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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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@lionsfan
Did they perform a mckeown surgey or ivor lewis? I'm also wondering considering your chemoradiation worked, why did they still administer immunotherapy?
Thank you for sharing and also your resilience and optimism gives me hope. My mother is not as fit, but I think should she take the journey, she could manage. I'm still trying to share all this information for her to make up her mind. The surgeon has suggested to do an endoscopy first, post her positive first pet scan results.
@butterfly58
Hi there,
They performed Ivor Lewis surgery. The immunotherapy question is a good one. Although the pathology testing showed no cancer, clear margins, HERS 2 negative and nothing in the lymph nodes, they still had me go through immunotherapy. Initially, I was diagnosed stage 3 locally advanced, but after surgery, a different oncologist said that I was stage 4 because micro cancer cells were on the removed tumor and one lymph node. Since I was on a Folfox clinical trial, I believe they were adamant to follow the pre-determined protocol of chemo radiation, Ivory Lewis esophogectomy and Opdivo. Frankly, Opdivo caused a lot more problems than it solved. Although, I guess I'll never really know? Will the surgeon try to remove the tumor via endoscopy or are they just taking a look? Also, it's helpful, I'm happy to answer any questions via phone too. 262-510-9883. Take care.
@lionsfan
I'm glad everything went well eventually, yes I have also found out that they sometimes find out during surgery that cells had spread. It's such an unpredictable disease.
My mother had a Pet Scan two weeks ago, and it showed that there was no evidence of disease except a 0.8cm thickening which they couldnt rule out from the pet scan whether its residual disease or scar tissue/inflammation from the disease. She has been adamant about the endoscopy , but I've managed to convince her and she'll get one this Wednesday. I think she has somehow decided to try the surgery if they find out there is residual disease. But, I worry for her a lot. I guess this week will determine the course of her next steps.
I would love to reach out if you have Whatsapp etc. We are based in Kenya.
Thank you for sharing your experience, it makes a huge difference hearing from someone who has been through the journey.
@lionsfan
You're brave and right that with this disease, we'll never know! It's good to do everything you can. I read somewhere that indeed surgeons sometimes catch other things during surgery which were not identified pre-surgery. My mother went through a post treatment pet scan two weeks ago, it showed that her tumour had significantly shrunk and there was 0.8cm thickening still with very low uptake, they couldnt clearly state that this was residual tumour, they also though it could be post-treatment inflammation/scar. I guess the next step for us to really know is to do an endoscopy and biopsy, my mother was adamant but I have managed to convince her that its less invasise than surgery as a next step. She has somehow agreed to do surgery should there be residual tumour, I worry for her though considering all the things I have read.
This week will be quite decisive for her.
Do you use Whats app? we are currently not living in the United States.
Thank you
@butterfly58
That's good news on the tumor reduction. I've had multiple endoscopies and they were no problem. The anesthesia they use is very good and has no lingering side effects. You don't feel or remember a thing. I hope they get negative results on the biopsy. I don't use WhatsApp, but please feel free to send me any questions or comments. I'm happy to help if I can.