Has anyone decided not to have surgery after the first round of chemo?

@earle

Hi,

Did you have any treatments? My dad is 85 and is scared of the radiation and chemo treatments. He is opting for hospice. But with the VA he can also have treatments so I am wondering how you tolerated either of those. Surgery is not an option for him because he is 85.

Joe, I had 5.5 weeks of radiation at MD Anderson. 4.5 weeks were proton, because of pent-up demand, their machine having been down for maintenance. I also had three weekly sessions chemo, but I reacted badly to the third session, so we terminated those. Mine was squamous, stage III, confined to the esophagus. I was offered but declined surgery, mainly because of age and the possible length of time it could take to rehab from it. If your dad is considering hospice, his diagnosis must be quite different from mine...

@joe6000, I hope you saw @earle's helpful post.

Joe, what did your father decide? Has he chosen to try treatment?

@earle
He was diagnosed as Stage 2. Cancer is at the junction between esophagus and stomach.
He was offered 5 weeks of radiation with weekly chemo.
It just sounded like too much. He has other complications asbestos damage to his lungs and diabetes.
He feels pretty well right now so he’s chosen no treatment and hospice care was also offered.

@joe6000 I'm terribly afraid that is a decision he'll regret. Is he showing signs of depression, because that surrender sounds to me like it's born out of that. My cancer was different, squamous, about 1/3 of the way down. But mine was more advanced - Stage III+. (I forget the rest, but the "+" was because of a "suspicious" distant lymph node, which turned out to be nothing, so really just III.) It also was completely confined to the esophagus. It sounds like he has an excellent shot at a complete cure. I had 5.5 weeks of radiation - one of IMRT, because their proton machine was backed up owing to a down period of maintenance, and 4.5 weeks of proton. I had 3 weeks of chemo before having a bad reaction to one of the drugs. My esophagus and lymph nodes are, as far as they can tell, cancer-free now. I do have a tiny spot which fluoresces under PET far over in my left lung, which they do not believe is cancer. Nevertheless, it dictates more frequent PETs and monitoring. I don't regret one moment of my treatment. From age, I have comorbidities also. I have left hip replacement scheduled for 12/16, my 86th birthday, for example. (Indirectly the way my cancer was discovered.) I know that Hospice's guidelines are much more lenient than they used to be (formerly 6 month to probable termination), but I'm frankly surprised it was offered in his case. He will not feel "pretty well" towards the end. My ex-wife passed from adeno in exactly your dad's spot and it was pretty bad towards the end. I think you should at least urge him to see a therapist. In my case, my "hometown" oncologist, also a close friend, looked me in the eye and said "Earle, you can whip this!" Those words have stuck with me, because he's not the type to blow smoke. It may be that all your dad needs is a third party delivering a similar declaration to him. Don't give this up yet!

My mother was diagnosed at age 70 very healthy otherwise, and considering not doing surgery due to fear of complications and decrease quality of like afterwards. I think it would be helpful to hear and discuss with others who have walked this path!

@haileybdl I’m 6wks post surgery. My situation was more complicated because I had a gastric-bypass 20 years ago. I am also 70 in relatively good health prior to cancer diagnosis last July. I’ve had 4 rounds of FLOT and immunotherapy. The chemo treatments were effective BUT the surgery probably saved my life. I was T3N1M0. They removed the tumor most of my esophagus/gj. The doctors were convinced that they could find my original stomach and reattach it as my new esophagus. Yes surgery is hard. Very hard. But my family wanted a fight. Side effects for me were minimal. My surgery was minimally invasive laparoscopic. I have 15 little holes in my abdomen and side but they are almost all healed. I had no pain. Never took the Rx for pain. Everyone is different don’t give up because of fear or worse the anticipated what ifs.

Hi Judy
Your husband may have made his decision by now, but just wanted to share my experience. I dont think you mentioned his age, sorry if I missed that.
I was diagnosed in Nov 2024, it hadnt spread then, but was large and looked like may have broken up. I was 44. I had been having a lot of pain eating for 4 months, and by that point started choking on food. They put a nasal tube in, which helped so much. It eased my tube and gave me nutrients after losing probably 3 or 4 stone before diagnosis.
I had 4 rounds of FLOT chemo before the operation. It was hard of course, but there is a lot of medication and advice to help get patients through chemo.
The chemo significantly reduced the tumour enough to remove my nasal tube in time for our pre-planned wedding! It was crazy, but beautiful. No hair at all even my eyelashes, but everything fake noone knew.
Yes, I was also terrified of the operation and treatment. As others have said, personal situation and age makes a difference. But I didnt want to die, and I knew without it that would happen as the tumour is aggressive in the esophagus and I wanted to give it my best shot.
4 days after the honeymoon ended, I had a full esophageal surgery laproscopic. The tumour had spread into part of my lung, and was right next to my heart, which they couldn't see prior to surgery. It literally saved my life! The surgeon spent 17 hours doing everything he could to get everything out. They removed the tumour, including a sliver of lung and 2 lymph nodes where it had spread.
It was a tough recovery, but I got up and moved a tiny bit every day. My mum posted our wedding photos on the hospital wall which gave me hope. If I could be beautiful and fight for that day, I could fight for my life!
About 4 days in, my throat incision got infected. I had a j tube in anyway, standard practice here for this surgery as you cant eat afterwards for a little bit due to throat sore etc. That ended up staying in a lot longer-6 months! But that is really rare, normally a few weeks or so. My neck was a bit troublesome and wouldn't heal!But I was fine, other scars healed, did my radiotherapy and a bit more chemo and it healed in the end.
Now I can eat! Small meals often and chew well, but its pretty amazing. Just had my CT after a year, still clear. I excercise regularly and just competed for the Cancer Society in their dragonboat!
Its absolutely personal, but just wanted to share some hope. In my case I wanted to make my decision for my health and prognosis, as fear can send anyone in the wrong direction.
I hope your husband feels supported by the medical team, has all the information he needs, and you also have support. My very best wishes to you both
Leila

Hi Leila,

thank you so much for your response. I am so glad to hear your story and am totally happy for you. My husband is 74 yrs old and did decide to have the surgery. Things were a bit complicated and that meant a hospital stay of 3 weeks and then home health care for a few more. We are 3 months out and he is 3/4 of the way through another round of chemo. He's looking good, can eat most anything he wants and is doing well. A discussion with the doctor about not doing the surgery was really instrumental in the decision to go through it. Although its an ugly surgery, we had to have the J tube replaced once (we plugged it up solid somehow), and this 2nd round of chemo is tough, he's alive and kicking. Doing well actually. We're taking it one day at a time and look forward to each step leading us to a positive outcome.

Congratulations on your marriage! We will celebrate 50 years in September.