My mum has stage 3 oesophageal cancer, which miraculously has not spread to her organs or lymph nodes. She is due to start chemo soon and will have 2 rounds of this and then 25 shots of radiation. She has decided she does not want the operation as she is too worried about the risks.
She is now struggling to keep anything down, even liquid due to the tumour blocking the way. She doesn't really feel sick, it just won't go down.
She's worried how she would keep the chemo tabs down even if dissolved. Will they have an alternative?
I am doing all I can to support my mum, but cannot attend appointments with her due to my own arthritic illnesses leaving me housebound. I feel awful that I can't go with her or do anything physically to help. I feel so scared and sad for her. Obviously I don't show this because I don't want her to worry about me.
She's due to see the oncologist later today for the results of a biopsy taken from nodules in her stomach.
Sorry to off load but I don't know where else to turn.
Thanks for reading,
Jenny
Written by
Jenlouh
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Very sorry to hear that your mums experiencing such difficulty with swallowing, you don't say how old she is and I was wondering if her age was a factor in her deciding not to have the op'. I was 72 when I had my op' but I didn't have chemo' as my cancer was caught very early on. I just wanted to say, that although her cancer is at a different stage and there may be other things to consider, I wouldn't let age be the only deciding factor. I had my op' in March 2012 and had all the usual 'side effects' associated with it - elements of which - 'for me', lasted intermittently for about seven months but since then things have continued to improve to the point where I can now eat only 'slightly smaller' normal meals. I occasionally have a dumping episode - though usually only after too many sweet foods, or too many dairy products - and only then because I've got so used to not having any problems that I've had a bit too much of the baddies. I don't know if any of this is of any use to you but I do hope things go well for you and your mum.
Thankyou for your reply. Mum is 74 and in reasonably good health and fit otherwise. The tumour is quite close to the heart apparently, but the oncologist has said they could do the op if she wanted to but warned against risks, which I think is standard anyway.
I sincerely wish you could persuade your Mum to conquer fears and take the op. Despite the odds, the procedure is never an option without there being a clear indication of its success: the harsh fact is that a cash-strapped NHS needs a quantifiable ROI. This site is proof positive of the efficacy of the procedure, the majority of the voices here being those who have undergone it and are living testimony. There are compromises and difficulties on the other side of the op but they are insignificant in the light of a new lease of life.
I was told all the risks also, but decided to go ahead..im SO glad did., Operation was fairly straight forward, pain was well managed,.. and had the usual post op problems, but nothing too traumatic. Now 2 years post op, and feeling good most of the time, (not all the time, but hey "that's life") I'm not advising you one way or the other, but this is my story, and if i needed to go through it again i would.
I would also urge your mother to consider the surgery - like her I was stage 3, i have several other medical conditions that made it more difficult but the chance of not looking over your back even if post surgery has it's challenges. I had stays in hospital for my chemo. I was diagnosed around now 10 years ago (will be having a big celebration with my 5 and 6 year old and husband that I married 2 weeks post chemo.
If they are prepared to do the surgery (you say they are) then this has to be the way to go and she should do so. Chemotherapy is "unlikely" to provide a cure where as surgery may well give a cure and a very high quality of life. There are many on here who have undergone the surgery in their 70's and now inspire us with their lifestyle. Your mum is otherwise fit & healthy? Then this will help in her recovery from surgery.
It is standard practice for the doctors to warn of the issues associated with this surgery. I personally viewed it as "kill or cure". The care that you receive is fabulous and the understanding of this type of surgery is now very advanced and improving every day (partly through sites like this).
As soon as she starts chemo the better as it reduces the tumour and ability to swallow fro most people within a cycle or 2. I could barely swallow but managed a high nutrition soft/liquid diet (fruit and veg smoothies , porridge with organic milk and organic maple syrup - anti cancer fighting properties, organic soft scrambled eggs with runny avocado, chicken and veg soups freshly made and organic Rachel's full fat yoghurt and fermented kefir as the only thing your immune system has is nutrition). I had no sugar as has zero benefit and does not help your body.
After 3 rounds of CAPOX (oxaliplatin and capecitabine) chemotherapy I could eat almost anything. Chemo reduces the tumour. I then had 5 rounds of weekly chemo (TAXOL with CISPLATIN) and 25 rounds of 1.8 Greys of radiation known as chemoradiotherapy. I could not eat for 3 weeks of radiation and for 4 weeks afterwords and lived on fortisip, ensure and fresubin drinks for 7 weeks. I could then eat everything and anything which I did (80 percent healthy and 20 unhealthy to gain weight).
I had 3 stage 2 field lymph removal Mckeon minimally invasive I am now 8 days post op ( I won't lie it's been excruciating) but women much older than me (53) have survived. If your mother has an adenocarcinoma and not squamous cell (SCC like me) there is no radiation but post operative chemo. If she has an SCC she can have definitive radiation ( more greys) instead of op. However, Surgery seen as gold standard.
I wish you both the best. Trust me arthritis is a walk on the park compared to OC - I know - have both.
I would go along with all the above comments - if your Mum has been offered surgery, it is the best route to take as so many aren't able to have surgery. My husband was stage 3 the plan was chemo surgery chemo. Unfortunately he was one of a very small percentage (5 per cent) where the chemo ended up making him very ill. On recoverey he had the op and was in for 7 days and really never looked back. Even with his weakened position and the risks involved he came through it. He was 66. Life is different but 2 1/2 years on he is enjoying life and although there are ups and downs they are a small price to pay. Sue
Thank you all so very much for your replies. I will do all I can to persuade her to have the surgery. She has now started the chemo and needs to have her anti sickness tabs reviewed as she is feeling very sick at the moment. She is barely eating anything and milk products make her even worse. She is losing a lot of weight.
Hi I agree with above if they offer you the chance of the op it’s an absolutely petrifying option but it’s a chance.
There is an alternative to chemo tablets, I had a pic line and a pump.
I also felt very sick and could not keep much down at all.
I ended up with liquid versions of the anti sickness tablets which taste awful but they helped me. Also I found just sipping and allowing things to dissolve or soften on my tongue (ie ritz biscuits, Florentines, cheese and onion crisps, crunchy nut cornflakes) gave me a slight appetite.) I ate anything I fancied as any food is better than none. I also found the first week after the main chemo I ate hardly anything and then the second and third week of the cycle things improved.
Till the Tumor shrank I had liquid, slim fast drinks with added cream, they tasted better and had a much easier texture to swallow than other fortified drinks which made me retch if I smelt them. Fruit juices home made and shop bought. Soups etc. But it had to be food that cooked quickly smelt very little and in very small quantities for the first week of a three week cycle. ( my son ate ready meals microwaved and in the garden so I couldn’t smell them god bless him.)
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