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I DESPARATELY NEED YOUR KNOWLEDGE - PLEASE HELP ME

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Group, I just got results from a PET scan and need your help.
When the doctor gave me the results he said, "the scan shows activity but maybe its just leftover radiation." I find that hard to believe and feel he is sugar coating the results. My family is thinking maybe it is swelling, tissue, throat irriation. Do you believe any of that could be true? Please give me your honest opinions as you are the only ones who truly know what I'm going thru. I have to admit I am scared to death! I go back to the ENT tomorrow and I will worry myself sick until then.
By the way, I was diagnosed with vocal cord cancer in Aug., did 35 treatments of radiation, with the last treatment being on 10/22/09. Been recovering since. I greatly appreciate your reply postings.
Thank you all in advance for your help and knowledge!
God Bless,
Deb

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

At this point I wouldn't worry unnecessarily. There is varying opinions between my doctors on how soon to do a PET scan after treatment.

My treatment was completed June 18th 2009. My oncologist setup and had me do a PET scan the latter part of August. For me the results were clean with no signs of activity or cancer.

My ENT feels this is too soon having the chance of residual junk for better words left over from healing and the effects or damage incurred from radiation.

I believe the "normal" period is probably somewhere between 4 - 6 months post treatment from most that I've read on this forum.

So that being said, there probably is a good chance that what he is telling you is true and correct.

John

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Debbie,

I don't think your DR will sugar coat it. If they really think it is cancer then they usually come right out with it. My husband finished treatment 9/21/09 and had his first PET on 12/31/09. They found "spots" in the chest area and they did not sugar coat it. They scheduled a biopsy right away and said they thought they felt it was probably cancer, which it was and now we are doing more chemo. So if they feel it could be something else then it probably is. I know how you feel but really just try not to worry too much.

Peace be with you!
Donna

train-nut
Posts: 101
Joined: Jun 2008

Deb,

Two and a half years post-treatment and I still lite up the scan. All my docs now write it off as scar tissue. Your're fine. Enjoy your good health, Rich.

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

John, Donna, Rich,
Thank you so much for your replies!!!! What each of you said makes very good sense and I do feel better. The ENT scoped me today and he didn't see anything but said my throat is still very swollen. He also scheduled me for a biopsy for next Wednesday at 2:30. Sooo, I will still be a little worried until that is over but I also know that God always takes good care of me. It sure is great having friends here who know what I'm feeling and unstand what I'm asking. Thank you again!!!
God Bless You,
Debbie

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Debbie, I also had SCC of the larynx (voice box) and finished my rads in August'09, after that I had targeted rads for the NSCLC in my left lung which I finished in Sept.'09. My ENT is still seeing swelling and some abnormalities on my larynx so he did another biopsy to make sure the cancer hadn't invaded the tissue of the larynx. Biopsy came back clean so I am still being monitored by my ENT each month. I would say the swelling after such a short period of time is normal.

Please try not to worry too much (easier said than done :) until you get the biopsy results, I'm sure you will get good results and find out that it is only scar tissue.

Take care and let us know what your tests results are.

Glenna

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hi Deb, I finished chemo and rads for BOT SCC back in October. Had first PET middle of December. Sure enough, PET showed uptake at BOT and in right tonsil. Needless to say, I was a little worked up. ENT can see nor feel anything, all looks good. CT scan normal as well. He confered with another Doc and together thay agreed that it was inflammation from rads. These areas surely received a huge amount as tumor on BOT was on right side. I am sure that my next PET will be better as this tissue will have had more time to recover. ENT appt. this morning and Doc said I am doing great. Once again, looks and feels good and he sees no reason to do anything except be vigilant. My oncologist says this of my ENT: He has never met anyone who hates cancer as much ENT does. I'm glad he's on my team. I'll go back again in month, do whatever he says. Another PET in April to be cautious. I have learned PET is not the be all do all but needs to be evaluated with all the other pieces of information that Doc's have gathered. Good luck tomorrow, keep us posted.

Mike

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Debbie,

Glenna brings up a good point I was going to mention and forgot. My ENT whom I feel saved my life at this point... looks at the PET as another tool, be it a very good tool. He feels that it's still good old hands on scoping, probing and personal observation that has the most creditability.

So if you trust in your ENT as I do mine. He'll be upfront and tell you if there's something that needs addressed. After all, it doesn't do him any good nor you to sugar coat anything. If it's bad he'll need to get started with a plan of action as would you. Again I'm sure it's probably too early to tell much from the PET. The biopsy will confirm any suspicions. If it comes back as needing addressed, you and he will work out a plan of attack...that's worse case scenarion. Best case and hopefully, it'll just be residual junk from your prior treatment.

It's perfectly normal to be concerned and worried. I'm several months out, but things that used to not bother me at all, something as minimal as a sore spot in my throat now worries me. I'm sure it will for awhile. But I try not to let it consume me as it easily could.

Let us know how it turns out, we'll be here waiting for good news.

John

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Your Dr has an obligation to tell you the truth. If it was dire news he'd need to tell you so you could prepare for that. His impression is just that. If this were me, I would call him and say to him exactly what you've said here. I do this often with my Drs and they reciprocate even though sometimes the news is not happy news, at least I know as much as they know.

Stay fighting Debbie and keep advocating for yourself, that's all you can do. Do not fear the Drs and hold them accountable for what they're doing and how it is affecting you.

NEVER GIVE UP, NEVER SURRENDER!

Warmly,

Mick

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

Like everyone is saying don’t get stressed out over it, I am 4 ½ years past my last treatment and every PET scan I do is also lit up in the same place. The Doctors at MD Anderson believe it to be left over scar tissue.

Take Cane and God be with you tomorrow when you see your ENT

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Thank you, Hondo!!!!!!!!!!!!!!!

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

My first post-treatment PS was 3 months after, as your's was. Could be on the mark- too soon, and maybe your Dr. is right. My Oto said he wasn't concerned with the radiology findings- that something may have shown under my tongue. He didn't say anything about residual rads, but did say the area in question is an area of false positives. You mention the 35 rads- did you also get chemo?

Debbie- rest easy. You've just completed treatment. The likelihood of anything showing so soon after treatment really is very small, and unlikely as a true positive. If anything, I would be suspect of the Drs., and PS "interpretation", if they say it is a definite true positive. The odds are overwhelming that anything which may have shown is nothing more than a false.

Believe.

kcass

frank10g
Posts: 37
Joined: Jan 2010

friends,
Do I have to have a PET scan after finishing treatment ? My doctor told me 6 weeks post treatment is the soonest I can have one but since it will give my body more radiation, a CT scan is probably enough. It is up to me. What is your advice?
Thanks,
Frank

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Frank. My Doc says 12 weeks after last treatment is the soonest. 6 weeks seems way too soon by that standard. PET is the 'gold standard' for checking for mets, so not sure what your Doc is thinking.

Best,

Mick

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I agree with Mick 6 weeks sounds way too soon your body is still cooking. I did a CT right after chemo was finish, but the PET was 12 weeks after.

Take care my friend

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I agree with Mick 6 weeks sounds way too soon your body is still cooking. I did a CT right after chemo was finish, but the PET was 12 weeks after.

Take care my friend

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Kent, no, I didn't have chemo, thank God. You know what I don't understand, if the PS is so unreliable, why is it being used? I read on several different rooms here how wrong the scans are. Well, we're talking cancer so why are docs using a tool that can take our life if it is wrong????? I don't understand why anyone in power like a doc would use this scan.
Anyway, Kent, thank you for your post. I love my new family so much!!!

God Bless Us All,
Debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Debbie, I believe the PET to be highly reliable. Again, it's just another tool, it should be used with knowledge and experience. I don't think anything probably is as good as hands on experience and knowledge inconjunction with such tools. It does lite up primarily as a result of high celluar activity in the tissues (it measures and looks at a lot of things other than just glucose). The tracer they put in you effects many things.

It lites up from high celluar activity which is characteristic of cancer. But it doesn't mean that everything that lites up is cancer. When I had my first, it lit up in the areas that I had cancer, but it also lit up in my lower stomach becasue I was having a bout with diverticulitus at that time also.

But anyways, due to the damage by radiation and the healing process the PET can pick up all of that stuff going on as well. That's why it's better or more reliable given time to get done "cooking" as HONDO says. Your body is still undergoing changes, healing, damage, scarring, etc..

From what my ENT says between the chemo and mainly the radiation, that my throat will have swelling, irritation, and a lot of diffrent changes for a good year after I finished the radiation.

JG

fsdman
Posts: 51
Joined: Jul 2009

Deb,
I hadNPC cancer. 3 months ago I got PET results(after 35 rad and 6 chemo ending 4/09)that showed a "lit up"lymph node on rt side. Drs werent concerned but scheduled another PET for Yesterday (Wed)Today I went to Oncologist and results were great! Lymph still lit but much less. We figure I ate too much sugary stuff before my first PET. This time I avoided carbs and sweets before the test.I know your fear. I only got the good news about 3 hours ago.PET scans areas which pick up glocuse(sugar). My whole family held there breath but my Drs were right-that being said,of course you will worry. Just dont let it control you.Best of luck.

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

fs, thank you for your reply. I just feel so much better after reading all the postings! You guys are truly my new family.
Had my scope and the ENT didn't find anything that worried him but has scheduled a biopsy for next Wednesday at 2:30. I can honestly say that since I've read all the postings from you guys, I am not nearly worried as much. If I think about it too hard I get a little scared but before the postings, I was petrified!! I have also remembered how much God takes care of me and then I know, I will be fine.
Thank you all again for helping me to feel better and look at this in a realistic manner!!!! You are all AWESOME!!!
May God bless each and everyone of you!!!!!
Debbie

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

That’s great news if your ENT did not see anything, I will continue to keep you in my prayers through your biopsy as well.

God bless and keep you while in his workshop

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

fs, I am very happy for you and the good news you got from the scan. I pray God will be with you and always give you good news. Take Care and God Bless.
Debbie

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

Debbie- you are most welcome in this family. Again, it's too soon for anything to show, so rest easy, girl.

Pet Scans are used because they are considered the best tool available, but they are far from exceptional. They are tests which utilize the interaction between radioactive isotopes and sugar-loving cancer cells- that is what they shoot in you the 45 minutes before the scan= radioactive isotopes and sugar water. If the interaction of the two in a specific place "shows", then you get a POSSIBLE POSITIVE. I almost regret spelling it out, but others have before this post, so it is known. The nuts and bolts of the Pet Scan test, thus, is not a definitive true or false- rather, it is just the best medical science can provide for us in the here and now, and any Positive should be regarded as a "possible" Positive, ONLY. With C, still, the only certainty is when a "growth" has become such that it is more easily seen. I'm not a Dr., but this is how I regard the testing available- they may be able to detect only "possible Positives."

My one and only post-treatment PS came some 100 days after my last rad. Of note- after each of the two Pet Scans I've had: I have an additional Cat Scan done within minutes after the Pet Scan. Neither Cat Scans involved a typical injection, though.

Debbie- Believe.

kcass

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Thank you very much, Kent. I really feel a lot better after reading all these posts. I cannot begin to thank all of you enuf for caring enuf to post. I think you are are awesome and I keep all of you in my prayers and thoughts. Thanks again!
God Bless You and Keep You Well,
Debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Glad we could share some light with you...it's a hard row to sew on your own. There's a wealth of information and experience in these forums from the others whom have been there, done that or currently going through it....

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Skiffin16, you are right, this site has given me all the questions I needed to ask and all the information I was needing. I don't think I would get thru this if it weren't for you and all the others here who help. Thank you so much for caring and sharing,
Debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Glad to be of any help Debbie.

It's my way for paying back for the knowledge, experience, support, and friends that I have gained as a result of this forum....

John

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

Do you have your next Pet Scan scheduled ?? You and I are on about the same time table. I "think" I'm suppose to have one this month, but no appointments have been scheduled. Just wondering.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

I don't have a PET scheduled. I do have a CT and lab scheduled for the latter part of this month.

I just had the port flushed, and the ENT scoped me, everything good there. I also just had an annual physical and he did a complete blood work up. Everything is good there, except my RBC and WBC are still just slightly below low normal. But both have improved since the last blood work late November.

Cholestrol, blood pressure, GFR and all are good and within normal ranges.

My oncologist will probably order a Thyroid test again I believe. I haven't had a problem and it was still in normal ranges last November, but it has been slowly creeping up over the last few labs (over a six month period).

I do plan on asking her about my next PET schedule, and also when she recommends having the port taken out. I know the port isn't a biggie, and they tend to leave them in for awhile incase of any complications...hopefully I won't have to deal with.

Let me know where you are in your post maintenance and schedule.

John

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

John, I don't have my next one set up yet. I had a biospy today and I guess we'll set that up after we get the results on Friday. I have to tell you tho, I don't have much faith in them as my ENT told me they are 50/50, 50% wrong and 50% cancer. I would think that in today's age the doctor's could come up with a more accurate tool, I mean we are talking CANCER!
Anyway, I wish you the very best and will add you to my prayers.
God Bless,
Deb

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

John, thank you again and I hope one day that I'm able to add recommendations/advice/input/support also. My memory is so terrible since my treatments that I am not able to remember much. It is really scary. I pray for all of us not only to be well but for the strength we need to make the journey. I will continue to do that forever for my new family!
God Bless,
Debbie

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Skiffin16, thank you again. As you know, we all need some light b/s like you said it is a hard road. I'm sure that like me, many, many others have used this forum to get us thur our journey or to keep us going thru our jouney. So, thank you and everyone who cares enuf to post here and help those who want and need it.
God Bless,
Debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

I'm glad to be able to at least provide you with my knowledge and experience. I'm just one of many here that are willing to share that with you and hopefully give you some comfort. It's very hard on you and your family and like many ordeals as this, nobody can relate or appreciate (funny word to use in this situation) what you are really going through as much as someone that has walked your path through this illness.

God Bless and hoping you the very best....
John

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Hi, gang. Just wanted to let you know that I won't get my results until Monday. I'm taking that as a very good sign.
God bless,
Debbie

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

We will pray you through the week-end

God bless and keep you

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

THAT'S WHY I THINK YOU'RE SOOOOOOOOOO AWESOME!!
God Bless,
Debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Attitude and faith are huge in fighting this disease....never let it win.

God Bless you girl, hang in there, you can make it and will....

John

Jan Trinks's picture
Jan Trinks
Posts: 466
Joined: Apr 2009

Debbiejeanne:

My husband did 3 inductive chemo treatments Dec '08 and Jan. '09. He had 35 rad treatments March- April 30 '09. They did a CT scan on June 5 '09 and it was good but ro said they were some elevations but nothing worrisome but he didn't have a pet scan until Sept. 1 '09 which was four months after radiation and it was clean and the ro said he wouldn't do a pet scan until 4 months because by then things would have cooled down! So I agree with everybody else; your doctor is probably right saying leftover radiation and I don't believe they would sugarcoat it either. Take care and God Bless!

Jan Trinks

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Jan, John, thank you both and after reading all these posts, I agree with you, it will be nothing! The people on this post have helped me to feel this way and I thank you very much, for caring, posting, and being there (I thank everyone). You guys couldn't realise how much you've help. I pray God will bless each and everyone of you.
God Bless,
Debbie

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

HI, gang. Doc just called and the results are NEGATIVE!! Thank you all for your encouragement and your prayers!!! I know it was the prayers that did it!!
God Bless,
Debbie

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Just this once I think it might be appropriate to open some champagne. Great news.

Warmly,

Mick

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

Thank you, Mick, I agree!! Trouble is I don't have any. Oh well, I'm high on the news...lol. Thanks again!!
God Bless,
debbie

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Great news...Faith, Family and Friends....

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

Great to hear, Debbie Jeanne. Keep going strong.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

What great news!

--Jim in Delaware

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

Great news!!!! So glad for you. I second the champagne!!! Here's to continued success.

All the best,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

How nice to read good news from a fellow survivor!

Blessings!

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

News everyone of us can appreciate, bigtime, Debbie. Happy for you.

kcass

ygfilart's picture
ygfilart
Posts: 11
Joined: Feb 2010

I'm so glad you're ok deb. Just continue to eat healthy foods and be happy always. Don't let stress get into your system.

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I am not sure why but I just can’t get enough of good news like this.

God bless you Deb

pk's picture
pk
Posts: 192
Joined: Aug 2009

great news - Keep on keeping on. PK

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