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#192921 08-25-2016 12:39 PM
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My name is Tom and I am 56 years old. Have been fighting throat cancer for three years. I had 62 radiation treatments to my left vocal chord in Nov.-Jan. of 2013-14. The following year after a PET scan, my E.N.T. doctor told me that my voice box would need to be removed. This was done in Oct.of 2015.I recently had another PET scan done and awaiting to see my oncologist in two weeks. There seems to be a spot on my lymph node and may require chemo thearpy. I have not done chemo and I'm certainly not lookin forward to it. I have an eight year old daughter and it's been tough on all of us. I'm new to this site and have not been involved in any type of support groups, so I wanted to introduce myself. Any suppport is always appreciated.

Thomas P #192924 08-25-2016 04:43 PM
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Welcome to OCF, Tom! Im glad you have found our site! We will give you lots of info and support.

Waiting for test results is the worst!!! Keeping yourself busy will help you from worrying too much. After what you have already gone thru I can imagine you must be pretty nervous about the spot. Just keep repeating... sometimes a spot is just a spot.

Which doctor told you about needing chemo? What do they think the spot is? Was it new or showing on a previous scan as well? Im very sorry for so many questions!!! Im trying to understand your situation and why someone suggested a treatment plan before knowing exactly what is going on.

Hang in there!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Thomas P #192925 08-26-2016 12:14 PM
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What happened was that I sent my pet scan to my ENT doctor. His office called me and told me to take my pet scan to my oncologist (who treated me previously with radiation). When I got there, they made an appointment with the doctor for Sept. 12 The nurse looked at the hard copy of my PET scan and said that I would probably need a biopsy and could lead to chemo. However none of this has been confirmed. I don't think I'll have much more information until I see my doctor.

Thomas P #192929 08-27-2016 01:05 PM
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Thanks for clarifying everything Thomas! This now makes much more sense to me.

I would advise you to do your best to ignore the nurses comments and wait until you speak to your physician. Im sure the nurse meant well and was only trying to help but saying that to a cancer patient is devastating to them. Which doctor ordered the PET? Thats who should be reviewing it with you. A nurse is not qualified to give their opinion on the PET reading. Going to the radiation oncologist may not give you much info. Since you recently had rads, its unlikely rads would be an option. You may get sent to a medical oncologist (chemo doc) next. At this point, not much is known yet so to save further delays I advise start trying to find someone for a second opinion. That way you are prepared just in case you need further treatment. But please dont jump ahead of yourself, take it step by step. Right now you dont know if anything is even wrong. I suggest you try your very best to enjoy yourself, see friends and family, go out and do interesting things and live it up. Cancer and the unknown spot are like thieves, dont let the unknown steal away your time with excessive worrying. It only makes this even more difficult.

If its possible to select a comprehensive cancer center (CCC), that would be the best choice for a second opinion. At a CCC a team based approach is used so all the specialists work together to make the treatment plan. Its called a tumor board where the doctors get together and discuss each individual case. The patient is able to attend as well. The CCCs also attract the brightest doctors so hopefully this is an option for you.


List of CCCs

Best wishes!

Last edited by ChristineB; 08-30-2016 06:41 PM. Reason: added info

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Thomas P #192934 08-27-2016 07:29 PM
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Waiting for the next step(s) is the worst. If the news isn't good, I second the recommendation for a second opinion, preferably at a CCC. Meanwhile, take good care of yourself, especially eating and sleeping, to keep yourself healthy in case you need treatment. Keep us posted.

Thomas P #192948 08-29-2016 10:27 AM
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Welcome to OCF, Thomas. As the process is moving along, try to listen most to the doctors at this point in time. I found the nurses are a lot better at the practical aspects of managing treatment and such but the oncologists are the experts in diagnosing and recommending treatment plans. Good luck.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Thomas P #192950 08-30-2016 12:29 PM
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Welcome to this extremely informative and caring site. I second the opinion that you should set up a second opinion hopefully at a CCC. The nurse should not have said that to you, but please know that often a spot is just a spot. With what you have already gone through chemo would be much easier than the radiations you have endured if it were to come to that. Stay strong, keep your health up and please stay in touch with us.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Thomas P #192951 08-30-2016 01:01 PM
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Thank you for the info, I will look into a CCC.and also have an update Sept 12th. hopefully all will be well.


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