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New here, what questions do I need to ask the doctors?

needhope1
Posts: 29
Joined: May 2009

My husband (46yo) found some lumps in his neck while shaving about a month ago. He had several lymph nodes and his right tonsil removed last Thursday. Was able to do a frozen biopsy of the nodes during surgery which the ENT called squamos cell carcinoma. He believes the origin of the cancer is the tonsil, but we will not get pathology back till most likely Monday. His ENT will meet with the oncologist this Wednesday to discuss my husband's case. The ENT believes this is stage 3 or 4, but we will get confirmation in the next few days.

As you can see, we are very new to all of this information. What are the best questions to ask the doctors at this point?

I am really scared. Any help would be so appreciated.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

needhope,

I would get a notepad and pen, sit down with hub, and record your questions in this notepad, so that none are forgotten when you meet with the doctor. It would serve you well to record the answers you receive as well, as they may provide fodder for future questions.

(Incidentally, if you have not already been doing so, I would start requesting copies of all medical records as they are created ... they should not charge you for these, but if you later have a need and want them all at once, you ARE likely to be charged for copying ... it is good to have these for future reference in the event you switch doctors or facilities or if something crops up down the road.)

Among the first things you will want to know, of course, is the stage of the cancer (and what the difference is). You will want to know what follow-on treatment is anticipated and why. In my case, following surgery to remove cancer from my tongue and neck, I received chemotherapy and seven weeks of radiation in hopes of catching any 'strays'. So if they indicate there will be no need for further treatment, also ask why not.

The answers to THESE questions will really be what prompt the onslaught of a multitude of new questions for you (what kind of chemotherapy; how often; what are the typical effects; what medications to take; extent of radiation; burn-prevention methods; short-term and long-term effects of chemo and rads; etc, etc).

In the meantime, again, start writing them down, and do not leave your husband out of this mix :). He has questions too.

You might also do yourself some good by reading previous posts in this disussion area, those that seem to be questions themselves. This will give you an idea of the kinds of questions that others have had.

Best wishes to your husband, to you, and to your entire family.

Take care,

Joe

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

In addition to all that Soccerfreaks mentioned, you may want to look in your area immediately for a Support Group specific to Head and Neck Cancers. Not sure where you are in the world but they are common and hopefully there will be one near you.

In a short time you will have a lot of issues come flying at you and you cannot possibly have too many resources. Come back here with specifics as you can. Talk to your local support group. Check out the other HNC support sites like oralheadandneckcancer.org

Also, GOOGLE is extremely helpful.

Ask your Doc if the Pathologist has the ability to screen for HPV 16 or HPV 18. The HPV positive cancers are becoming extremely common but the news is good in that they respond better to treatment with a higher survival rate.

Start asking about issues like oral healthcare, skincare, dietary issues, etc.

I know this is all so overwhelming right now. And, in all honesty you may be facing one of the toughest times in your lives. But, with current technology, medicines and therapies there is every reason to believe that your husband will beat this and that he has a legitimate shot at a long life. No matter how overwhelming it gets, no matter how dark the day seems, keep the faith, talk to friends and family, comiserate with those of us that have been through all that you may face. There is a wealth of experience and knowledge here at the CSN so use it to the fullest.

God Bless..............keep us posted.

needhope1
Posts: 29
Joined: May 2009

Thanks to you both for your help and support! I am sure I will have many more questions as my husband's diagnosis is totally given to us.

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