I am looking for some insight on second surgeries after treatments have failed. Is a small chance for cure worth the risks of a potentially aggressive surgery? Forgive me if this has been discussed elsewhere.

My mother is 72, but up until now, was a pretty active and youthful woman. Currently, she is in a lot of pain on a daily basis, and she's pretty run down from 3 weeks of FNA, bronch/chest biopsy, and a surgical biopsy. She has had a recurrence just 3 months after completing post-hemiglossectomy radiation and chemo. The recurrence now has been confirmed at BOT, very close to her flap. Her surgeon presented the option of another glossectomy surgery, since reirradiation so soon after her first radiation is contraindicated, and chemo was really tough on her hematologically and would not be curative anyway. He said that the surgery would be tougher this time around, with very slow healing due to recent radiation. However, he believed that there is a chance, however small, that the surgery could be curative, and she may well be able swallow again after she heals. We had a second opinion because we felt we should do that in light of the stakes, and after a thorough records review and a 30 minute appointment, the second surgeon indicated that he's not sure he would even consider doing her surgery, because although it COULD be curative, the surgery might have too great an impact on her functionally, and could result in a total glossectomy and maybe even a laryngectomy if she can't manage secretions afterward. He seemed to think it better to do chemo if she has something longer-range she wants to "live to see," or hospice and a morphine pump if she has nothing in particular on the horizon and is just fed up with the pain. He said there are trials out there, but he had none to offer at this time, and they would only extend her life by a few months anyway. I'm paraphrasing a bit, but this is what was communicated. She trusts and loves her surgeon and team, but after the second opinion, she has some thinking to do. Her surgery is scheduled for late next week.

I guess I know she has to decide for herself, but I wondered if anyone else who has struggled with a similar decision might have some words of wisdom.

Oh boy, this is a hard one. Not what one ever wants to hear.
It is alarming that this recurrence is so soon after her chemo and rads. Kris had his total Glossectomy and total Laryngectomy when he had a recurrence 10 months after his chemo and rads. But, he was younger. He was 59 and otherwise fit and well. He has had no other treatment. No further rads. No more chemo. 3 and a half years later he is thriving.
The surgery was brutal and did take him at least 6 months to recover well from. Do you think your Mother can cope with this? I really do wish your Mother the best and I am thinking of you both.
Tammy

Im very sorry that better options were not available. Its not an easy decision at all. Every situation is different but I do see similarities between mine and your mothers with this decision she has to make.

In 2009 I went thru something similar. It was my third round of OC in 3 years. My doc explained my chances were slim and that I should "get my affairs in order". I went back and forth on if I wanted to precede or just let nature take its course. I had children who depended on me and I figured its best to prepare them to go on without me than to die in the OR. When I had made up my mind to live the weeks or months I had left to the best of my ability, the members here changed my mind. They begged me to reconsider and asked me how I could quit before I even tried to beat it. That stuck with me and I decided in my situation its so much better to try to get thru it and live with the collateral damage than to not be here at all. That was 6 years ago.

My surgery was to remove my bottom L jaw bone. It was over 10 hours. I also had complications which left me disfigured. After such a major surgery to an area that already had radiation, I had to wait for a year to have more surgery. I will be honest and tell you my recovery was not easy at all. After a 2 month hospital stay, I finally went home and still was not in the best shape. I had visiting nurses for months, 8 months of IV antibiotics 3x daily and numerous HBO to help healing. It took me a year before I had any stamina. I had more bad days than good ones during that year. But even though it was hard to do, fortunately Im still here to tell about it. The threads of this are buried somewhere on the forum. I cant get thru reading all those posts without crying. Seeing what my son would post while I was in the hospital brings on the waterworks.

When you discuss your mothers options with her, explain that chemo will not cure her. It may work for weeks, maybe even months, hopefully for years. From what Ive seen of patients who have fast recurrences like your mother, its that in some patients this darn disease is very resistant to treatments and when it comes back it comes back with a vengeance. If she already had bad experiences with chemo then that option might not be a good one for quality of life.

There are a few clinical trials listed. Im sorry but off the top of my head I dont know if your mother would be a candidate for any of them, but please check them out. Im also enclosing a link to the government website where the trials are listed. Just because her regular doc doesnt have one doesnt mean there isnt one that might help her.

Wishing you and your mother all the very best with this difficult decision.


Several Clinical Trials under the OCF forum's General Section

Clinical Trials website

I feel so sad about the options your mum has, Horsegirl. I thought I would add my bit because at 69 I am close in age to your mother.My last surgery and rads were a year ago.

I feel I have lots on the horizon and certainly don't feel ready to let life go. I have a new grandchild due and feel I have learnt so much from cancer that I have something to contribute to the world. IF my situation was dire and the pain was terrible I hope I would have the courage to let nature take its course and face my mortality. But when there's hope? When you are still in pretty good physical shape?

Does age really come into it at this stage unless there are serious underlying health problems?

I'm saying this to give you another angle on the dilemma. As an older woman I would probably give the surgery a go, even though I hate surgery with a passion.

Just my personal take and remember I don't know the details:) Much love to you and your mother.

Thank you, Alpaca, Christine, and Tammy. All of your posts made me cry! Personally, if my mom has even a small chance to be "cured," I want her to take it. But I know I'm not the one who has to live it. I just don't think the guy with the second opinion really knows her as a person, and he saw her after a very rough couple of weeks of procedures and a 5 hour drive the day after her surgical biopsy.

It's hard-does she do bucket list stuff, but risk uncontrollable pain and knowing the cancer cells will be runamuck very soon and do whatever they want, or do we take the bull by the horns and go for the cure (which realistically would probably be postponing another round with cancer), but spend her valuable time at the hospital and at doctors' appointments? Yet, I see that you're here today helping my mother navigate this situation and being with your families, and I think my mom would think that's worth it.

Tammy, thank you for sharing what your husband went through. It helped me to think in a different way, and maybe to be a little more prepared to hear that my mom may just decide she's had enough, and she is not up for waking up in ICU all over again. Before, I couldn't even fathom her not having the surgery, and you've helped me see it's more nuanced. It's encouraging to know you and your husband are doing well, though, and I know you're a treasure to him and he to you.

Christine, your description of what you went through, and the thought of you reading your son's posts from that time made me sob. I know that you are beautiful and your kids are so glad you're here. I like your reference to deciding it was better to "live with the collateral damage than not to be here at all." And I agree that chemo doesn't appear to be a good option for her.

Alpaca, thank you so much for your input. It inspired me because it's almost like you're channeling my mother. You're at a similar place in life-enjoying grandkids, having so much wisdom and perspective to share with the world. There's so much value in that, and you articulated how I see my mom perfectly. I really think she needs to see your post.

She has a lot to think about, but this is so helpful. Thank you, and love and best wishes to you all.

You can print out this thread or any posts that you want your mother to read and give them to her. It could help her weigh all the options to make this difficult decision.

Im thankful for every single day! I have some issues which I will always have but to me it was well worth everything I went thru to still be here. In the past 6 years Ive probably helped several hundred patients and caregivers. Ive given hope to so many who had no had no hope at all. Sadly, not all of them have survived but most have. Ive lived to see my son get married and my daughter have my first grandchild.

If your mother has a zest for life and is normally a very active woman then Im sure she wouldnt want to miss out on any of lifes future milestones. (My personal opinion really doesnt matter but...) I hope she will decide to attempt the major surgery. No matter what she decides we will be here for you both.

Best wishes!

Thank you, Christine. You're so helpful. Before I posted back when my mom was initially diagnosed, I found your posts to be so very informative. It's clear that you are using every opportunity to help others navigate all this, and I'm so glad you were able to be with your kids at these major milestones.

My mom saw her surgeon today, but before that, I shared all these posts with her. She is very grateful for the input from everyone.

She's going to "go for it," as she said today. She talked with her original surgeon. He said that it is totally up to her, and although he can support any decision to forgo the surgery if she chooses to, he is willing to do the surgery. He said that he would discontinue the surgery if he found that it's more widespread than it appears and the risks far outweigh the benefits, but he believed that even if he couldn't get clear margins, the surgery would serve to provide her more time with less pain. Mainly, it appeared that she was concerned she would be a burden on us if she had surgery. We told her that she is no burden, and we love her. So, it looks like, assuming blood work, etc., is ok, she'll do surgery next Thursday.

Thank you again for your insight. The support you provide is so reassuring.

I am really pleased to read this update and hear your Mothers decision.
I would have made that same decision. To me, life is worth it and all the consequences. Kris initially said that he would not do the surgery, it was too extreme. But when we analysed and discussed it all, he wanted to live. It just comes down to deciding whether you want the chance of life or not. We all do adjust to and live with ,any consequences. Let me tell you, that for Kris and I , this was absolutely the correct decision . He has lived to see our eldest Son get married. ( and we have just learnt that we are to be Grandparents. But Shhhh. It's still a secret ) there is still so much joy in life and living.
Wishing your Mother all the best .
Tammy

Thanks for the update. What a great supportive daughter you are! Your mother is so lucky to have you in her corner.

Im glad the surgery is so soon. Hoping everything goes as planned and your mother has a speedy recovery. We will be here to help you both get thru this.

Best wishes with everything!

Glad that your mother has made this decision. Her surgeon sounds like a considerate and kind doctor.