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Joined: Jan 2006
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KVJ Offline OP
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My step father (who in my heart IS my REAL dad) had mouth cancer 10 years ago. This fall he had significant changes in his vocalization and was going back and forth to his doctor (who KNEW his history) and they dinked around until early January when they finally scoped him. Said there was one of 7 spots they were concerned about but they biopsied all 7 and guess what all 7 are cancerous. I am so angry with the medical profession right now, but that battle will have to wait for now.

We don't know grade yet as the PET isn't in yet, but he goes tomorrow to begin radiation. That's another thing, with his mouth cancer, they said at one point by my mom's memory that he had received the maximum radiation for his lifetime exposure?

From reading various throat cancer stuff online, I'm suspecting that this is going to be a long and very unpleasant ordeal with eating tubes possibly breathing tubes etc? How does the past amount of radiation effect this? Will it automatically be worse? I know there are no hard fast answers, but I would like to go into this with some knowledge about what lies ahead. My folks live a bit over an hour from me and luckily I was scheduled off this coming week so I'm going down tomorrow to go with them. My step dad is 72 but extremely healthy - they run and bike across the state (NC) and are always on the go - they're healthier then I am for sure and I hope this will help him. His mouth cancer treatment wasn't horrible - wasn't easy, but I never felt like he was over whelmed by it.

Advice? I don't think my folks have delved into what may lie ahead a great deal yet, but my Mom wants to "talk in private" knowing that I have at least begun researching.

Kaye

Joined: Mar 2002
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Kaye, this is a very scary time for you and I am so glad you have come here.

It is my understanding that new delivery systems allow much less radiation to be absolutely pinpointed. When I was radiated 4 years ago, I discussed lifetime maximum rad with the doc, who said that I was not necessarily procluded from having more if necessary. And frankly, I would rather give radiation a chance, than leave seven areas untreated. It will be difficult, but one day at a time is a better way to look at it. If he needs a PEG tube, you can read all about that here. For a few people, that has caused some problems, but for many of us it was just a very handy lifeline and not a big deal.

If you can go with your dad when he talks to his doctors, that will be a big help as it is sometimes hard for patients to remember all that is said. Take notes and ask questions. And I want to caution you that while researching is good, too much information can be overwhelming. Avoid statistics, as they are notoriously misleading and can truly give you a false picture.

I know that your involvement will be a big help to both your mom and dad. You may have to be the really strong one for a while. Being younger, you are better able to be a patient advocate, which your dad will need.

Come back with any quetions as the treatment progresses, or just to vent. You can be sure there is always someone here who knows exactly what you are feeling or dealing with.

Joined: Mar 2004
Posts: 417
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Kaye:
Almost everyone here has a degree of mistrust in the medical profession, especially when they display a lack of thorough investigative finess.
Most of us can relate to your situation and you have our prayers and thoughts.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
Joined: May 2005
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Will he also be receiving chemo? It does improve the odds of saving the larnyx. My thoughts are with you.


Husband diagnosed 2/9/05 SCC Larynx (piriform sinus)Stage IV,T4,N1,MO
cisplatin/5FU 3/21-3/25 & 4/11-4/15, began 39 rad 4/21/05 last rad 6/17/05, mrnd 10/7/05
Joined: Jan 2006
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KVJ Offline OP
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The plan for now is 6 weeks of radiation. They are hopeful that since he handled his previous 6 weeks so well - the Docs were surprised that he didn't really have major issues - that this one will go smoothly as well. The oncology/radiology folk are calling his cancer early stage as opposed to the E,N,T doc who said maybe stage 2-3 but that was also before the PET results were back. They are good friends with a radiation doc (not for his situation) who has jumped in to assist as far as for lack of better term "jury consultant" to just review what's going on and give input. He had immediately called them and said you need to get Dr. So and So and fortunately that was who he was sent to. I believe at this point they're only planning radiation for now, but other options are definitely still open depending how things progress. They had said surgery was definitely a possibility down the road. There was some concern about a "mouth issue" but happily that turned out to be a dental problem he was already aware of and not cancerous:)

I did not get to attend the meeting because there were some communication issues so I didn't get time of appt until it was too late to get there, but I passed on the write it down idea since I do that myself.

Fortunately I have 5 weeks vacation (well 4 after this week) this year, so my work is aware they may have to work around me periodically.

Thank you guys! My prayers are with all of you as well.

Kaye

Joined: Jan 2005
Posts: 156
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Joined: Jan 2005
Posts: 156
hi kay,stay tuned in to this site there is allways someone with the answer you need i would have gone insane without these wonderful people who are also very informitive.ive been down the same road as your father,its not an easy one but there will be light at the end of the tunnel believe me im still fighting the beast IWILL WIN..ITS ONLY BEEN 8MONTHS BUT IM GETTING THERE MY THOUGHTS AND PRAYERS ARE WITH YOU ALL BEST WISHES ON YOUR TRAVELS ...MAZ


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