Docs not listening....need advice

grejulian

Docs not listening....need advice

grejulian

Hello all of you brave ladies!  I need help.  For the past 9 months I've experienced pain in my right breast and underarm with swollen lymph nodes.   After seeing my GYN who dismissed it - my PCP ordered the dx mamm. (i have been getting mammos regularly for years and was due for my screening anyway).  Long story short they identified DCIS - 2.5cm at 10:00 position after a stereotactic bx, and excisional bx.  my BS indicates that this dx would not cause pain - and they say it is not in my lymph nodes as they did do an MRI which showed no lymphadenopathy.  both the Surgeon and the Radiation Oncologist indicate that the painful and swollen lymph nodes are due to the 2 biopsies i have had in the past couple of weeks. - however - i have told them that this has been a problem for 9 months.  I do have an appt with a medical oncologist next week for another opinion........has anyone gone through anything like this?  I just want to make sure no one is missing anything.  Could there be a mass in my underarm that is not identified on Breast MRI/Mammogram etc?

proudtospin

I have been having pain in the boobie of late, just had a mamo earlier this month, junk found on the mamo so meeting tomorrow with the BS to figure out my plan as I went through standard lumpies, rads and now the hormonal therapy

I was reading the report this morning, seems one of the things on my mamo is a cyst, when I google cysts it seems it can be an infection that occurs after surgery

 not sure if this helps, the cyst did show on the mamo, did you happen to have any?  I would think the onco would be the one to ask as they will have your files

1Athena1

grejulian,

I'm sorry that you find yourself not being listened to by doctors - all too common, and a sign to seek a second opinion, as you are sort of doing with the med. onc. The answer to your last question is no - not with 100 percent certainty, anyway. It is very common for cancers to be presumed DCIS at dx (even with biopsies) and then be found invasive after surgery. Surgery is the only way to know with 100 percent certainty what is going on with your lymph nodes, assuming that the surgeon is good at his job.

BLinthedesert

grejulian, I don't know how old you are, but there are a couple of non-cancer related reasons you could have lymph node and breast pain ... if you have not gone through menopause yet, and have dense/cystic breasts these kinds of pains could be due to fibrocystic changes due to hormone changes.   I never have pain in my breasts before, and for the past year they have been cyclicly painful.

My lymph nodes definately got swollen after my biopsies and lumpectomy (I had a "mass" too and it was at 10:00) - I attributed it to the inflammatory response to the surgery.  I just finished radiation and it already seems to have gotten a little smaller (though I have new and improved breast pain now ;-) ).

It would be low probability that MRI would miss a lymph mass (though not 100% in the 99% unlikely range) ... MRI is pretty sensitive, especially for invasive cancer, which would be what it was if it were in your lymph node. 

Good luck to you!! 

grejulian

Thank you to everyone.  it sure is frustrating to be told that this is due to something in the past couple of weeks yet it started months ago.   And yes - i do believe my surgeon is good at what she does - she does specialize in breasts and not just general surg.  I do not believe the pain to be cyclic - i am 46 years old and premenopausal.  And no cysts in Mammo - just 2 areas of calcification - had the stereo bx that showed ADH and the exicisional bx that revealed DCIS.    1Athena1 - i agree that the lymph node dissection is the only way .  I will be having a re excision for clear margins and will ask for them to check these lymph nodes.  I am hoping that the med/onc will have some insight as to what it is.  it is about a 4 on the pain scale - and has been for at least several months on and off.....i will let you know what is decided/what is found.  Thanks all

bevin

Hello, I assume once your tx plan is under way, you'll have a lumpectomy and a sentinal node biopsy which is pretty standard for DCIS.  Its rare to have Lymph involvement with DCIS, but you could have micro invasion and be truly Invasive, they may not have picked up the sample through biospy of invasive cancer.

If you are not comfy with doc though, I'd go get another opinion.  You definately want your surgeon to do the sentinal node bbiopsy during your surgery.  This I believe is NCCN guidelines.

Good luck to you and keep us posted.

grejulian

Thanks Bevin! I am getting an opinion from a med/onc on Mon. Surgeon maintains that MRI shows no lymph node involvement....but will discuss with a very trusted oncologist. I am wondering why they are not suggesting a sentinel node bxs along w the re excision....will let u all know!

BLinthedesert

Sentinal node biopsy is not standard of care (per NCCN guidelines) for DCIS unless you have a mx. Pure DCIS does not travel outside the ducts.

dlb823

grejulian, did you find out anything further when you saw the onc?  From your above posts, it seems like the swollen nodes -- since you've had them for months -- bear further investigation.  And did they get all of your DCIS with the excisional bx, or will you need more surgery?  If no additional surgery, did you have clean margins and did your path show only DCIS?  As you may know, it's not uncommon for a bit of invasive bc to be hiding within an area of DCIS, to be discovered only during pathology.  

Also, is your surgeon a breast surgeon or a general surgeon?  As anyone who had read any of my posts and my bio knows, I strongly favor seeing a breast surgeon, especially when you have nagging, unanswered questions.    Deanna

SpecialK

Hate to tell you but pre-surgery MRI missed my positive lymph nodes - one of them was 6mm, so it is possible for them not to be detected.  If you have pure DCIS on pathology is it possible that you have a mastitis, and an infection is aggravating your nodes and causing pain?

MondaysChild

Pre-surgery MRI and PET/CT both missed my lymph node involvement, also.