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PET/CT came back dirty

rmkbrad
Posts: 177
Joined: Dec 2009

Had my PET/CT this week, the doctors are concerened with the back of my tongue, they scheduled a biopsy under anistisia. To see if the cancer is dying or what. Then they will decide if I have another surgery. Makes me nervous if I can beat this beast.

Brad

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

How long since you finished treatment...(if I remember correctly you only finished up around the end or April, first of May), sometimes (usually frequently) if the first PET is less than a few months minimum, there is a lot of residual, scarring, damage carried over from the rads and chemo....

A lot of MD's consider not doing a PET for anywhere from 6 - 12 months just for that reasoning. Some like to do one earlier as mentioned on the forum as a baseline after treatment.

Just something that you might consider before you start to worry too much.

Good Luck and God Bless,
John

rmkbrad
Posts: 177
Joined: Dec 2009

I finished May 1 for my neck and May 16 on my esophagus. The doc said my tounge felt soft and good but the PET showed somthing.

Brad

debbiejeanne's picture
debbiejeanne
Posts: 2453
Joined: Jan 2010

brad, it may just be too soon. Many, many of us here have had our PET's come back dirty only to find out it was a false positive b/c it was too soon. Even tho trmnts have ended, the radiation is still in our bodies and that can make the scan show "positive" when it really isn't. Scar tissue can do the same thing. Please try not to worry about it for now, I know how hard that is, believe me. You will probably get a lot of responses like mine. Hang in there and let us know what you find out. We will be praying for you and wishng you the very best.
God Bless you friend,
debbie

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Brad,

I just this past Monday went through the same thing! Nothing was there and I think my Pet was done too soon. I think yours was too early also. Mine lit up in the area of the right tonsil. I'm no doc but I don't think you have too much to worry about.

Best,
Steve

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

way to early for it to be anything, Brad. Know you've been thru H---, but it's like a broken record with the first PC/CT= false-positive.

kcass

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Brad,

Agree with the rest of the Gang. It sure sounds too early to me. No matter what, sending positive thoughts your way!

Greg

Clearblue
Posts: 188
Joined: Apr 2010

Skiffin, dont know if u remember me.

Anyway, My wife just had a PETCT almost 3.5 months after surgery(MARH 2010) to remove scc hypopharynx, second time round.
THE pet came back "clean" except for little nodule on lung, which might be result of previouse surgery -lumbectomy NOV 2009.
Were very happy as she has Fanconi anaemia which precludes any chemo, so shes only on erbitux.

But after so much tension i cant help feeling that i should be taking xtra care.
Dont get me wrong, were happy and we deserve some rest after what shes been through but i wonder if there is any other test which could check a possible false negative?

or should i just shut up and thank G_D?
Clear.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Sorry for not answering sooner, I just noticed your post this morning....any other word yet? I don't really know any more than the others here concerning such. Have they scheduled her for any follow-up CT's as of yet?

God Bless,
John

blonde1
Posts: 8
Joined: Jun 2010

Brad
My husband had his first pet scan done on Thursday this week.
It also came back dirty. They told us on the phone that it was a re-occurance of the tongue
cancer that he was operated on for last November.
A lymph node has "lite up", the Dr's asst said it was like a "7" uv rating.
They removed 1/2 of his tounge and rebuilt it. He has done wonderful, gone thru chemo and radiation, just now feeling his old self, except for eating, still cannot eat yet...
then this comes up, I too am very worried, hope all of the folks on this board are right !!
Hope

rmkbrad
Posts: 177
Joined: Dec 2009

I hope it is nothing, the physical exam for me was more positive than the PET scan. Since I am a transplant patient and I was on immosuppresants for nearly 10 year the doc's said the reoccurance of cancer is high, but I have not taken any immosuppresants for nearly 3 months. My mother told me about a spice called tumeric and that it kills cancer cells, so I have started taking it. Best of luck and god be with you.

Brad

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hello, i have eaten turmeric in my currys for years, approx 50 yrs but i still got nose cancer. But here is a link which you may find useful. I am of the same opinion as others, ie that it is probably too soon to be talking about a recurrence. Good luck, heres the link from cancerhelp UK which is a very reputable organisation.
http://www.cancerhelp.org.uk/about-cancer/cancer-questions/can-turmeric-prevent-bowel-cancer

debbiejeanne's picture
debbiejeanne
Posts: 2453
Joined: Jan 2010

blonde1, i'm sorry to hear the news on your husband but you need to continue to hope and be positive. I can only imagine how you must feel. Fighting cancer once is hard enough w/o having to do the battle again. I am truly sorry and I will put you and your husband in my prayers with everyone else here.
God Bless you both,
debbie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

blonde1,

wishing for the best for hubby and you.

Hope it's not a recurrence, but please keep in mind that there are many with recurrences still with us. Another site I visit has several posters who've had multiple surgeries, removing tumors as they have "appeared".

Again, I hope it works out,

blonde1
Posts: 8
Joined: Jun 2010

Pam
Thanks for the advice...what is the other site you spoke of ??
Please read my new popst today, I am so scared mand upset....
Hope

train-nut
Posts: 101
Joined: Jun 2008

Keep an eye on things but try not to be overly concerned. Two years post treatment my scans still showed suspicious tissue. There wasn't any other evidence of cancer. Now 3 years out, no more scans only scopes. As my ENT said: the technology has expanded more rapidly than our ability to fully comprehend it. Suggest you follow up on it but try to stay positive. Best of health to one and all, Rich

rmkbrad
Posts: 177
Joined: Dec 2009

I have some biopsy's taken next week, now I am not recovering the way I had hoped. Still week and not much energy. The pain in the back of my throwt and left ear are getting worse, I don't get much sleep because of it. I hope they find somthing simple that they can fix nex Thursday so the pain will go away. My oldest son has been my hero, he helps me with everything now. I try to stay active but if I move to much after tube feeding I thow it back up. Just venting.

Brad

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hang in there Brad. I'm not healing the way I'd hoped either, so now I'm hoping for both of us. I remember a quote. I don't normally plague members with quotes, but I've always liked this one. It's from a 19th-century Danish philosopher whose name I would prefer not to try spelling at this point: "There is a world of difference between the proud courage that dares fear the worst, and the humble courage that dares hope for the best."
best, Hal

blonde1
Posts: 8
Joined: Jun 2010

Went to Dr today...Looks like my husband has a reoccurance within 2 months of completing chemo/erbutex and radiation. Tumor is now on opposite side of his neck. They did a bipopsy and a ultra sound today..They said it appears not to be involved with the the caroitod artery. Said we will know Tuesday the results of the biopsey.
I am devastated as is my husband and in shock, 2 months !!! After all of the chemo, radiation, how does this happen ?? They said it is a very agressive cancer and this does happen sometimes, not a good serinero from the Dr.'s, they are very upset also.
So............now they are talking another neck desection opposite. Don't know if he is even a candidate for more treatments a this time ! Finished treeatments in April 2010.
If we do nothing, maybe 6 months...PLEASE has anyone been thru this ?? My husband is in excellent health other than this accroding to the Dr.'s.
I am losing hope and faith....
Hope

rmkbrad
Posts: 177
Joined: Dec 2009

I am so sorry to hear the bad news, I am fearing the worst also. As I said I will have an endoscope and biopsy next week. The pain in my left ear and the back of my thought are getting to the point that I cannot function. The pain meds only work for a few hours so at night I am not getting much sleep. I pray to god that they can do somthing, I only had the tonsilectomy for surgery before starting chemo and radiation. So I will wait and see what they have to offer. Good luck and god be with your husband and family.

Brad

debbiejeanne's picture
debbiejeanne
Posts: 2453
Joined: Jan 2010

Brad, I will also be praying for you. You can make it thru this, just don't give up. It is an extremely hard battle but many have come thru it and so can you. Be sure to take care of yourself so you can be strong enuf to fight. We will all be praying.
God bless you,
debbie

debbiejeanne's picture
debbiejeanne
Posts: 2453
Joined: Jan 2010

Hope, I'm very saddened by your news and I want you to know that I will put you in my prayers. You know God has the final say in things so whatever the docs say, God will do what HE has planned. Please try to stay positive and take care of yourself as your husband is going to need you in good health to help him fight the C battle again. It will be hard, I know, but you can both do this. Don't give up faith or hope!! I and everyone else here will be pulling for both of you!!!! Please let us know if we can do anything for you.
God bless you,
debbie

blonde1
Posts: 8
Joined: Jun 2010

Debbiejeanne

Thank you for your post.
Mickey is having surgery today at 11 am 7/20/2010 @ Univeristy of Irvine Medical Center, Irvine, Calif.
The hope is that they can remove the lymph gland that showed up on the pet scan only months after chemo and radiation finished. It is a suv of 7, they did a bioposey and it came back SCC.
They feel surgery is the way to go.
Please keep Mickey in everyone's prayers and the Doctors also.
Other than this awful thing, he is in great health, hope and pray it continues.
I am trying to be strong for him but I am a mess, so guess prayers for each of us would help.
Thank you,
Hope & Mickey

debbiejeanne's picture
debbiejeanne
Posts: 2453
Joined: Jan 2010

You are both in my prayers. God bless, please let us know how he does.
God bless you, Debbie

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

You and your family are in my thoughts and prayers!
Stacey

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

My energy is with you and Mickey also.
Kim

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Hoping for good results and even better news....

Best,
John

backachedp
Posts: 124
Joined: Oct 2009

Prayers from us here in Minnesota....I know what you mean when u say u r a mess I was a mess for 8 month's....I was worse then my Husband..he held strong. I cracked...praying all will go well today. Please keep us updated.

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Get another option before doing anymore Rad or Chemo, I am 5 years passed the last treatment and still get dirty PET test, sometime it is only old leftover scar tissue. I have two teams of doctors one here in Lafayette and the other at MD Anderson in Houston make sure they talk together.

Take care

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