Need Opinions Please

squidwitch42

I have been having a rough time after radiation, which finished the end of May. The extreme fatigue actually started during radiation, and they kept thinking it was the left over chemo effects...which were horrendous in their own right.)  My skin fared well, but my fatigue continues to get worse, and last week I felt feverish/flu like symptoms.  I had a crappy appointment with my Onc yesterday, where he implied this was psychological.  I just had a PET/CT scan that showed pleural thickening from the apex to the base, most concentrated in the apex and is seen anteriorly and posteriorly.  The area is hypermetabolic SUV 10.6.  I agree with him that this is most likely radiation related...the results read consistent with metastatic disease. So I am not up in arms over those words...but I felt soooo dismissed by my Onc!  I keep trying to advocate for myself, and get nowhere. 

I just feel like poo on a stick and wondering if this could be pneumonitis?  I decided to follow up with my Rad Onc and have an appointment next Tuesday. 

(just to make this whole thing more fabulous, I was trying to get support today from my Psychiatrist and he too questioned me...it got very quiet for the last 16 minutes besides me crying in frustration and embarrassment.)

Can anyone give me any answers/suggestion?

Thank you in advance,

Traci

Houndmommy

I don't have any words of wisdom on your situation. I am just chiming in to send you cyber hugs as you try to get this figured out.

 I will say I am soooo tired of the docs that dismiss us when we want answers or have concerns.  It is very frustrating and I don't blame you one bit for being upset!

Hang in there!  Hugs, Kim

changes

Hi Traci,

I don't know anything about pneumonitis, so can't comment on that. However, I think it's terrible that our doctors don't LISTEN to us. My radiation onc was the same way - kept telling me I was depressed (well, DUH I have cancer, yes I'm depressed!), but that had nothing to do with the fact my breast was swollen and you could have fried an egg on my chest! I met with a fill-in doc when she was at a conference, who agreed I had an infection and put me on antibiotics and steroids. I felt better within HOURS. I suffered two weeks needlessly. I am open to exploring psychological contributions to symptoms, but sometimes the problem is physical and they need to address it. If your doctor does not listen to you, it may be time to fire him and find a new one. At the least, he should be willing to explain to you WHY he does not think the cause is physical.

I'm sorry you have to cope with this, on top of everything. Hugs,

Karen

Houndmommy

I don't have any words of wisdom on your situation. I am just chiming in to send you cyber hugs as you try to get this figured out.

 I will say I am soooo tired of the docs that dismiss us when we want answers or have concerns.  It is very frustrating and I don't blame you one bit for being upset!

Hang in there!  Hugs, Kim

squidwitch42

Ladies,

Thank you for the hugs...I really needed them today.  Karenlen...that is just beyond unacceptable!  I am shocked that your MD thinks depression manifests as swelling and redness.  He should have apologzied profusely!

Houndmommy (my dog is curled up next to me but I'm doing the tickling   I agree about these MD's and it is so not the first time in my life....which makes it all the more upsetting.  Huge trigger for me. 

I'm so glad I can come here and not feel judged.

traci (hugs back)