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Chemoradiation Alone?
Hello Everyone,
I just joined the group and been really lucky to have been following the past few months and reading about other survivors experiences or people going through the same. It has given me hope.
My mother 68 was diagnosed with Squamous Cell Carninoma in November, this came as huge shock just like it is with everyone else. She started Chemoradiation in December and finsihed end February, Carboplatin + Paclixatel and 27 rounds of radiotherapy, she managed to finish 3 out of the 5 chemo rounds due to severe low white blood cells counts and platelets.
Its been a very difficult journey and was bedridden since January. she's had difficult swallowing, she's on liquid diet since November, she refused the tube and has been able to swallow with pain but her intake has severely reduced. She is slowly starting to get her head up this week.
My mother is very worrisome of the surgery and I was wondering if there are people who have only been on chemo radiation and cured.
I'm her only caregiver and I want her to make an informed choice. I read somewhere that one shouldn't delay surgery after radiation, as the longer the surgery is delayed the more difficult it becomes due to the tissue damage from radiation, has anyone had any experience with this or how long did you wait after chemo radiation to have surgery? She will have her first scans next week since treatment ended.
Wishing everyone strength, my mum remains positive through it all and it has been calming and inspirational .
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Hi, and welcome! My husband was originally diagnosed with stage 4 squamous cell carcinoma of the distal esophagus in 2018 at the age of 55. Not eligible for surgery or radiation at that time. He did 2.5 years of chemo alone and went into remission for almost 4 years before having a recurrence in February 2024. This time, they did what sounds like the same regimen your mom had, 6 weeks of chemo (carbo/taxol) and 28 radiation treatments. He had a lot of trouble after finishing radiation, unable to swallow again, wiped out, etc, miserable. He was hospitalized about a month after RT ended and had a rocky road for awhile but the treatment was successful and he is once again in remission! There's an EC Zoom group that meets every Sunday morning 9-11 EST and then again on Wednesday nights from 6-8. Excellent group of wonderful people, patients and caregivers from all over. If you're interested, please join us. I'll try to post the link, it should light up in blue. If it doesn't work, go to smart patients.com and search EC Zoom meeting for the link. Best of luck to you and your mom. Feel free to PM me if you want to chat. Take care, Lynn
https://us06web.zoom.us/j/4550284795
Hi... my name is Gary and I'm one of those who run the twice-weekly EC Zoom calls. Lynn has been with us for some time. She and Jeff are one helluva team... with such a unique EC journey to date. I too did the CROSS protocol like your mom, of Carboplatin and Taxol with concurrent radiation treatments, in 2020... during Covid. I did go on to esophagectomy in July 2020... and I'm no longer being monitored by my oncologist. He dropped me last August since I was more than 5 years post-op and still NED. I suppose I am now deemed Cured.
If you'd like... let's start with a chat, and I'll tell you what I know and what I've seen since I've talked with about 400 of my fellow EC patients. I don't have an agenda with talking mom into having the surgery... or not having the surgery... that is her decision to make. And if you are at any of the Mayo sites across America... then she will be in good hands. I've talked to probably 25 patients at various Mayo locations.
Gary
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@cometsmom I'm one of those who opted against the surgery. There were two factors - age (85) and the tumor was confined within the esophagus, with even the regional lymph nodes not affected. I also had to discontinue after three sessions, because of allergic reaction to one of the drugs, probably the carboplatin. I also had great difficulty, with scar tissue essentially closing my throat with periodic spasms. I had had to have a gastric tube installed, because of weight loss. I was able to eat some soft foods, but most of my nutrition came from the tube, which has now been removed. I completed treatment back on 5/15/'25. I have had three dilations, which have helped, and have a couple more scheduled. My research seemed to show that, with my situation, surgery would not have improved my survival chances any and would have introduced more complications. It's a very personal decision. Just gather as much information as you can...
You don't mention why your Mom doesn't want tube feeding, but it is understandable given the nature of it. I was on tube feeding for 30 days prior to eating soft foods and then a relatively normal diet. The challenge of course is her weight loss and strength loss, particularly while on treatment and fighting this disease. If she does choose surgery, there most likely would be a 45 day window to heal and gain strength prior to the surgery. Possibly, there's something different in your Mum's case. She's a young woman yet and needs her strength to fight this battle. I'm hoping she'll change her mind and go on tube feeding. BTW, I'm 67 years young and had chemo radiation and the tumor did go away. However, I felt that surgery was the best option for long term recovery. I also had adenocarcinoma, not Squamous cell. Best to you both with your treatment.
@cometsmom
Lynn thank you so much for sharing such an inspiring journey. I wish him well. Thank you for also sharing the resources available and community. I will definitely do my best to join the meetings.
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I think she doesn't want tube feeding because of fear of the unknown, luckily she's been able to keep down liquids throughout and I do my best to make a plan for her nutrition and try to give her lots of protein, it was however challenging the last weeks of treatment. She is getting better since last week but still afraid of even trying solids or even soft foods, did you have this fear during transition?
It is already 55 days since her treatment , and she is scheduled to have her first scan this week. Hopefully she will able to make up her mind after the results once she knows the outcome of the treatment.
I'm happy for you that even after the chemo radiation worked, you were able to quickly decide that surgery was the best option.
I wish she had that sort of clarity. I imagine its just not an easy journey all together.
I will continue to do my research. I have read some trial outcomes on salvage surgery etc.
I don't know if this is relevant. But she was told she has stage 3, and spread to one lymph node. No further metastasis.
Thank you so much
@earle Thank you for that insight. I'm sorry to hear you went through great difficulty. I hope your weight is slowly stabilising and you are able to eat solid foods as well after the dilations?
I will try to continue gathering more information, so that I can share with her. As much as I 'd like for her to have the surgery, I have also come around patients sharing their experiences about how difficult the recovery is and some risks as well. Anyway, as much as I want her to recover and be around for as long as possible , I want her to make an informed and independent choice. I have also come to understand that every patient reacts to treatment differently and that this disease is truly unpredictable, I have decided to leave it at God's hands mostly.
@mrgvw
Hi Gary,
Thank you so much. It will be very helpful to have the chat, I will reach out to you. I haven't spoken to anyone with first-hand experience outside my post here.
@butterfly58 My weight is stable now. I gained about 10 lb back on tube feeding. I'm where I should be, which is about 20 under where I was when dxed. I eat normally now, but I will have one or two more dilations in order to feel totally comfortable. My opening is still on the tight side. I lost the 30 lb originally because I also resisted the tube until it was obvious I had to have it.
I had my latest PET day before yesterday and, as far as a scan can tell, I got a complete response to treatment. There is no sign of cancer in my esophagus and my lymph nodes. However, I have a tiny spot in my upper left lung lobe which showed increased activity. Originally, the doctors thought it was an anomaly from aspiration or the like. Now, however, it must be treated. Fortunately, the treatments are non-invasive, lasers or CyberKnife, just a few sessions. However, I'll just do as you've decided, and as I decided long ago - I'll leave it in God's hands...