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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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@butterfly58
Actually, I was looking forward to getting back to eating. I didn't have any problems initially, about 4 months post surgery, I developed gastroperesis, or paralysis of the muscles that move food through your new stomach. Doctors thought it was due to damage to my vagus nerve. Eventually, it got better and I eat small, but more frequent meals. Don't get me wrong, the recovery from surgery has been difficult and includes sacrifice, but I'd still choose the same options. I too was stage 3 advanced, so similar to your mom. Best to you and your mom.
@butterfly58, how is your mom doing? How are YOU doing?
@lionsfan
It sounds like a sacrifice indeed and you are brave. Do you still have some lingering issues from the surgery besides the frequent small meals? Also, did you have a robotic surgery or a traditional one? Thank you so much. I really hope she will consider surgery, but I must only support her through whatever she chooses.
@earle
I'm happy to hear you received such great news, and are also slowly gaining weight. Are you taking any reflux medications?
I wish you all the best and its also really reassuring that there are such non-invasive technological advancements.
@colleenyoung
Mom went through a PET Scan last Thursday, we were all very anxious. Fortunately, there is no evidence of metabolically active metastasis, and there is significant reduction of mid to distal esophageal thickening , it was 1.8cm before and now 0.8cm, they are saying this may represent post treatment inflammation, but they cannot rule out residual disease.
Also, we are based in Kenya and I had taken my mother for chemo-radiation in India. So, I took her for the Pet scan here in Kenya , but she doesn't have an oncologist here. I sent the report to the Indian surgical oncologist, and he said she needs to have endoscopy.
I don't know how soon the endoscopy should be done. I will try to consult some oncologists here in Kenya for advise.
I'm somewhat anxious that she might get sick the longer she postpones the endoscopy. She has refused the endoscopy for now as she is afraid that the tissue has not healed.
The surgery is also supposed to be done in India, if she accepts surgery. However, I do believe its better to go through the endoscopy first.
I will keep praying for the best, as it's not easy since I'm not the patient, yet I'm burdened with collecting knowledge and also organizing the next steps in her treatment.
Hello from Tasmania, I’m sorry you and your mother are facing this disease. She is the same age as I was when diagnosed - but mine was adenocarcenoma, the other type of EC. One of the difficulties you face is not knowing how things will play out in the immediate future.
While there are no doubt people who have survived without surgery, the chances of doing so are as I understand it, significantly smaller. The surgery is very invasive but tolerable and, providing you are otherwise in reasonably good health, you recover quickly in the first few months. Full recovery probably occurs over something like a 12 month period. Life is then different requiring elevated upper body to sleep and frequent small meals but all this is manageable. Nearly 2 years post surgery, my life is feeling pretty good.
There are numerous issues at play in determining if a patient will be offered surgery - staging of the illness (metastasis), how well the cancer responded to chemo / radiotherapy, general fitness, body weight etc. The stakes are very high and many including myself feel we have more living to do and want to give ourselves the best odds for survival. Having or declining surgery is a decision your mother will have to make, but having been through the surgery, I’d encourage her not to decline due to fear of the procedure or living with a rejigger alimentary canal - it’s manageable.
All the best to you both in this difficult time. Geoff
@butterfly58
I do still have times where certain foods are difficult to eat. Steak and chicken sometimes give me an issue and go down slowly causing discomfort. I just have to eat slowly. I get dumping syndrome sometimes, particularly if I have too much sugar at once. There are also times where I'm fatigued, but that is probably a long term side effect from immunotherapy. My surgery was robotic assisted, minimally invasive performed at Mayo by Dr. Steven Wigle. Despite my challenges, I'd make the same decision. I also think I'll feel better as time continues. I'm happy to help in any way possible if I can help further.
@lionsfan
Thanks for that insight. Did you lose significant amount of weight after surgery? were there any complications with your lungs after surgery or issues to do with the heart rhythm? Were you given another treatment after surgery i.e immunotherapy or chemo?
It's really helpful to hear your experience.
@butterfly58
I lost about 15 lbs initially post surgery and maintained there for about 4 months. I then got gastroperesis due to the vagus nerve being cut during surgery. This means that my muscles weren't contracting to push food down my new stomach. As a result, I dropped down to 138lbs from 160lbs. I spent 5 days in the hospital and eventually got better. I'm back up to 160lbs. I didn't have lung or heart issues post surgery, but I had issues after six months of post surgical Opdivo immunotherapy. The Opdivo caused hepatitis in my liver, pneumonitis in my lungs and glaucoma in my right eye. All of the side effects are rare however. I'm doing pretty well now. I'm a 68 year old personal trainer and also train myself 2.5 hours per day. I struggle some days with fatigue and an upset stomach, but overall I'm getting better. Again, I'd do it all over again as I'm optimistic going forward. It's definitely as much an emotional journey as physical, but a journey worth taking. I hope this helps and wish you all the best.