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Please help us interpret PET scan results

PA_grandma
Posts: 48
Joined: Oct 2010

My husband has Stage 4 Hodgkin Lymphoma. He has received nine treatments of ABVD. Last week he had a PET scan and we were anticipating a report from his Doctor today, but unfortunately... he's on vacation. The Doctor DID call us last evening and said thing looked 'good'.

Just did a brief google and read a JAMA article on the subject of PET scan reliability to determine results of chemo.... there seem to be three results called...Complete, Partial & Progressive. Complete - with 78% survival after 3 years

John's report said COMPLETE metabolic response of multiple previously described foci of hypermetabolic malignancy!

His lungs are still affected which Doctor believes is a reaction to the chemo. There was discussion about possible steroids.

Can anyone add to this information. He'll receive his 12th and final chemo on his 80th birthday... so an extra three years would be WONDERFUL.
Thanks
Joyce

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I would take it to mean that there was a complete response to several areas they were focusing on that were thought to be malignant. In other words it looks like they got it! I don't know much about the number of years but that is good news. Congratulations and God bless. Mary

phb0808
Posts: 2
Joined: Mar 2011

I agree with Mary. Your husband's PET scan sounded favorable. Don't put too much stock in anything you read on-line that gives a time frame for any disease----they are just not accurate and every person responds differently. I personally know people who have lived and are still living far longer than anyone would ever have predicted with their disease, yet others who passed away far sooner than any doctor would have guessed. It is all about attitude, so stay positive and I'm sure your husband will have many more years left!

Zarx
Posts: 4
Joined: Mar 2011

My doctor always said my PET scans looked "good" when they were. Good means favorable results to the chemo and that it is working. I was also a Stage 4 patient. Im a year and 5 months now free.

PA_grandma
Posts: 48
Joined: Oct 2010

Thanks for taking the time to reply.

It is hard to wait for results. My husband is only seeing a Nurse practioner during his current chemo treatments...and she doesn't wish to interpret the PET scan results. We will have to wait until April 15th to see the Doctor, face to face.

In the mean time, I'll try to think positively...good means good! At our age, any extra time is a bonus. ~ Joyce

miss maggie
Posts: 929
Joined: Mar 2010

Hello Joyce,

I have never heard of a patient waiting so long for results. Whenever I have an appointment for a pet scan, I make sure my appointment with my doctor is soon after. On the day of my appointment, I see a nurse practioner first. The nurse is kind enough to tell me a little about the scan. Then the doctor comes in to tell me the results.

You must be more aggresive and assertive. Call your doctor immediately and get the results.

Good luck. Please post when you find out. Love Maggie

PA_grandma
Posts: 48
Joined: Oct 2010

Yes, it is frustrating, Maggie and a situation that I hope never occurs again. It is VERY complicated...and I'll TRY to be brief.

The Oncology group has 12 doctors at three locations.
'Ours' services the office closest to us only on Fridays.

Friday 3/11 - PET Scan
Friday 3/18 - 9th Chemo (Doc on vacation) treatment at distant office (Nurse practioner)
Friday 3/25 - Not our scheduled day, but called local office to try and see Doctor briefly. Office closed (expansion/construction)
Friday 4/1 - 10th Chemo - Local office closed (construction) must go to distant office and Doctor not 'there' on Fridays
Friday 4/15 11th Chemo - MAYBE we will have a face to face. When (if) we do, I will express my disappointment with this scenario.
~ Joyce

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Joyce,
You have to get assertive with these La-di-dah A$$holes. They just go about their day waiting for quiting time and in the meantime you are left pacing the floor.Thats over 2 weeks away you have to wait. They talk about overhaul. This is where the overhaul is needed. A great many of these so called health professionals walk around with their noses in the air with that "Holier Than Thou Attitude".Let them be a few dollars short on that paycheck and watch how normal they all of a sudden become. Sorry to sound off this way but its all you can do at this point. John(FNHL-1-4A-5/10)
(Just got to thinking after my last post about an hour ago.)

PA_grandma
Posts: 48
Joined: Oct 2010

You made me smile, John...

Yes, when we go for our chemo appointment this Friday, I will not leave until there is an immediate meeting scheduled with the Doctor..

Thanks for your 'push'. ~ Joyce

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Joyce,
That a girl.SMILE :) If they give you any crap just jump up grab them by the throat and yell,"Whats my Name and I don't repeat myself",then growl real loud. LOL John

miss maggie
Posts: 929
Joined: Mar 2010

Dear Joyce,

Is there a way to call the office before your scheduled appointment on Friday.
Tell them you expect to see and have a meeting with a doctor. Give them notice what
you expect.

I suggest to you to be assertive and aggresivee. In a nice way. Never be nasty. Tell the office how you feel. But, remember, you get better results with honey rather than vinagar.

I will think of you on Friday. Love Maggie

PA_grandma
Posts: 48
Joined: Oct 2010

Maggie,
My husband's Doctor is not scheduled to be at the office location where we have our chemo so there would be no possible opportunity to meet with him.

I tried calling to schedule an appointment anytime/any office... with no luck. I'm hoping that a face to face request with someone (there must be 30 employees) will make a difference. And yes, I WILL be polite, and will post the results late Friday. Hope your thoughts about us will make an impact. ~ Joyce

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Joyce,

I agree with Maggie. I would let the office know that if they can not get you in to see the oncologist within a week after a test that you would be available for a phone conference, at the oncologists' convenience. In my opinion,anything less than that is absolutely unacceptable. The stress of waiting to hear results leads to an increase in anxiety and a decrease in sleep; which counter-acts the healing needed to get well.

Kellie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Kellie,
I guess you don't agree with my method,huh? LOL John(FNHL-1-4A-5/10)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

I certainly do not disagree. I've had to use that tactic as well. I'm not sure that everyone's up for it! Keep making me laugh! Kellie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Kellie,
I was only funnin' with you,but I have found that tactic is the only way to go sometimes. I learned to be that way a long time ago when I see I am getting the runaround. It helps bring the high and mighty down a notch or two. John(FNHL-1-4A-5/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Joyce,
As long as he says good,then you can feel like there is no progression. I would interpret it as everything is going as it should. Let us know what your vacationing Dr. has to say when he or she gets back. John(FNHL-4A-5/10)

pandahugz77
Posts: 17
Joined: Mar 2011

I only read the results to one of my scans and that was the one in September when they found the spot on my lung. Before then and since then I have always let them tell me so I really don't know. I know the one in February showed an abnormality in the lymph nodes in the left/front side of my neck. Never heard the words complete or partial or anything like that before. I know I was told that I was in remission after 10 treatments in November of 09. Waiting to get the results from my surgery from yesterday. I'm hoping when they say you are in remission that you have more than 3 years, but anytime is good. Good luck to you. I was also diagnosed with Stage 4 Hodgkins Lymphoma in February of 09 and like I said was said to be in remission by November of 09. They found a lump which was a direct result from the PET a month earlier. Had the surgery to remove the lump yesterday and it went well. Came out without any problems. Should have results sometime tomorrow or Thursday.

Again good luck to you.

PA_grandma
Posts: 48
Joined: Oct 2010

I hope you have good results and will let us know ~ Joyce

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