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Gearing up for treatment

4 Posts | Page(s): 1 

Gearing up for treatment

by Cortni on Sat Aug 22, 2015 07:51 PM

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Hello everyone- I was diagnosed 8/11/15, since then as i'm sure you all know it has been a whirlwind of Drs appointments. I'm just really overwhelmed which i'm sure is to be expected. This is very scary. I am being treated at MD Anderson in Houston, and am thankful that I am close enough to go there. I just have a few questions, I'm sure i'll have more as I move through this. I met with my head and neck surgeon on monday of last week, she was very positive and made me feel much better. She said we caught this early. She is still staging waiting on the results of the PET I had Thursday but from what she found in her examination she said T1N1-2. She also mentioned that although it's rare I may be a candidate for surgery alone. I haven't heard of that. Have any of you? They have also talked about radiation options between IMRT and Proton Therapy, any ideas on these two options. I am so new to this I have been reading and trying to learn as much as I can before I start this journey. I'm 34 with two kids and a supportive husband. I only weigh 143 pounds and am trying to pack on as much weight as I can before treatment. I keep reading how much weight everyone has lost and I"m thinking, I can't afford to lose even 40 lbs.

Last question, did any of you feel extremely fatigued prior to treatment? I started not feeling well in January of this year but didn't have the lymph node come up until May and in that time had several episodes of feeling faint and weak. Just curious if anyone else had these things happen before they started treatment. This crap just makes you feel awful and I'm ready to get it beat!!!!

thank you in advance for your response. I am so happy to have found this place. 

RE: Gearing up for treatment

by atcbugsy on Sat Aug 22, 2015 08:42 PM

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Hiya Cortni,

Several folks on the Boards have had treatment at MD Anderson, including me.  I believe you're in good hands.

I have not heard of surgery alone, but that doesn't mean it cannot happen.  I had radiation alone without surgery or chemo because we caught it so early.

Several folks on the Board have had the Proton Therapy.  My Radiation Oncologist said that my type of cancer-HPV 16 at the base of my tongue, responds better to IMRT, so that is what we did.  33 treatments.  Be sure to check with your insurance company and see if the Proton Therapy will be covered.  The type of Blue Cross/Blue Shield I have will only cover Proton under certain circumstances, and mine was not one of them.

It's great that you have a support team to help get you through this.  If you can, bring your husband with you to your appointments.  I found this important because what I was hearing the doctors say wasn't always what they were saying.  If he cannot join you, maybe someone else can, or maybe you can call him while the doctors are discussing your case with you so he can listen in.  I believe it's important for your husband to know what's going on as you progress through this crapfest.

I strongly recommend getting a PEG tube.  Better you should have it and not need it than the other way around.

Pre-treatment fatigue was not an issue for me.  However, I began having side-effects during the first week of treatment.  The radiation really kicked my butt.

You will beat this crap!  Post here as often as you like with whatever is on your mind.  These folks are a fantastic support group.

Stay strong.


RE: Gearing up for treatment

by Sdurnell on Sat Aug 22, 2015 09:43 PM

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Hi Cortni.

First of all, I have heard of surgery alone.  Several people here, usually those who are not yet stage III, have had that.  It leaves radiation as an option should there be a recurrence, which is rare.

I had cancer only in one lymph node, which was diagnosed on modified radical neck dissection (removal of all neck lymph nodes--only--on one side).  They never found my primary, so I guess I was T0,N1, stage III.  I had radiation to my entire neck, nearly five years ago.  The last time I talked to my ENT/surgeon he said that today likely he would have done the dissection and then taken a slice off the base of tongue and not done any radiation.  That's how much things have changed in just four years.

So I would question why this doctor might want to do surgery alone, but not be terribly skeptical if she can explain her reasoning, especially if it's something newly recommended.

Also, I was somewhat overweight at 140 (the fattest I could get, as my doctor advised me to eat a lot over the holidays before my radiation), but lost 36# despite getting a feeding tube halfway through treatment.  It would have been ugly (actually, in my case, fatal) without the tube.  It was pretty ugly even with it!  It took me quite a while to gain weight, but now I'm at 123 which is good.  I'm also 30 years older than you are!

I know that the recovery from base of tongue or cancer surgery can be rough, but I think most survive it OK without a feeding tube.  But remember that, as with my case, it's possible to change your mind and get one even if you originally decided not to.  You might want to talk this over with your doctor, too, if a feeding tube is mentioned.

I don't know how old your kids are, but it's important that they know what is going on if they are old enough to understand at all.  Just be sure to be reassuring to them (as your doctor was to you).  If they are young, they likely will not understand the fear associated with the word "cancer" and that's a good thing--maybe you don't even need to use it.  If they are older, tell them just the basics, then be very open to talking about it and answer any questions they might have, as long as you can do it without breaking down.  If you are too upset, maybe your husband can do it.

Wishing you all the best,


RE: Gearing up for treatment

by JohnnyO on Tue Aug 25, 2015 07:50 PM

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Hi Cortini -

I've heard of the surgery-only option; it's apparently a new approach, which, I believe, is because of TORS, which is not as destructive as radical neck dissections.  Because of the detrimental affects of neck dissection, and the survival achieved with radiation and chemo only, docs were not recommending surgery.  Indeed, my second opinion advised me against surgery for that reason, until he realized I was having TORS.  But I think that TORS plus radiation plus chemo is being seen as overkill, and if good margins can be obtained and the cancer is early stage, then surgery alone would be preferable to radiation (and radiation-enhancing chemo) because of the detrimental long-term affects of radiation.  Funny how things change. 

As I think surgery alone might still be considered experimental, I suspect that you will be given the choice with the caveat that there is a known success rate with radiation/chemo only.  At an early stage, I'd have considered taking the risk to avoid the radiation; you can always go back and get it if you need it.  It's extreme and potentially debilitating.

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