Posted By: Vicky1

Dad - 05-13-2019 02:54 PM

So, we went to see his radiation oncologist today for an appointment after his recurrance and second surgery. She scared us woth prognosis and survivorship numbers. She said something like 30% of the people who have recurrance so quickly are still alive in 2 years and that we need to be followed closely for the next few years. It was an odd way to word it and, of course, it made me cry. I tried to tell dad that I think what she meant was that what happens in the next two years is really important to what the prognosis will be, but of course, he heard "you have 2 years to live." She's waiting to hear from some other head and neck oncologists to see if she'll recommend more radiation, which she doesn't want to, or what. His surgeon seemed really optimistic last month and quite sure they weren't going to recommend any additional treatment, so this was unexpected.
Posted By: KristenS

Re: Dad - 05-13-2019 08:45 PM

I had a recurrence the very same year. It's well past two years for me now. That said, mine wasn't as severe as your father's, either time, but I think those quick recurrences might just mean that there was a tiny bit hiding out that was missed, and the second time is a good way to catch it and be done with it ... not a death sentence. See if that helps him a bit.

Now, my mother had a different opinion, because the recurrence was in the same spot as the original ... she thinks the surgeon missed something. But as all the reports were coming back 'clear margins' as he did the surgeries, I don't think he did. And it helped me to believe that, since I had to rely on him for my tongue surgeries and the neck dissection and some of my after-care. (He's a good doctor.) In fact, I'm still not sure WHY we even did the neck dissection, several months after the first surgery, because all the indications at the time were that we'd gotten it all. He was just that thorough ... wanted to hit all the bases.

Anyway ... nobody can know for sure, of course. It scares me that they seem to stop tracking folks after five years. I've hit that point, nearly, and what does that mean? That we're good to go? That we're not good to go? Or more likely, that nobody really knows. None of my doctors ever worried about giving numbers (not the good ones, anyway ... had one scary guy try to give numbers in the beginning, yikes!). You're right, that does seem a really weird way to word things. Is it possible to have the doctor clarify what he meant? He's the one in the best place to give reassurance, or at least backtrack if he misspoke. He's the 'authority' in this case, so the one best placed to give comfort, since he's the one who introduced the fear in the first place.

That's a bit rambly, but ... you're not alone (or your dad isn't, anyway) ... no matter what they say, it comes out scary. Maybe this doctor can rephrase things and sort it out better.
Posted By: gmcraft

Re: Dad - 05-13-2019 10:45 PM


I’m sorry that your dad’s doctor was not more sensitive in discussing his treatment. Personally, I always remind myself that the prognosis is at best an educated guess and many things may happen that may change it. Like my husband’s RO said one time, if we were told that 2 out of 10 patients had problems with a particular treatment, before getting upset, we needed to remember that 8 out of 10 patients did not get a problem. I’m not entirely sure what your doctor really meant by 30% of patients are still around after 2 years, etc. What was she saying about the other 70%?

Maybe you could further explore the possibility of getting your dad another kind of chemo (immunotherapy is a kind of Chemo) or the chance of his being accepted for a clinical trial. Keep talking to the doctors and express your dad’s willingness to continue with treatment. What you can do now for your dad is to advocate for him and get him the kinds of help that he needs.
Posted By: ConnieT

Re: Dad - 05-13-2019 11:01 PM

some docs have little bedside manner. one of my friends was told by his doctor that he was going to die. bluntly said that to him. so of course, my friend continued to drink and smoke. why give it up with that kind of news.

there are better ways to say even hard things. too bad some just don't have the interpersonal skills developed yet.
Posted By: Vicky1

Re: Dad - 05-15-2019 01:59 AM

It was really upsetting. In fact, it makes me wonder if she knows what she's talking about. She hasn't gotten all the information from his surgeon yet. Why is she assuming he's going to die? It really took the wind out of his sails, too, and he has been struggling as it is to be upbeat with the loss of income, the pain, the quality of life he has lost so far, etc. I'm angry today about it, but still scared.

She is supposed to call with her recommendations. I just don't understand. His surgeon asked if we wanted to meet with his medical and radiation oncologist before we went home, but said it's something they do whenever someone has a recurrence and that he would be surprised if they recommended anything, except perhaps an experimental treatment like immunotherapy. He said he couldn't speak for his oncology team but he said they would likely not advise re-radiation (or re-irradiation... not sure the right term) because it was a small tumor, clear margins, no lymph nodes involved and they caught it super early and were really aggressive removing even the dysplasia.

What would you do if this was you? Should I hear what she says and seek a second opinion? I am worried because it has been 4 weeks since surgery. There's got to be a window of time to decide what to do...
Posted By: KristenS

Re: Dad - 05-15-2019 03:59 PM

Go ahead and start looking for the second opinion, if she's dragging her feet. They always seem to leave a window of time between surgery and radiation anyway (so there's healing of the surgical site), so you must have at least that much time to work with.

((hugs)) Wish we could all do more for you.
Posted By: gmcraft

Re: Dad - 05-16-2019 01:18 PM

You can also call the doctor and ask what her recommendations are after she’s spoken with the RO. Doctors sometimes are so busy that they forget or they are thinking, “I’ll do it tomorrow,” and don’t get round to it. Keep them to their word. Even if it is leaving a message with the secretary, it may goad the doctor into calling you back.

Immunotherapy is no longer just a trial. It is now marketed as Keytruda and Optiva. There are always trials out there although the patient has to be screened before being accepted into a trial.

I would go for a second opinion as Kristen suggested, even if it is to hear about another treatment plan. It will give you options.
Posted By: Vicky1

Re: Dad - 05-16-2019 09:44 PM

To those of you who had a recurrence, what did you do after your second surgery? Did you have more radiation? Did you do immunotherapy? Did you do nothing more?
Posted By: PaulB

Re: Dad - 05-16-2019 11:16 PM

I’ve had 6 recurrences, plus the original cancer. Each time was it was different. My first recurrence, I had radiation only as I was too sick to to anything else, and didn’t fully complete my original cancer treatment, which was supposed to be induction Chemo followed by chemoradiation. Actually, I left my top cancer center after I was in the hospital/nursing home for 6 months from induction chemo, and went back to my original oncologist.

My 2nd, I had cancer surgery only as treatment, neck dissection, mbeing too sick per my radiologist and oncologist, and thought it with be enough. This was back at the cancer center. I kept my ENT from there, but ditched my oncologist there.

My 3rd, I had cancer surgery only. Neck dissection.

My 4th and 5th, I had surgery, neck dissection, with IORT radiation in the OR, and then IMRT and Chemo, Cisplatin and Erbitux, epidermal growth factor, at a different cancer center on my own request. My other cancer center I felt didn’t proposing enough treatment.

My 6th and 7th, I had surgery, neck dissection, and IORT in the OR followed by Proton Radiation and chemo, Cisplatin.

I guess each case is differentso as is the doctors. You can go to three at different and get three different answers.

Posted By: Vicky1

Re: Dad - 05-17-2019 01:11 AM

My goodness. I am so sorry you had to go through all that, but glad you are still here. This actually makes me feel a little better. I am still beside myself with worry, but maybe they're not going to just let my dad die, and maybe radiation isn't the only thing to do.
Posted By: PaulB

Re: Dad - 05-17-2019 02:58 AM

I’m sure they’re going to do the best they can. It’s just sometimes there may be some with difficult patients, different types cases. are usually more experienced in tgeae cases. It’s always good to get 2nd or even 3rd opinions without taking up too much time to choose. o w to be chose.

I’ve been turnedown for treatments a number of times, including that of the #2 rated hospital who is sometimes #1. Luckily, their not the only ones in this town, and can go anywhere!

I’m Cancer Free now after 10 years of cancer treatment
Posted By: KristenS

Re: Dad - 05-17-2019 09:10 PM

I don't think I could possibly say anything after Paul's exhaustive list. smile My first occurrence was just surgery, and the neck dissection to see if it might have spread in spite of the scans saying otherwise. When it came back that same year, then they wanted to hit it with all the radiation and chemo, after repeating the surgery. I think the surgery actually got it, and the radiation and stuff was just for their peace of mind more than it was for mine. But who knows. I'm here to talk about it now, which I suppose is what really counts. If it ever comes back, we'll figure out what to do at that point ... having been here for awhile, I know there are always other options to ask about, which is reassuring.

Posted By: Vicky1

Re: Dad - 05-21-2019 10:24 PM

His radiation oncologist called today to say that because the surgeon got clear margins they werent going to recommend more radiation. She said that he is at a high risk for recurrence and that he will need to be followed really closely. If it comes back, she said the treatments available will be further surgery or chemo for palliative care. Again, she said that the survivorship is very low.

I got her call right after I left a meeting where I found out I am being laid off tomorrow, so I couldn't even process. I am glad he doesnt need to go through another horrible treatment, but am very worried it will recur again.

I want to puke.
Posted By: ChristineB

Re: Dad - 05-22-2019 12:37 AM

When it rains, it pours! Im so very sorry you have gotten terrible news regarding your fathers condition and been laid off on top of it.

I know its not easy to avoid worrying about your father. Try stay busy with positive things that require concentration like reading a good book or working on a hobby. Keep reminding yourself your fathers surgeon got clear margins.

Posted By: gmcraft

Re: Dad - 05-22-2019 12:55 PM

Please don’t fret about a recurrence. With medical advancement you never know what treatment will be out there in a couple of months. My husband was in a phase one trial for immunotherapy. At that point (back in 2015), the drug had only been used on monkeys. I believe by 2017/2018, the drug had been fast tracked and put on the market. There is so much research ongoing that the next treatment may we’ll be just around the corner.

In the meantime, please take comfort from the fact that your dad doesn’t need more treatment at this point. This will give him a chance to build up his strength and take the time to enjoy the things he likes to do. You can also take this time to make new memories with him/to add to your stores of good memories.
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