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Need oppinion-biopsy now, later or never???????

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

I have now been physically examined and scoped by my ENT, Radoncologist and surgeaon. None of them can see anything abnormal in my mouth, throat, tongue etc.however a small spot that came up hot on my PET has the tumor board concerned. They gave me a choice: 1) monitor the spot with another PET in 3 months or 2) biopsy now. Now here is the new wrinkle-because I hyave had radiation twice on both sides of my neck, they say there is a chance that there can be complications with the healing of the biopsy including infection, no healings etc. because of the ravaged condition of the tissue caused by the rads. I am 4 months post treatment and my throat is torn up now. What do you think---biopsy now or wait?

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

OK I will be no help with this one. I just want you to know I will be praying for you. That sounds like a terrible choice to me. I am sure others on this site may have great recommendations.

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

the question is, what would change if you had bx results? If you had a bx, and it was positive for cancer, would they be able to offer you anything but paliative chemo? Not being comfortable with your situation, I dont want to answer this for you, but it is one of the key questions. In the last few days, are your symptoms any better, and are you still on antibiotics? if this is abscess rather than cancer, it has to resolve. Otherwoise the problems continue. Sitting on a situation of my own that is a little similar right now. You have mail.

Pat

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

I was dx with stage iv cancer of the rt tonsil with 1 lymph node, last July, rt tonsil removed, I did 3 sessions of carboplatin, taxatore and 5fu every 21 days from aug to oct. nov 1 I started 7.5 weeks of rads including 1 weekly infusion of cisplatin..all treatments ended dec 31. Clean PET scans in March & June 2012. Why I'm telling you all of this is because late jan / early feb I noticed a white spot on the left side of my tongue, it was not there prior to or during any treatments. I think once we have a cancer dx everything becomes suspicious to us...I asked my onco, she said have ENT look at it, my rad doc also looked at it, I asked all 3 could it be cancer..no,no, no was what I heard. I persisted with the ENT, he said it could be thrush, gave me antibiotics, 6 weeks at next visit he says to swish with magic mouthwash, I'm now into may and he tells me if it's not gone by the time he sees mr again in June he will do a biopsy. Keeping in mind I already had a June 2012 clean pet, he does the biopsy and bingo it comes back scc...how I ask after all the tx stuff I had. Turns out this is a new site, so small that neither recent scans picked it up, docs all say that's a good thing and also had nothing to do with orig primary of my tonsil. June 19 went for some out patient surgery to remove spot, so far so good. Had a pet scan yesterday, now it's a waiting game for results. My point in this long drawn out post is be proactive, you have to do whats best for you..if I had a vote, I'd take the biopsy route. If I hadn't persisted with my docs for my own piece of mind, I don't know what the outcome would have been with the spot on my tongue.

Blessings for you on whatever course of action you take.

Linda

osmotar's picture
osmotar
Posts: 956
Joined: Jul 2011

I was dx with stage iv cancer of the rt tonsil with 1 lymph node, last July, rt tonsil removed, I did 3 sessions of carboplatin, taxatore and 5fu every 21 days from aug to oct. nov 1 I started 7.5 weeks of rads including 1 weekly infusion of cisplatin..all treatments ended dec 31. Clean PET scans in March & June 2012. Why I'm telling you all of this is because late jan / early feb I noticed a white spot on the left side of my tongue, it was not there prior to or during any treatments. I think once we have a cancer dx everything becomes suspicious to us...I asked my onco, she said have ENT look at it, my rad doc also looked at it, I asked all 3 could it be cancer..no,no, no was what I heard. I persisted with the ENT, he said it could be thrush, gave me antibiotics, 6 weeks at next visit he says to swish with magic mouthwash, I'm now into may and he tells me if it's not gone by the time he sees mr again in June he will do a biopsy. Keeping in mind I already had a June 2012 clean pet, he does the biopsy and bingo it comes back scc...how I ask after all the tx stuff I had. Turns out this is a new site, so small that neither recent scans picked it up, docs all say that's a good thing and also had nothing to do with orig primary of my tonsil. June 19 went for some out patient surgery to remove spot, so far so good. Had a pet scan yesterday, now it's a waiting game for results. My point in this long drawn out post is be proactive, you have to do whats best for you..if I had a vote, I'd take the biopsy route. If I hadn't persisted with my docs for my own piece of mind, I don't know what the outcome would have been with the spot on my tongue.

Blessings for you on whatever course of action you take.

Linda

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I think that's going to come down to your decision....

I'd presume that someone on your Team, would have made their recommendation? If you trust your MD's do what they suggest would be my decision. if the chioce was up to me, I think I'd opt for the biopsy..

Not sure why they feel after four months that your body would still be having infection and healing issues. I'd think those would have been recovered enough by now, unless you're having some other issue.

I know there can be complications with that concerning teeth extraction and blood flow, especially to the lower jaw, haven't heard anything similar to your situation before though.

I presume they are doing routine blood panels and such.

Anyways, like Linda mentioned, I'm always one for the pro-active stance, versus re-active.

Good luck on your decision,
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

There should be data to answer your question. How often does the hot PET lead to a positive biopsy? How often are there complications? But such hard data is hard to come by. The fact that your healthcare team has not given you a strong recommendation, it means the data are absent or conflicting.

In the absence of data, I would advise you to listen to your own body. Go with your feelings. Whether those feeling come from deep parts of your brain or from spiritual guides, they may be the best advice you can get.

I've had a total laryngectomy sandwiched between two rounds of radiation. My team is not evening scheduling a PET until 8 months post treatment. (The lag may have as much to do with insurance as medicine.) Nevertheless at 4-months, I would have refused a PET since I could not face another round of chemo/rads. But now at 7 months, I am anxious for the PET. "My body" has changed its opinion as the healing process progresses. Rick.

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