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PET not so good

carolp99
Posts: 70
Joined: Aug 2012

Almost 1year in remission.  Had cat scans and PET.  The cat scans were good but the PET showed a hot spot at the base of my tongue .  Sent me next door to have bloodwork done (which came out fine) and set up an appt. wit an ENT on the 31st of this month.   Scared, depressed and mad.  Want to think everything is fine, but once you've had stage 4 cancer w/bone marrow involvement it's really hard to be positive.  Any one else have any knowledge about this?

Shoopy
Posts: 210
Joined: Jul 2013

Carolp99,

I am so sorry about your recent PET scan.  While my situation is completely different I do understand the scared, depressed, and mad portion.  Trust in yourself.  Trust in your doctors.  Most of all, Trust in God.  He is good and he will provide.

I've said a prayer for you!

Karl 

carolp99
Posts: 70
Joined: Aug 2012

It was my oncologist who set up the appt.  i would imagine to see if he needs to do a biopsy.  I trust my oncologist completely.  I don't think that he feels like it's the lymphoma.  I also had the orbital cancer when they discovered the stage 4 cancer.  I'm mad,sad and anxious all the time now.  The thoughts of doing treatments again scares me so, because I know what to expect now.  No one knows what you have to endure if they haven't gone through it.  That's why I always turn to everyone here,

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1001
Joined: May 2012

Carol,

I have no familiarity with what you are dealing with, but why see an ENT for what a PET shows is very possibly the lymphoma ? Personally, I think I would demand that an oncologist explain it. 

jimwins's picture
jimwins
Posts: 1975
Joined: Aug 2011

I'm sorry you didn't get such good news and I understand your feelings.  I tend to agree with Max as to an oncologist but I am not very knowledgeable as to ENT expertise other than the obvious. 

Hang in there and know you are in my thoughts.  Please keep us updated and come here and talk anytime you like and know we are here for you.

Big hugs,

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1001
Joined: May 2012

I have been reading a lot about prostate cancer lately, since one friend is about to die after a 13 year struggle with it, and another died five years ago, after 12 years.  Both initially were sent to urologists for over a year, who hee-hawed around with antibiotics and other worthless, stupid therapies.  By the time they got to an oncologist who could treat their actural problem -- CANCER -- they were both stage 4.   Another friend went to a urologists for bleeding in the urine.  The doctor devised a bizarre "scraping" treatment, which shaved the inside of the bladder.  He died of bladder cancer not long afterward....

Over the last year or so, I can recall a few people writing here who wasted time with ENTs.  Not ever their fault, just a fact.  I suspect that their cases are analogous to cancer patients who lose precious time with ENTS, who can treat an ear infection very well, but not NHL.

Two things I am convinced of on a personal level:  Do not go to a non-oncologist for what may be cancer, and never agree to "watch and wait." If I have a problem, fix it now. I have no interest in "waiting" until it is at a fatal stage.

I hope your "hot spot" is NOT cancer.

Bless you,

max

carolp99
Posts: 70
Joined: Aug 2012

Max,

i would never ever do a wait and see.  I'll keep the appt. and go From there.  Hoping it's just an infection.

 

carolp99
Posts: 70
Joined: Aug 2012

Max,

i would never ever do a wait and see.  I'll keep the appt. and go From there.  Hoping it's just an infection.

 

allmost60's picture
allmost60
Posts: 3150
Joined: Jul 2010

Hi Carol,

I'm so sorry your PET showed a hot spot. It's the one thing we hate to hear when we get scan results back. But...like you said, it may be an infection and nothing cancer related. I'll be keeping you in my prayers, you've been through enough already! Much love....Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

 

carolp99
Posts: 70
Joined: Aug 2012

Thank you and everyone else for their replies.

carolp99
Posts: 70
Joined: Aug 2012

Thank you and everyone else for their replies.

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I am glad your CT scan and blood work were good but sorry about the hot spot on your PET. I will be interested in knowing what the ENT doctor thinks about it. I am sure he will confer with your oncologist. Perhaps it is some type of infection; you didn't mention if you have any other symptoms.

You are understandably scared. I suppose after we've had cancer, we will always worry about our health (and so will the doctors who have cared for us).

Prayers and (((hugs)))

Rocquie

 

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