is. If that doesn't get you anywhere, send a letter to the state board of insurance or whatever comparable oversite agency your state has, and cc the insurance company. When I did that, payment was on its way within hours of when the insurance company learned I had contacted the oversite board!

All the best both in your search to learn what this is and treat it and in getting your treatment covered by your insurance company.

Laurie

[Cherie]

OK...Here's the plan as of today. No one in the State will do a mammogram on me because all of my films from the past 10 years are at Yale and there is nothing for them to compare with. I have a 10AM appointment at Yale for tomorrow morning to have a mammogram done there followed by an Ultrasound and possibly an MRI of the breasts. Depending on what that shows, there will be another biopsy done tomorrow.

I had all of the basic labs done here yesterday so can take results with me when I go. The list of cancer specific labs will wait till we know what we're dealing with.

My PCP said that Blue Cross cannot refuse to pay for the consult or the mammogram or other imaging tests at Yale because the local institutions could not get me in within a reasonable time frame and he will go on record as referring me there.

So....tomorrow will be a long day (4 hours driving round trip if there's no traffic or construction back-up....there was an extra hour for this last trip) with 2-4 hours at the Breast Center for imaging and physician visit and biopsy. And I have no one to go with me this trip. My husband has a heavy schedule that cannot be rearranged. One daughter has two doctor's appointments (pregnant with a high risk pregnancy) and the other has meetings all day (she's a department head where she works). My sister who lives near here has a brain tumor and is only allowed day time driving for short distances to prevent the liklihood of seizures. 4 friends from Rotary all have meetings and cannot take a mid-week day off from work. 3 friends from church fall into the same category.

I'll pop in again and let you all know what the outcome of tomorrow's visit is. Thanks for the input and support.

[just laurie]

Yea for your PCP! Hope tomorrow goes well with all the driving, tests, etc. Sorry you have to go alone.

Laurie

[Cherie]

9 hours from the time I left home till return and 202 miles on the car. Mammogram was excruciating today! Nearly passed out when they did the left breast. But the films from the last 16 years, confirmed that what looked abnormal is normal for me.

However, you can't diagnose IBC with either mammogram or ultrasound and today, the surgeon had 2 other docs , including the head of the Breast center, see me. None have ever seen IBC sooner than 3-6 months after symptoms began and mine only started on October 28. So now they're reviewing the biopsy slides with their own pathologist and want me back after the first of the year for an MRI guided biopsy unless all of the inflammation has cleared in the meantime. So we're back to being less usre it is NOT IBC than we were after Friday's visit.