All,

I was curious who out there feels like a physician made a mistake in their care. Not perhaps in initial diagnosis but more downstream. I got a second opinion last June from a well known treatment center. They were ringing an alarm bell that my local ENT surgeon was not. Basically, they were right and seven months later I went through what they were recommending AND THEN SOME!

My case is still "curable" but the surgery was much more involved seven months later!

So the real question is coping, accepting, moving on. Anyone have a similar story or advice on how to 'get over it.'


Jay

Jay,

I felt like suing for years after my first mishap with chemo in 2009, which severely debilitated me, but the ailments, hospitalization, and continuous treatments kept me busy! Looking into the matter, much wasn’t on my side, and may prove to be a waste of time and energy, other than trying to get better! I think there may be a certain time limit to take action too.

There is also more than one way to treat someone, as long as it’s not negligent, in my opinion. Most follow NCCN guidelines as a suggestion, but there are others too, from surgical societies to radiation oncology societies, that offer suggested guidelines too, and others.

I don’t fully know the situation, but you can go to three different doctors, I have, and get three different answers.

I wish you the best, and a speedy recovery!

Paul,

Thanks for sharing. Basically last May we spotted the cancer on the floor of my mouth. This came after a 2015 surgery that left me with a bit less tongue and fewer nodes. Anyway, last May my guy said, "It was an outpatient surgery." Wham bam if you will. I went to a well known large facility and they said, "It was eroding the mandible and we needed to do a free flap surgery followed by radiation. Well...I went with my guy. I thought, "They big facility was throwing for the end zone when all we need is a first down."

Turns out the big facility was right. He did what he said he would and then this winter half my jaw is eroded away!! He also said, "It wasn't in the bone!"

So this January I lose half my tongue. The free flap fails and now I've got a pec flap. Not sure how much tissue the large treatment facility was considering packing into my mouth but I might have had a more functioning tongue!

That's my story.



Jay

All,

I just read research in 2014 that shows sparing the submandibular gland during contralateral radiation is "feasible and safe." We're zapping my 'good side' (3 weeks left) and I'm wondering if I could spare myself some of the dry mouth if I said, "That's enough." My radiation oncologist has yet to get back to me but I am sure he will say, "It's not advisable." UW in Seattle has been sparing the cSMG since 2006 where possible. Anyone more educated than I am have an opinion?

Thank you in advance,



Jay

Darn Jay, I’m sorry to hear this, but glad you can re-tell it. If you want, able, you can persue the matter. I’m not sure of the time limit, if there is one, but I may have heard of one. Once I was ticked off laying in bed, I called a lawyers office, and they referred me to another, who allegedly looked into my case, but unfortunately, they said i had no case. Each situation is different, and so are lawyers too!

Be well Jay!

Im sure this is on a case by case basis. Rads is NOT fun and something we all would love to quit before our treatments are scheduled to end. I actually told everyone I quit but my son and nurses ignored me and made me keep going. Then I ended up getting so sick I was admitted into the hospital. Once in there you have no choice ... those transport people just show up and take you to rads anyway no matter what you say. I lost my voice so couldnt talk by then so I really was at their mercy. Anyway, what I was told way back then (2007) was under no circumstance would my doc cut the amount of treatments. By not completing the original treatment plan's number of rad treatments would give a patient a greater chance for having a recurrence. All it takes is for one teeny tiny microscopic cell to be missed by rads for it to grow into a recurrence. Im sorry, Im not familiar with the study you mentioned. You may want to read more into it before talking to your doc. Pay attention to how many patients participated and what the long term outlook was. In my opinion (a non-medical educated background) its not worth the risk. Ive been thru recurrences...twice! Im one of the very few who can say they've survived 3 rounds of OC within 3 years. From what Ive seen here over the pasty 12 years is many who have a recurrence, the cancer is faster moving and much harder to eliminate. The choice is yours but if I had to decide for myself after everything Ive learned over the years I would definitely NOT opt to cut back rad treatments. Whatever you select, I hope its the right decision for your situation.

Paul,

Thank you. But I informed myself right? I made the effort and chose not to listen. In fact, my wife says I wasn't ready to hear what the Mayo was telling me. I'm really mad at myself mostly. I skipped a follow up in 2014 that would've possibly prevented the 2015 case. Who knows.

All of that said...during this most recent go around they found two blockages in my heart. I had an abnormal rhythm(they say M.I.) while still in the ICU and that lead to two stents. Would I have been so "lucky" at the Mayo? Maybe I would have breezed through the free flap only to drop dead mowing the lawn this summer?

BTW I look at your signature and all that you've been through and I wonder what keeps your spirits up? Right now I can't get past all of the hits I've been taking and my altered quality of life. How do you do it?

Warmly,


Jay

Christine,

Thank you for the thoughtful response(as always). The patient numbers were pretty high and no one had a recurrence in the nodes near the gland. Maybe you could take a look at this:

https://www.healio.com/hematology-oncology/head-neck-cancer/news/online/%7B0c19c1f8-a8e5-4844-8d6d-96e6648d501e%7D/contralateral-submandibular-gland-sparing-radiation-safe-effective-in-head-neck-cancers

Of course it says for appropriate patients. Not sure if that's me.


Jay

Thank you Jay! The further you’re from this ordeal, the better it gets, so take one day at a time! You’re right in the mix of it right now, and luckly I wasn’t a member here until I was three years out from my first treatment lol, even then, I wasn’t listening much, but I soon found positivity here I hadn’t heard before. Soon, and if you like, you’ll be giving sound advise, in addition, your posts and questions may be helping someone in a similar situation who may be reading them, so you're already helping others knowing it or not.

Btw, we share a MI, which I had last June, so pretty much we’re both lucky with that too!

Here’s to your successful treatment!

Paul,

Thank you. I will stick around here after my treatments. BTW I am grappling with a huge question right now. With three weeks left of radiation I have discovered that there is evidence that sparing my contralateral submandibular gland is possible and doesn't compromise control. My radiation oncologist is 'old school' and says, "We've got one shot at getting rid of this cancer for good and because there are lymphatics around it...it would be unwise to back off now."

I'm really worried now about quality of life and permanent dry mouth. Can you offer me some thoughts on that? Ain't nothing right here in Cincinnati.


Jay

Jay,

It’s a small study, plus it’s from 2014, and may or may not be ongoing. My cancer was in the oropharynx, and 50% of the patient’s in this study were from there and the rest it doesn’t say, but they all received 33.04Gy, nd to my knowkedge, metastases usually do not occur in lymph level l for oropharyngeal cancer, but certain tongue cancers do. I thought in other studies in the oropharynx they were avoiding level 1, and there may be 100’s of studies, which you wouid have to qualify for at the start. At this point, you are probably getting 2Gy a day or around that, plus once you start radiation to a tumor it’s not good to stop until fully completed for a killing effect as it can make matters worse. I did my best not to miss any treatments, as advised by the doctors and staff too. Even if the scans show no cancer or the cancer was removed, there still can be microscopic metasteses that can recurr later on if not treated, and that’s what the radiation is for too. Cancer is best treated the first time, although some may have the misfortune to go through it a second time, but lucky enough to come through that. It gets more difficult as time goes on!

I hope this helps!

Paul,

Thank you as always for your insights. Do you have the dry mouth?


Jay

Hi Jay,

Yes, I have dry mouth, but it’s not as bad as it was after treatment or years after that, but I always carry a water bottle with me, so that helps. The dry mouth, and pretty much continious treatments, did a number on my teeth, so I needed all 30 to be surgically extracted about 4 years into my journey, and now I have to wait to get implants or dentures after healing, and then MI. I doubt implants due to all the radiation I had, and already had ORN, Osteoradionecrosis, from radiation and tooth extraction.

impeccable oral care is a must, and use of prescription fluoride treatments, no alcohol mouth rinse, brushing after each meal, and before bed, and regular visits to your dentist after you finish. You may have needed dental clearance before you started rads, and told when to return?

I hope this helps!

Jay, since this threads conversation has turned to what was being discussed on another thread Ive merged the 2 together. I hope this isnt confusing for anyone reading as the flow isnt as easy to follow.

BTW... I looked up the study you mentioned. Lessening the rads to help patients manage dramatically less collateral damage to other nearby areas sure would have sounded good to me when I was suffering thru it. I definitely would have jumped at the chance too. But, having only 71 patients take part is a very small study. Then looking at the tumor locations, that significantly lowers it to far less who have similar located tumors. I cant remember if when I read thru the study earlier it had anyone who was being treated for multiple cases of SCC over the span of many years. That alone I would think would make you ineligible to lessen the course of rads.