My mom (70) was just diagnosed with stage 4 throat cancer. She's talking to a couple of doctors about treatment options - one in Arizona (where she spends the winter) and another in Boston (where I live, near my sibling and other extended family members), where I would be the primary care giver. She's coming to Boston for a consult this week, so we will know more then.

I'd like to get feedback from others about their experiences during treatment, so that we (she) can decide which location might be best. Arizona is familiar to her; she has a pool, a gym, and other regular places that she visits. She has friends there, although many will be leaving during April. She has a companion who can provide care. He is dependable, although not the most empathetic or flexible person. I'm concerned that she won't get the quality daily care that she needs there.

In Boston, she would be living with me, and we will have an extra bedroom where her friends can stay if they want to visit. We can definitely create a comfortable home for her, but other than extended family, she has no friends here, no gym, pool, etc, although I'm sure that can all be arranged. I'm nervous about being the primary care giver. Our relationship is sometimes a challenge, to say the least, but doing this feels right to me.

Any thoughts or suggestions for us as we review the options? Thanks in advance.

Welcome to OCF! Glad you have found this resource to help get your family thru everything. OCF is full of correct info and support.

The very best treatment centers in the US are called comprehensive care centers (CCC). Here is a list which can help you to decide where your mother will be treated.
Cancer Centers

Right now try to encourage your mother to eat all she can. Its important to get all her favorites now as her sense of taste will change for a while.

Best wishes!

Hi Christine, thanks. I'm hopeful that she'll agree to treatment at Dana Farber here in Boston. She's worried that it will be too big and less personal than the doctor/facility that she saw in Arizona (who's not on that list).

There have been studies that proven the best outcomes will be with patients who are treated at a top cancer center. Its where they attract the brightest doctors and are up to date with all the newest technology and treatment protocols.

As far as a doctor who has the personal touch, that can be found anywhere. Nice doesnt mean they will cure the cancer.

Choose very carefully, but dont take too much time in making that decision. Getting rid of the cancer needs to be done as soon as possible. Oral cancer can be a very aggressive, fast moving cancer. By treating it quickly, hopefully it will be at a lower stage so its easier to treat.

Your mother will need a caregiver for at least 3 months depending upon the treatment plan. This type of cancer isnt a walk in the park like some other more commonly known cancers. I dont mean to scare you but it can be a pretty rough go for some, then you have others who will sail right thru. She may not feel up to a pool or the gym for a while, plus her blood count numbers could be low which means she needs to avoid public places. That is very common with cancer patients. At the very least, round someone up to check on her daily and who will provide her transportation. If she is planning on driving herself, that will probably need to be changed so its best to be prepared. By planning for the worst, when its not so bad that can be a nice surprise. Im positive being a caregiver for a parent can be challenging at times but she will need someone who is with her or I am 100% sure she will have a difficult time of it.

Where You Are Treated

Best wishes!

Sorry you and your mom have to come on the roller-coaster ride, nevertheless, a hearty welcome to this unique group. During treatment you mom will need someone who can manage her day for her, including when and how much she has to eat and drink, giving her her meds, monitoring her reaction(s) to the treatment and talking to the doctors and the nurses at the hospital. Fatigue is the main side effect of radiation treatment and can continue for months or even years afterwards. For this reason, she probably won't want to use the gym or the pool until she is sometime into the recovery phase. For these reasons, I would think that being closer to you and other family members will be easier for her.

You will also need a break from time to time when caring for your mother. So, having other family members around will be a big help for you.

Your mother is indeed very lucky to have a caring and loving child in you. All the very best.

Another option is to have a consultation at a CCC, like Dana Farber, and have them set up the treatment plan..type chemo, radiation fields, etc. and then do the treatment locally, with both their approval. Good luck with everything.

everyone, thanks for the advice. Last night, she seemed more willing to do the treatment here. Glad about that. Still nervous and overwhelmed by all the unknowns. Aargh. Not sleeping well either.

LB, in my opinion, since Dana Farber is one of the very best places in the country that puts it in the lead. Add to that the fact that you will be there, and that the Boston winter is behind you and it seems a clear choice to me. Treatment for this cancer is tough but doable. Your mother will be very tired. We all know the challenges inherent in adult parent-child relationships, but she's going to need a lot of help and you're the best person to provide it. Bu it's not going to be easy for you either. Your comment about not sleeping well, already at this point, is very telling. I'm sure that the hospital has resources to help you deal with it all as well and I urge you to take advantage of them.

You're now part of our family so please come here for questions, rants and anything else. We're here to help.

I would have her come to be around your family truthfully she'll need a lot support and Dana farber does cancer all the time every day she's better of in a place that does extensive treatment and has a lot of experience with this type of cancer. Personal doesn't matter outcome does. Hugs. -and sorry about your mom...

Treatment will definitely be at Dana Farber. It seemed like a no brainer to me, but it's her body, her choice, as the saying goes.

Last week we saw the three doctors - radiation, chemo, and surgeon and the PET scan was done, which showed the 2 tumors we knew about plus a third one. The tumor board meets on April 4. We've heard that surgery might be possible, but it probably won't eliminate the need for chemo and radiation. Not sure when or how the tumor board results will be communicated to us - via phone call or in person. We don't have an appointment set up for that, although we do have others next week.

Before the tumor board meets, she will see the dentist and the surgeon again. An appointment has already been made for radiation mapping on Thursday. If treatment is "just" radiation and chemo, radiation will start on April 22, with a dry run on April 18.

I have many, many questions! What do I need to know to best advocate for my mom? She wants to focus on the best case scenario. I want to plan for the worst and hope for the best. What questions should I be asking and services should I be seeking? How best can I communicate appointments, etc. with the multiple family members who need to know?

For people who've done chemo and 35 weeks of radiation, how many needle sticks did you have? She doesn't want a port, but she has limited vein access. I would like to give her accurate information so that she can make an informed decision. She's concerned about scarring and cleaning the port (although I believe the doctors said that would happen at the treatment center).

Thanks in advance!