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Guys, need some advise...
My granddad aged 76 was diagnosed with oral cancer in the lower lip in november 2010. We opted for surgery and Dr. removed the cancer along with nearby tissues and sent the same for biopsy.
Biopsy was clear as in there was no cancer in the surrounding tissues.

Last year again in october we noticed a small red lump in his lower jaw towards the extreme right. The Dr. 1st thought it was an ulcer and mostly benign and prescribed some ointments.
Since it didnt go for a month we went in for a biopsy which classified it as SCC. It re-occured.
We went in for a surgery and got it removed along with surrounding tissues.
The biopsy came out stating that the margins were not clear, hence there were still cancer cells in his mouth.
We were suggested to go in for 30 cycles of radiation under rapid arc technology.
We went through the first 15 with relative ease, but the next 5 were not good at all as, his skin exposed to radiation burned out, he had ulcers all through his mouth which looked like they would bleed, his BP started fluctuating because of insufficient salt intake. And he is almost in a depression. He also had urine infection during 10 & 15th day of his cycle and was administered anti-biotics.
PS: His PET CT before the radiation could not detect any cancer cells.

Now we are of the opinion that it is better to discontinue the treatment as we assume the microscopic cancer cells would have died by now. We are unable to take a call as the Dr. here says he want to finish the treatment and the other Dr. Says that its ok if we quit.

We know that we can push him and all of us can work through these last 10 cycles, but we are unable to take a call as he is in real bad shape and even if he sips water his mouth goes on fire.

Kindly advise.



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Welcome to OCF! The questions you ask are not easy to answer. Our group is made up of oral cancer survivors and caregivers, we do not have medical backgrounds.

I would approach the issue like this... if the treatments are not finished and the cancer returns in a short time, radiation may not be an option. Given your grandfathers history it would be better to complete the treatments rather than guess if all the cancer has been eliminated.

Radiation becomes progressively more difficult as the treatments continue. As the patient nears the end of their treatments, they have many side effects which make it hard to keep going. Depression is common with OC patients.

Focus must be on their intake, every single day taking in at least 2500 calories and 48-60 oz of water. If these minimums are not met, the side effects can quickly become out of control with malnutrition and dehydration among other issues setting in making the patient feel even worse. Even though it is difficult, painful, and probably one of the hardest things most patients have even had to do, the end result of being cancer free is worth it. A nasal tube is available to help push the patient to increase their intake. Every day they still should swallow even if it hurts. The swallowing muscles can quickly "forget" how to function when not used. I know this isnt easy to do but it must be done. At the treatment facility patients who need extra fluids should be able to get hydrated in the chemo lab with a doctors orders. At least thats available here in the US. It would help him to avoid dehydration and he would feel much better when properly hydrated.

Best wishes!


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
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First off remember none of us are doctors of any kind but we are seasoned patients and some of us, like me, have read thousands of posts over many years.

I would strongly encourage you to listen to your highly trained, most likely experienced specialist. No one on this site would advocate terminating Tx. This cancer has proven a million times over to be extremely agressive and hard to eliminate even with the full amount of Tx. We often see recurrence after recurrence. Some ultimately kill it and some do not but under virtually no circumstances would I stop this Tx.

The reactions he's having are well within normal. Talk to the doctors about things that may help him get past these adverse reactions, i.e., pain meds, feeding tube, topical ointments just to name a few. Most of us had nasty reactions throughout our Tx starting around the mid point and they will get worse but with the proper assistance he can get through this Tx with minimal discomfort. I personally thought my Tx was going to kill me , not the cancer. I lost 30% of my total body weight and was admitted to the hospital on several ocassions during Tx but I survived both the Tx and the cancer and I'm here 8 years post Tx telling you so.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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You probably don't need to hear it, but I absolutely concur with the two opinions already given. I know your grandad is 76 years old, but giving up on treatment just to provide a little more comfort to him is accepting the likelihood of a much worse long term problem to get a short term benefit.

Many patients have had similar side effects to the ones your grandad is experiencing. Often times they are absolutely miserable when being endured. And they may get worse before they start to get better. But they are also very survivable and the long term benefits are way more important.

Seriously, think long and hard before you decide to terminate treatment.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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I totally agree with all of the above. Microscopic or not this cancer can be aggressive, as you may have noticed. He should complete all treatments. Ideally he should also be able to eat and drink. I am assuming at this point he does not have a PEG tube (G-tube) to accept feeds. I think they may not choose to do this for him at this point (they may - I would ask). However if they choose not to you could ask for an NG tube to get him through the next 4 or 5 weeks. This way he would be able to maintain his nutrition and fluids. This would go a long way to solving his main problem which is going to be malnutrition, and dehydration... (sodium level of course is related to this.)

For his mouth. Ask the dr. for pain meds, snd a prescription for Magic mouthwash (its a rinse containing a few different drugs - often lydocaine is one of them - its a numbing agent which temporarily numbs the area so he can drink and swallow) and invest in some boost or ensure (whatever the highest calorie/highest protein nutritional drink available in your area is. Here we have resource. Try to get him to take a bit by mouth, and the rest by tube.

He needs to rinse after every meal/drink and in between if he can. There is a baking soda, water, salt mixture that most of us used throughout treatment that you can make at home. He can rinse and spit this. This, believe it or not, keeps his blisters clean and any sores as well and helps heal. (flattened club soda will also do the trick and he can drink the club soda which will help soothe his throat.

Skin issues. Cream. A good solid cream - there are a few here that are fantastic. I am sure you have some there... shea butter? something to soothe the area. do not apply it before his radiation. Put it on right after.

Is he receiving chemo? Often they give it in conjunction with radiation.

I really would advise you to push him to finish. You should have been told what to expect. It's not a fun treatment but it works.

Take care and have a great day.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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[quote=Aditya385] We know that we can push him...[/quote]

If he is resisting continued treatment, sure you could push him... But please don't. This is your grandfather's call; no one else gets a vote.

He shouldn't, however, quit under the mistaken impression that no cancer remains. As long as his treatment's incomplete you have to assume that his cure is incomplete. And persistent cancer almost always has horrible consequences.

On the other hand, treatment definitely entails gambling quality of life in a bid to gain quantity of life. At 76, it is not unreasonable to ask whether the risks are worth it. While many have decent long-term outcomes, others are far less fortunate. There's no guarantee treatment will extend his life. No guarantee he won't wind up with horrible long-term side effects that make his remaining years miserable. In fact, there's no guarantee that treatment itself won't kill him.

One approach would be to help your grandfather understand the risks and potential benefits of his options. Do everything you can to remove any barriers to continued treatment such as pain, fear, depression, cost, transportation difficulties, etc. Help him focus on long-term possibilities, rather than short-term suffering. And then support him with all your heart no matter what he chooses.

I'm so sorry that your family and your grandfather are facing cancer again and that he's having such a hard time. You are a loyal, loving grandchild and I can only imagine how painful it is to see him go through this. My heart goes out to all of you.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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It is so very hard to see someone you love going through such indescribable pain. My son reached a point about half way through treatment when he decided to quit and absolutely refused to go to his Rad Tx. I was so worried, but the same day he had a doctor appointment and so I said ok, but let's just got for his appointment and see what the doctor says. When the doctor saw how raw and bleeding his mouth was, he gave him a one day break. I think it was a Thursday and so he had the weekend also to recover. He was much better on Monday and resumed his treatment.

Your grandfather is probably overwhelmed about so many more treatments to come and all the pain associated with it. Maybe if he could just think about the next one to come, taking one treatment at a time and consider the pain management advice above, it might be easier for him to continue. I noticed towards the end of my son's treatments, he was much more eager to get to finish Tx. The very last treatment, I could see him suffer so much, I was the one who couldn't stand it anymore and suggested he stay home but he was adamant in making it to that last treatment. It is your Granddad's decision of course but he should be helped to consider all the factors involved and know that whatever HE decides, that he is making an informed decision about his health and recovery. I really hope everything gets easier for him. You and your family are providing such wonderful support for him.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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