Can someone help please.

[Hopefullhetti]

Hi guys in July this year my husband (37) was diagnosed with stage 4 with mets (2 on liver (they said specks) and node on right lung (1.3cm) he had a 6cm tumor (which has been removed with a stoma for life.)

We had a consultant that told us multiple times "This is not a death sentence" "there's so many ways to fix this" giving us a list of all the ways. That consultant left the trust (UK hospital) the second consultant (who actually did the operation) also said there's hope and that's why he stepped forward to do the operation. Saying the cancer in the liver and lungs are "low level" (exact words) (letters state 'low grade') and they can be treated in many ways.

Then we had the appointment with the oncologist... He told us 6-24 months was the life expectancy for my husband. This absolutely blew us away as we were told since July there's so much hope. We've already asked for a second opinion but can the oncologist be right?

He said the consultants should never have given us that hope? We're so confused. Had anyone else been in this situation? Could the oncologist just be wrong?

Any words of reassurance or anything would be great thank you.

[zephyr]

I'm glad you've found a place to ask questions. So that you know, we are not doctors and are not qualified to give medical advice. For the most part, we are patients and caregivers just like you and your husband, but there's a lot of personal experience here. I think if you put us all together, we've seen it all.

We may not have enough information about the specifics of your husband's situation to give you any solid guidance, but know this: there are a lot of us here with lung and liver mets who have been around for years, decades even. Stage 4 is not the death sentence it once was, but it might be a life sentence. I don't say that to discourage or scare you, only to be realistic. Some people beat Stage 4, but most learn to manage it like any other chronic illness. Based solely on what you've written, it seems you've landed with a doom-and-gloom oncologist who has lost all enthusiasm. If possible, try to find an oncologist who wants to be your cheerleader and is willing to think about possibilities.

I'm sure someone with a lot more experience than me will be along soon. Meanwhile, it might help if you would give us an idea of what treatments have been suggested to "fix" it.

You absolutely have reason to hope: don't let go of that.

[crikklekay]

My husband’s oncologist likes to remind us that he is a person not a number. She stresses to focus on John, and the goal of treatment with curative intent. Your husband is young, and hopefully in good health. He should be able to handle the surgeries and whatever treatment he receives after, unless there is something medical throwing a wrench in things. Getting a second opinion sounds like a good idea. You want someone you’re comfortable with and can trust.

I wish I could give you more reassurance. The only similar thing we’re had happen is when a surgeon told John he was too fat to operate on so removing his liver met was a no-go. His oncologist refused to take no for an answer and found a teaching hospital over an hour away who had no problems removing the met. She knew removing it was his best chance of getting rid of it for good. So definitely get a second opinion!

[Pagola44]

Did something happen in that time? Did he not respond to treatment perhaps? Are you able to provide more information?

[I_will_fight]

Welcome, and sorry about your husband´s situation.

Please don´t forget most of us are patients not doctors (although some here have read a quite a bit about the disease, treatments, prognosis and so on)

There are two types systemic treatments for colorectal cancer: chemotherapy and immunotherapy

The former is the "standard of care" it can be effective on its own or sometimes it can enable a second surgery of the metastatic sites (in the case of your husband liver and lung),
The latter (immunotherapy) is not standard of care, it is a lot more expensive and not useful for all patients, so oncologists can be reluctant to prescribe it, but when it does work it often works work very, very well.

In order to find out whether your husband is likely to benefit from immunotherapy the oncologist should order some tests : MSI-high (also called dMMR) and the mutation burden.

https://colorectalcancer.org/treatment/ ... nstability

Patients as young as your husband (specially if gastronitestinal or ginecological cancers appear to run in his family) have a good chance of being MSI-high and thus elligible for inmunotherapy.

Good luck

Javi

[utahgal7]

Hopefullhetti,

Welcome to the forum. IMO, I don't think an oncologist can accurately predict life expectancy because everyone's cancer progression is different. Zephyr is right that Stage IV disease is no longer a death sentence. People with Stage IV cancer are living longer and new treatments are being discovered daily. I also agree with finding a more optimistic oncologist. It could make a difference.

Personal story, my first oncologist told me that I would live 2 years max. I have been alive 4.75 years since diagnosis.

Don't lose hope and keep fighting.

Good luck to you and your husband,

Paige

[Nor Cal]

I hope the oncologist explained that they were quoting from overall (and somewhat dated) survival statistics averaged across all Stage IV cases, and not making a prediction as to your case. Finding it when the mets are small is helpful. His age is helpful. Just make sure you get the right tests (as others have mentioned) to determine available treatments. And attitude matters. Stay positive, vigilant, and hopeful as you can. Best wishes.