Linitis plastica

Dear Dingledee,

Thank you for reaching out to us here at the Macmillan Cancer Support online community. We hope you find this a warm and welcoming place to ask questions and seek support. I’m Kirstine, one of the information nurses here. I’m sorry to hear that your relative has been diagnosed with linitis plastica and can appreciate what a worrying time this is for the family. A cancer diagnosis in a loved one can bring on a range of difficult emotions, especially if you may be involved in supporting that person.

Linitis Plastica is a rare type of stomach cancer that might be treated with surgery to remove the stomach (gastrectomy) if the person is well enough for this and may require follow up treatments such as chemotherapy or radiotherapy. I have found some good information on the Cancer Research UK pages that I hope may be useful for you.

I’m not sure what type of information you are seeking today, or when your relative is expecting to speak to the hospital team next. I hope it’s helpful to know that anyone diagnosed with a cancer should have access to a Clinical Nurse Specialist at the hospital, who works closely with the Consultant and the rest of the Multidisciplinary Team. They are often the best point of contact for your relative to reach out to if they need to find out information on next steps, or relay any concerns or questions they may have.

If it would help to reach out to chat things through in more details, our team of friendly nurses would be happy to talk things over via our dedicated Support Line. Guts UK are another support organisation who may have good resources. We also have a couple of online forums that may be of interest. Here I can see a few people have chatted about linitis plastica already. We also have stomach cancer forum, and a family and friends forum for additional support.

With kindest regards,

Kirstine – Macmillan

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf/ SA

Hi, 

My mam completed reduced dose of chemo Folfox over the summer. Consultant today told her she is too frail for total gastrectomy.  Cancer has not spread. How long will this last before spreading?  

Hello Dingledee,

Thanks for getting back in touch.

My name is Carole and I’m another of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I’m not sure from your post if your mam had expected to have surgery, after chemotherapy. Changes to treatment plans can be disappointing or upsetting, but doctors must recommend what they think is best.

If it would help to talk to us please don’t hesitate to give us a call. We often find that we can give more detailed information, and the best support after speaking on the phone, as it allows us to ask questions about individual situations.

It’s understandable to want to know what is likely to happen with your mam’s cancer, as she is too frail for surgery.

This is a difficult question for us to answer as everyone is different, and every cancer behaves differently.

We’d encourage your mam to get back in touch with her hospital team, if she feels she has unanswered questions. It’s common to think of questions to ask, after an appointment. Her team will understand and should be able to arrange another appointment.

The consultant may be able to say what they think is likely to happen, but even for experienced doctors, it can be difficult to say how quickly a cancer is likely to spread.

We understand how difficult it can be to cope with uncertainty.

Sometimes it’s just as difficult for family members as it is for the person with cancer.

Our booklet, ‘How are you feeling? The emotional effects of cancer’ is for anyone who has been affected by a cancer diagnosis and contains tips which may help with coping.

I hope this is helpful.

Sending best wishes,

Carole

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

Our ref: PN