Hi,
Bob has been finished with radiation txs since Oct 7 (35 total) We have appts this week with the oncologist/surgeon & the radiation oncologist. I know this sounds stupid, but I am feeling overwhelmed/confused. What sort of questions should we be asking? What will they do, tell us, etc? I really want them to tell us that the cancer is gone, the radiation worked & have a nice life. I know it won't work that way. When/Will they be able to tell us if the cancer at the base of Bob's tongue was totally destroyed by the radiation? Will our lives now consist of waiting for scan results?

For so long I was so focused on how to care for Bob that I couldn't think past today. Now that radiation is finished & he is showing signs of improvement I need to know what's next?

I's midnight so maybe I'm just tired. Thanks for any help/suggestions.

Laurie, after rad/chemo surgery is often recommended. If Bob hasn't yet had surgery, the surgeon will probably be discussing the surgical options. You will both need to decide to have or not have surgery. The oncologist will check blood levels and do any necessary further drug theropies to get the blood back into balance. No one will at this time be able to tell you that the cancer is gone. The tumor site is still to "hot" and even scans will not show accurate information regarding the result. They will probably schedule you for CT or Pet scans for 2-4 weeks from now. They will probably not be able to tell you the tumor was destroyed until after removal by surgery and a pathologist examines it. Then they will be able to tell you if the radiation destroyed the cancer. Unfortunately, waiting for scan results will now be permanently in both of your futures. It is something we all have to deal with in our own way. I ignore it as much as possible as worrying about it is going to accomplish absolutely nothing. It will be what it will be. There is nothing we can do to influence the result other than not repeat bad lifestyle choices we made in the past. I put my fate in the hands of God and turn the worry over to Him. When He calls me home, I will be more than pleased to start that journey as I know where I am going. Will pray for you both that you will find peace in your new normal.

Thanks Kirk for your words of wisdom, they helped. I guess I should have gave more history. Bob was diagnosed June 18, 2004 (2 1/2 months after our wedding)1 centimeter tumor found at base of tongue, neck dissection & biopsy of tumor on July 1; 34 lymph nodes removed with 2 nodes containing cancer. IMRT Aug-Oct. Feeding tube since end of Sept; weight loss of 50 pounds. Currently, healing from radiation, throat still sore but not as painful, trying to decrease pain meds & starting to eat very soft foods.

I think since Bob is improving physically, we both now are thinking of how cancer may/not effect our future. He has been extremely strong throughout all of this & I have done my best to support, love & care for him. Now, we are talking again about the possibility of children, making updates on our home, planning vacations etc. you know~normal life activities! But, there is always that dark cloud called cancer hanging in the lurches causing us to question. So, I hope that this week we might know more about how much the radiation worked in destroying the tumor, scheduling scans, what to expect for the future, etc etc. I am really afraid of walking out of the appointments & not nothing anything more that what I know now. Maybe that sounds stupid, but living with ambiguity is so difficult! Perhaps my prayer this week should be exactly what you said, "help us to find peace in our new normal."
Thank you Kirk, happy Monday
PS I am going to be in Floriday next week, vacationing with my mom & 6 other family members on Anna Maria Island!

Bob & Laurie,

I know how strong the desire can be to have something conclusive that you can point to and rely on after the end of treatment. However, recovery from surgery and radiation (especially radiation) is usually a lengthy process, and Bob will need fairly frequent follow-ups with his team for at least a year or two. They should probably be seeing him every 6-8 weeks for the next 6 months or so, and then perhaps less often after that if everything is still OK. Generally he should have an annual chest x-ray, and his doctors may also feel that others scans are necessary each year. He will also need more frequent dental checks from now on (with a dentist who has expertise in post-radiation issues), since radiation can cause long-term damage to teeth and gums.

It's a good sign that he's already back to soft foods at this point, but if he's lost 50 pounds it will be important to maintain contact with a hospital nutritionist who can help him get back to a normal weight.

This is not to say that the "new normal" has to revolve around doctors' appointments all the time. Within a year after I finished radiation, my husband and I took a couple of fairly long vacation trips with no problems, and within about 18 months after treatment we undertook a major home renovation.

However, given the nature of this disease, you will need to be watchful for any warning signs that may appear, and be sure your oncology team is readily accessible for any questions you may have -- not just over the next few months, but for the long term.

Cathy

Bob and Laurie,
The doctors can tell from the CT scans and Xrays that the cancer is gone, and give those pronouncements fairly early in the process. Most of us here have been given a "no cancer" diagnosis following treatment. However, as you will also see here, quite a few people have had recurrences. The bottom line is that there is no guarantee of what will happen in the future. I live my life and hope for the best. I am getting married in December.

During and after treatment I was given frequent appointments with my surgeon, oncologist and radiation oncologist, and now that treatment has been completed for over two years, I still see all three doctors, but less frequently. Even though I never had any surgery, the surgeon happened to be the head of my medical team and the one with whom I spoke most frequently. Having a surgeon does not mean that surgery will be necessary following radiation and chemo.

Best of luck in the future,
Danny G.

Dear Bob and Laurie
I know exactly how you are feeling, and it sucks.
Yes, your life is going to be different and, no, you won`t know anything for a while. Hopefully you will get the best possible news when he gets scanned. In the meantime, I am glad to see you are getting away for a few days, Anna Maria Island is Beautiful,enjoy!
Marica

Hi Bob & Laurie,
Scans are only a part of the "watchful waiting" process of post Tx surveillance. Typically Bob will get examined at regular intervals, usually in line with the oncology practice guidelines of the NCCN (Guidelines for Oropharnyx) http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf
Basically they call for an annual chest x-ray and a visual/palpation exam every 1-3 months for the first year. Some health care providers also recommend annual MRI's or PET or PET/CT or CT scans as well. Your fear will diminish slightly with each subsequent exam. Statistically, if a recurrence is going to happen, there is an 80% chance of that happening in the first year. The second year it drops to 15% and the exam frequency is every 2-4 months. By the end of the second year the exam frequency is typically 4-6 months. The two year mark is significant because after that recurrence risk in the primary site drops to 5%. Bob should have gotten a baseline TSH (thyroid function) and should receive a followup TSH every 6 months and well as other bloodtests. You will a notice lot of stuff you took for granted pretreatment, so don't freak out. The doctors fully understand your nervousness so ask about any issue no matter how small.

Questions to ask:

1. What is the followup interval. Who will be the primary care physician? (in my case it was the head&neck surgeon)
2. What scans & how often?
3. What bloodwork & labtests?
4. How to recognize thrush and other opportunistic infections.
5. Will "salvage" or additional surgery be required? (my tumor was treated with radiation & chemo alone - Typically base of tongue cancers are treated with RT (and possibly chemo) alone depending on staging)
6. At less than a month post Tx there are probably constipation issues, coughing up blood, scar tissue, ulceration, slow healing, phasing off of pain meds, nutrition, immune system, swallowing and phasing in of solid food, etc.
7. Keep a journal.

It took quite a while before I actually started to feel like a survivor but its been almost 2 years for me now and I feel pretty good about it. I don't think too much now about the regular followup visits. It's almost like going to the dentist.

I still don't try to think past today - it keeps me a lot saner that way. We are cancer survivors one day at a time.

Hi, Bob and Laurie, and everyone else!
You are about 2 weeks ahead of Tom and me in this journey, and your post could have been mine! Same questions floating in my head, so thanks for doing my work As usual, good information is received, and Gary, you always make me smile with the detail you give us You are great!
I've read everything to Tom.....who is finally off the couch and sitting at his computer catching up on work that has been piling up. He really is so very happy that I have 'access' to you all, and he says "Thank you" for your help!
Love to each,
Nicki

Gary...You`re Brilliant...Thank You from all of us!
Marica

Thank you to each of you. This site is like a support group we can access anytime. Each of your posts was helpful. I print them out & give them to Bob to read. Nicki, I saw your history & thought how we must have been going thru some difficult times simultaneously~hang in there!

Thank you again to each of you for sharing your wisdom, experience & support with us.