3 docs say no IBC, weird symptoms still lingering...

janejetson

I've chatted with a few helpful people from this site before who have really helped with concerns and information. It has been now 5 months since my original lymph node biopsy (negative) which triggered redness, swelling and peau d'orange on the opposite side of the same breast. That caused my surgeon to do another biopsy, he was quite concerned about it being IBC, this time a surgical skin biopsy on the edge of my nipple where the swelling was causing my skin to thicken. That biopsy too was negative for cancer, positive for a fibroid tumor. Of course then all doctors (I had seen 2, breast surgeon and obgyn) said "ah yes the swelling is the fault of the fibroid tumor, mystery solved!" And that was that. I came across an article that said that one skin biopsy was not effective in diagnosing IBC, of course this ups my anxiety because while my redness is gone I still have permanant thickened skin and obvious hair follicles In that area of my breast. I had one pretty large surgical skin biopsy (scar is almost an inch long)· While I have been under the impression of probable lymphedema, the doctors have adamantly disagreed or basicly shrugged. There are no lymph specialists anywhere near me. Not that I can afford it as all of these biopsies have pushed me into debt already, and such a mental toll should I be seeking a third opinion? My obgyn really tried to explain the fibroid tumor to me but I dont get why this would present this swelling. My surgeon explains that "its somewhere in there blocking things up." Does anyone have any thoughts on this?  

*update* Today I saw my GP who seems fairly well versed in IBC (as well as my surgeon who works in a breast specialist center and my obgyn), my GP strongly recommended that I don't have anymore biopsies on the area of my breast because of the possibility of lymphedema there. He suspects the skin thickening seems like scar tissue formation and not cancer. My redness has improved 98% in the past 9 weeks and otherwise no worsening of symptoms. (Same selling and dumpling) He agrees that the scar tissue there is quite bizarre, but he is Doctor number 3 to suggest that if my surgical excisional biopsy said no cancer it's not cancer. When do I start to feel okay with this? My finances cannot handle another single test but my mind is working overtime. Any thoughts or suggestions at all? I really would love to have some words or thoughts, it's a tough situation to be in.

alicki

hello,

More or less same situation here. 2 skin biopsies and two deep skin biopsies, one showed inflammation. 3 MRIs, 5 docs. Countless ultrasounds

However now have numerous fatty lymph nodes under my axilla. I have had to go as far as deciding to get a breast réduction for them to accept to do a Pet scan on me before the opération, (Friday)

The biopsies do cause scar tissue and upset things. However, one thing I have learnt is to trust your gut feeling. That's important.

Im not from US so if anyone could let you know where you can get more tests for free, that would be good. I'm been extremely proactive all the way but still find myself 5 months down the line with no official diagnosis as mastits

Keep going until you are satisfied with the result.

Take care ,

Alicki

janejetson

wow Alicki I cannot believe you are still dealing with this too. Im not sure my gut is trustworthy since ive dealt with health anxiety for years, but this situation does not help. Good luck to you please keep me updated on your situation.