Chemotherapy stopped

[Florrie58]

I'm writing for my husband who was diagnosed in 2017, he has 2 lymph nodes involved so surgeons won't operate, they have stopped his chemotherapy as one of the lymph nodes has grown and resistant to the treatment. We are desperate for help and wondered if anyone has any experiences of medics who will attempt further treatment.

[gutlesswonder]

Hello Florrie58

This is very concerning.

What was the diagnosis back in 2017 and what have they been doing in the interim?

The treatment you receive inevitably varies from centre to centre and one has to be realistic and appreciate that the NHS is subject to rationing, which is a function of available funds. What hospital are you attending?

To not try a different combination of chemo and/or surgery on the basis of only one node does seem precipitate.

You are entitled to a second opinion and could seek referral to another centre once you have all the facts. These decisions are generally made by a committee but if there is a medical justification ( IE realistic possibility) and you can find an individual to champion your cause then this is achievable. Your husband's age, general fitness etc, etc will be relevant.

I speak from personal experience.

[Florrie58 in reply to gutlesswonder]

Hi, thanks for your reply. We have had treatment and chemotherapy, it just seemed too long to list everything here. We have been happy with the care we have received, everything has been done fairly quickly, communication has been excellent but we are definitely looking at another opinion further afield as we are a bit out in the sticks in Cumbria.

[Tlynn89]

Hi Florrie!

I am sorry to hear of your situation. I send my prayers and warm thoughts. My advice is get a second opinion, or a third even. Where do you live? In the US, there are physicians who offer varying treatments from surgery, radiation, chemo, new drug trials, experimental surgeries, etc. I have heard of cancer patients even going to other countries to seek alternative treatments. I also recommend a holistic approach to diet and general health. Many swear by a holistic diet, acupuncture, combined with a lot of cleansing, green tea and even CBD oil! Wishing you the best in your quest for answers. Don’t give up! We must be our own advocates!

[Florrie58 in reply to Tlynn89]

Thank you, we are trying to eat and drink all the right things and we are looking for another opinion

[Paulbrighton]

Hi Florrie. I don’t know if you have insurance or funds but if I were you I would make an appointment to see a consultant at the Royal Marsden I consider them to be the top cancer specialist hospital in the uk and my treatment there has been incredible. I don’t know if you can be referred there under the NHS for your treatment but you could at least pay to see a Gi consultant for a second opinion. They may have a different view in treatment possibilities. When choosing a consultant you want one with a special interest in upper GI cancer. My Surgeon was mr Asif Chaudry and my oncologist Mr Ian Chau. Both with special interests in oesophageal cancer.

Good luck Paul.

[Florrie58 in reply to Paulbrighton]

Thanks Paul, will have a look at royal marsden

[Billings]

I think it depends on the overall staging . In Birmingham they will operate up to and sometimes including stage 3

[Florrie58 in reply to Billings]

Thanks for your reply, we have contacted a consultant at Newcastle and feel we have a little bit of hope at last

[Bunny69]

Hi Florrie58,

I was treated on merseyside in June 2018. I was told if it had spread only palliative treatment would be offered. So there was confusion as to what stage I was. If your husband was a candidate for Ivor Lewis procedure which removes a large portion of oesophagus and stomach this removes many lymph nodes for histology tests to decide how many are affected. I had 6 enlarged pre surgery, 24 were removed during surgery and 8 were found to be affected by cancer. At diagnosis your husband should have had a staging scan pet c.t scan or possibly endoscopic ultra sound to decide how far if at all it had spread. He would then go to MDT for a team decision on what treatment he should receive. My advice would be to get in touch with specialist nurse to find out what treatment is available now. If you are not happy ask for a second opinion. But do not assume you will automatically receive treatment as quickly as possible. We know as a family that things can be overlooked and sometimes a promoting of the medical team can kick start the treatment process. As you are in Cumbria you could contact Christies in Manchester or the local centre to me was Aintree in Liverpool. Mr Khan was my surgeon and I honestly couldn't praise him highly enough, dedicated with excellent team and follow up all fantastic.

I wish you and your husband the best care and a speedy recovery.

Paul

[Mrs1972 in reply to Bunny69]

Hi

I can only reiterate what others have said here. It doesn’t seem quite right that surgery was refused based on two lymph nodes. Don’t give up on there being more treatment.

I can second what Paul has said about Aintree, I recently had a total gastrectomy performed by Mr Shrotri and his team, I also met with Mr Khan when Mr Shrotri was on leave. I was told the only way it would’ve been inoperable was if other organs were involved. The care I received was excellent and quick.

Good luck, I hope you get more help soon.

Louise

[Andishine in reply to Mrs1972]

Hi.My husband has been told that his cancer is inoperable as it has travelled from the stomach lining,as opposed to down the oesophagus He has a lymph node elsewhere but none of his organs are affected,So was interested in what Mr Khan had said.Maybe we should be looking for another opinion ! although there have been various meetings between consultants from other hospitals in the area, (Bedfordshire/Cambridge )

[Florrie58 in reply to Bunny69]

Thank you, everyone has been so helpful. We have had a busy week and we have contact with someone at Newcastle so fingers crossed, we feel a little more hopeful

[timmey25 in reply to Florrie58]

I wish you good luck

[Spikey in reply to Florrie58]

I read somewhere that Newcastle is one of the top hospitals in the country for the treatment of Oesophageal cancer, therefore you should be in good hands. (And it's a lot closer than the Royal Marsden). Good luck.

[AlanWare]

Message me please.

[Horses444]

Find s European or Asian doctor or natrapath who will do Vit C therapy and many other treatments available there is a clinic in Turkey and another on Bangkok that has had great success have a search on the net O think the name is Vital life clinic they are opening one on Melbourne soon also

Good Luck

CJ Mudgee Aust