Had my first post Tx PET and it was clear - why don't I feel better about it?
SqCC HPV + (primary base of tongue, 1 lymph node in neck) Stage 1. Tors in August, completed chemo in late Nov & rads in early Dec. Got though it w/out a PEG and lost 30 lbs.
Am doing PT for my right arm and overall conditioning. I'm now able to lift my arm straight up from the prior 90 degrees. Went for a 2 mile walk yesterday. Osteoarthritis is worse - the blood thinner i'm on has this as a side effect but the doc doesn't think it's connected. Mouth is dry and I don't have all my taste back. In the scheme of things these are all very minor.
My PET scan on Monday was clear & the ENT scope on Thursday was clear as well. CT in 6 months. So everyone is happy for me, but I'm not feeling it. Of course this is the best possible outcome of the tests this past week but I'm feeling very cautious about it all. I know there are many more scans and there is the 2 year mark and the 5 year mark. (the chemo doc said that the rad may cause thyroid cancer & the original cancer could return in the lungs or skin when I asked.) They gave me 90-95% survival rates when I started.
I'm a bit stressed with my docs. My rad doc and his group left the Cancer center where they had been working for many years and started their own center. I've choosen to follow him - he know me and they have way more experience then the ones coming in. The chemo doc's role was to end after any chemo related issues were resolved (they are) but now says he want to follow me for 5 years. That is confusing and I'll have to follow up on that. My ENT doc (not the one who did the TORS) is a really good guy. He recommended the CT scan in 6 mths and the chemo doc said I don't need one for 12. When I called the ENT office to ask them to put in a referral to my insurance company I was told to have my rad doc do it. sigh. Seems they all have a different opinion.... Again at the end of the day these are manageable issues, just wish it was a bit smoother.
So I'm curious about how to manage the long term post tx process? Anything that has worked for you or not worked?
Thanks,
Jim
PS. 2021 was a really difficult year. In addition to the cancer there was the chaos in DC in January, covid, and I had 2 brothers die. I was responsible for one of them, he was delusional, lived in a shed and had congestive heart failure, the other was in a nursing home and was a cancer survivor (colon & skin); he had covid but it didn't seem to be a major factor in it all. His body was just worn out.
Comments
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Yes,this IS a tough one to work out. 2 year post Opp. I was given a 5% chance of surviving.
I MADE IT!!!!! Completely clear scans and MRI’s after the esophagectomy.
But there are challenges. I have scaring on my lungs and heart. I’ve had a double bypass,9 months after the esophagectomy. I’m on 3 inhalers.
Im alive! I was a fit 260 lbs at the beginning of this journey. I worked out,nothing major,after all,I AM 68! I was at my lowest 172#’s. I’m now at 200#’s,and this is where I’ll be from now on.
the most difficult thing to wrap my head around is the “New Normal”. No more 350# bench press!
Good Luck and God Bless!
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Your Doc never should have said what he did about thyroid C and lung- that's BS. I had 68 Gys to the base of my throat, have the typical body temp thing, still, and I'm over 13 years out to the good. You should have replied to your Dr. when he said that, "Oh yeah? And you could get rear-ended by a Semi going 60 MPH on your way home." "Secondary" Cs do happen, but to my knowledge we are only at a slightly higher risk.
The first PET/CT is typically only for the purpose of reference for future scans. Something showed on mine, but my ENT said it didn't concern him. In fact, anything that does show is likely scar tissue buildup, or some such- a false Positive. The only CTs I had post-tx were the ones immediately after the 5 PETs I had done.
As for going forward, just do your best to take everything in stride with the Rads that keep giving, or live the life you've been given a 2nd chance to.
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My friend, I think part of the reason is you have been through a significant health battle that includes an emotional roller coaster, from the time of hearing “I am sorry you have cancer” all through this experience till the very last radiation, has been filled with appointments and a daily struggle concentrated on getting to where you are now. You have been exposed to a wide array of medical terms and treatments you never dreamed you would be involved in.
Then suddenly you are done with treatment and it is a little confusing, instead of thinking about the next treatment suddenly you are done, the schedule is all yours again. Your days are yours till the first follow-up. Believe me, we are glad to get done but I think we are also in a bit of a fog. Our days are no longer laid out for us.
And now we have time to think and the questions come into our mind wondering about all kinds of stuff related to our recent battle. Is it really gone, can the scan be right? Well, sure it is so relax and enjoy the fact that you don’t have that cancer threat hanging over you anymore. Let yourself go and relax and enjoy life, this is what you did the suffering through treatment for.
But I think once you have cancer and go through the treatment cycle you are never quite the same again regarding cancer. Especially when you are first done any aches or pains, you think right away is cancer back?
Don’t think ahead to more scans, the next scan, the 2 year mark, 5 year mark. Just live each day as the blessing it is to you.
I can say some of what you are going through and thinking most of us have done the same thing. And I think with this H&N cancer especially it is just a little different than a lot of other cancer areas because it and the treatment affects our vital area that everything goes through as far as food and breathing and our speech process etc. I personally lost confidence for awhile afterward about doing things like repairs I normally had no problem with or new challenges, it took a bit to let myself get back to some sort of normal.
You will go through a whole host of emotions and ideas and you are not alone.
Here is a link to check out.
https://www.cancervic.org.au/living-with-cancer/life-after-treatment/understanding-your-feelings
Take Care-God Bless-Russ
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Hey Jim,
For gosh sakes, Be Grateful for a clear PET scan! It doesn't get any better than that.
Just look at where I am.... In Hospice with metastatic cancer and now pneumonia again. Hmm, what do you think MY latest PET scan looked like? Then, they decided it was not detailed enough so they ordered a CT with contrast after the PET. Not a good sign, I knew. That's when they saw the whole thing. By then, it had spread to my epiglottis, down my throat, and its taken out my speech completely now. I cannot produce any voice/ speech. Just this Airy type noise...... Cannot swallow either without my throat throwing it backat me.
Please be grateful, go out and Celebrate!! Live it up!! This what your Medical Team was working for, to achieve this with you. Don't let it go to waste . Be thankful .
Crystal, in Hospice.....
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By the way, this new cancer reached / invaded my Larynx a couple week is ago and on a single weekend, my voice ended and so dif my ability to swallow my oral liquids. All at one time, both were gone . I knew then what caused it ... I kept my cool though and Monday I let my MO, my RO and my surgeon know. . This happened before my recent admission, through the emergency dept. And then going in hospice care....
Live your Life, Jim. Live it Every Day.
Crystal, in Hospice......
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Thanks everyone for your thoughts. I've been thinking about what everyone has said a lot. I'm looking at the link you provided Russ, thanks very much.
Crystal, I actually thought of you when I posted my question to the group and almost didn't post. I see how good I have it and how grateful I should be (I am grateful but still struggling) especially compared to your situation. I wish you peace.
Logan, your note "....live the life you've been given a 2nd chance to" really struck me. Thanks for this, I think it will be one of my mantras going forward.
There are no guarantees when it comes to getting cancer or other diseases. Would a better diet and better exercise have prevented this? Maybe - maybe not. Going forward, the same question will a better diet and better exercise keep me cancer free? Maybe - maybe not.
Peace to all,
Jim
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When Treatment is Done Why aren’t we Elated
I think one of the biggest ideas people have about cancer treatment is that when treatment is over the person is done and everything is OK now so let’s just forget about it and move on. I wish it worked that way. I can’t speak for others that went through cancer treatment but H&N cancer treatment is I feel a little more difficult than most. Many times it involves a feeding tube and maybe a port or PICC line
The treatment itself is brutal with radiation and chemo assaulting your system and having effects on major daily functions like eating, breathing, swallowing, talking, etc.
And the recovery is a long one and can be up to a year or sometimes more.
You know Jim ever since you posted this and I answered I have been thinking about it. I just feel there is more to say that people can relate to. Here is a link to explanations of the different stages we go through when we find we have cancer I know I have experienced a lot of them.
Also, many of us have some form of depression, demoralization, anxiety, or maybe post-traumatic stress. Here is a link covering these situations.
Also, I am going to post some videos and people can take what they get out of them. I relate to some of these people personally and for others, I see in them a friend or relative that had cancer. Anyway, when one person has cancer it touches many lives around it and changes people and ideas because none of us leave the cancer experience the same as when we started. You can see and relate to the heaviness and emotional toll this disease takes on us through these people in these short videos, some only a minute long. The good news is there are a lot of positives in the mix too. Some of the videos are not necessarily H&N cancer but the concept and feelings are the same.
Feeling low or depressed after treatment ends is common. Cancer survivors often experience worry, fear of recurrence, or periods of feeling down, for months or even years after treatment. Some people feel sad or depressed because of the changes that cancer has caused, or because they are frightened about the future.
What happens after cancer treatment is over?
When treatment ends, you may expect life to return to the way it was before you were diagnosed with cancer. But it can take time to recover. You may have permanent scars on your body, or you may not be able to do some things you once did easily. Or you may even have emotional scars from going through so much.
Lost in Transition
What Does It Mean To Be A Survivor
With Love, Me
Mark's Story
The New Normal
Kristi's Letter - Head and Neck Cancer
Patrick's Letter - Melanoma
Ken's Letter - Lung Cancer
J.B.'s Letter - Melanoma
Trena's Letter - Melanoma
Biggest Emotional Challenge
"Just never give up"; a message from a cancer survivor
Throat Cancer Survivor Is Grateful For A Second Chance At Life
Surviving Oropharyngeal Cancer
The Caregiver Balancing Act.
Head and Neck Cancer: A Survivors Guide To Managing Treatment
I hope these videos and this post is helpful in some way.
Wishing You The Best
Take Care-God Bless-Russ
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Jim
I second what Russ said. You are still healing and just took your first sigh of relief with your first clear scan. After a full neck dissection I compared my radiation treatment to Bill Murry's Groundhog Day. I did my sleeping (if you can call it that) on the reclining sofa because I couldn't sleep in bed. About 4:00 AM I would take my oxycodone and leave with my wife at 9:15 for my approx. 1hour and 15 minute trip to Philadelphia. I would get zapped while doing my best not to think about the machine circling my head and frying my throat and saying one less time I have to go through this hell. We would hop in my truck and I would drive back home. (my wife doesn't drive outside Beks County nor on any road bigger than two lanes) Twice on the PA turnpike my wife had to wake me up. Once we made it home it was time to take more oxy and sit on the sofa nodding in and out. For 30 days this was my regiment and I couldn't wait for it to end. Once it did I was lost for a while for two reasons. 1. I couldn't believe I made it through it. 2. Now what? I wasn't sure what was next because my life was run by cancer for so long I wasn't sure how I was suppose to get back on track.
I don't agree with Login in thinking the doctor should not have mentioned thyroid and lung. My cancer actually did do an encore performance in my right lung 8 years later but that treatment was a walk in the park compared to the throat cancer. The only thing my surgeon ever told me about the future after surgery was I was going to go through a couple of months of royal hell. I wanted to know what was ahead and I didn't want it sugar coated.
Presently you're learning to live with the new you. One of my friends who use to frequent this site said it best in that we had to learn to live with the new normal. Because we are abinormal. I do know I have no desire to allow cancer to control my life. Every minute waisted in thinking I wonder if it will come back again is a minute waisted. Don't get me wrong the thought does enter my brain and if it was a 2 minute thought process I cut it back to 30 seconds and I go on with life. Because after all that is why we went through that royal hell...... FOR LIFE
Congratulations on your first of many clear scans and remember
StayPositiveStayStrong
Enjoy your day.......I do....... everyone of them
Jeff
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Jeff, ,
I have already posted a message here to Jim.
I will not describe my nightmare situation right now, - --- I am Terminal in Hospice Care and DAILY things are becoming worse for me I have fought Stage II I Recurrent for 5 years and now it's Stage IV Metastatic throat cancer terminal.
to me, it's Foolish waste of time to worry about Stage I cancer returning. ????? Why even go there??? That's one of the Success stories ! It' is what many of us wished we had........
Please, Live your life Now. You have been given multiple positive chances to have a great life going forward. Leave th is stuff behind and go Live.
Crysta l,( getting worse), ...in Hospice
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Jim ~ I had/have the same feelings after my follow-up PET and subsequent scopes. I kept thinking I'd feel this massive joy but it hasn't happened for me. I'm not to proud to say that I tear up 1-2 times every week or two thinking how grateful I am for being back to 90+ percent of what I was pre-tx (TORS surgery/rad/chemo). I don't tell anyone else (other than my surgeon when we meet) that I feel this way but I feel guilty that I have been so fortunate and it makes me think I will have something bad happen to offset my good fortune. My feelings have gotten better by the month and I'm literally 13 months post treatment now so I suspect your feelings will be changing as well.
Feel free to reach out to me anytime.
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