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I have stage 4 neuroendocrine cancer that was diagnosed in November 2019. I have been on capecitabine and temozolomide but for my last four rounds we have discontinued the temozolomide. I don't seem to have any symptoms of NETS and I don't react negatively to the chemo. My bone marrow may be reacting — likely why we discontinued the temozolomide. From everything I have read, I suspect I may have another two years on this earth but right now, I just feel like a fairly normal 73 year old who tap dances, gardens, goes for walks, cooks, sews, interacts with family and so on. Every now and then I have crying jags when I simply feel sorry for myself and in the dark about what might be to come. I don't seem to be able to google any information about the progression of this type of cancer so I don't know what symptoms I'll experience as time goes on. Can anyone help me in this?

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8700 Posts
CMM‍ welcome! I admit I dont know much about this type of cancer but I'd like to give you the cancer information line . They can help you with more accurate information. 1888 939 3333. I would suggest perhaps staying off google for a bit... much of the information is outdated and inaccurate....depends really what sites you are on. ... do you have a good support system? The crying jags are normal considering what you are going through. You are allowed to feel whatever it is you feel. You might find it helpful to chat with the oncology social worker. A very good support. Keep up your hobbies and activities!!!!!!good for you for being so active. I'll see if Lianne_Moderator‍ has more information on this cancer type.
Runner Girl
3137 Posts

Hello @CMM and welcome.

I'd like to introduce you to @ACH2015

Here is a little info about your cancer: https://www.cancer.ca/en/cancer-information/cancer-type/neuroendocrine/prognosis-and-survival/?region=on

A small excerpt from the link:

If you have a neuroendocrine tumour (NET), you may have questions about your prognosis. A prognosis is the doctor’s best estimate of how cancer will affect someone and how it will respond to treatment. Prognosis and survival depend on many factors. Only a doctor familiar with your medical history, the type, stage and characteristics of the cancer, the treatments chosen and the response to treatment can put all of this information together with survival statistics to arrive at a prognosis.

A prognostic factor is an aspect of the cancer or a characteristic of the person (such as age) that the doctor will consider when making a prognosis. A predictive factor influences how a cancer will respond to a certain treatment. Prognostic and predictive factors are often discussed together. They both play a part in deciding on a treatment plan and a prognosis.

Runner Girl

Hello and welcome @CMM .

I am so glad you reached out. I read all the activities you enjoy and I would say you are more active than younger and healthier folks I know 😄

@DP21 and @Sprite @ShariM @stephanieelizabeth are a few members who have joined in the last few months and have indicated they have the same cancer as you . I am not sure of what stage they are at. I am hoping they can jump in and share their experience with either the drug, the symptoms or the cancer itself.


2484 Posts


@Runner Girl tagged me here, and I was diagnosed with Stage IV cancer in 2016. My cancer is Unknown Primary Adenocarcinoma, and Unknown Primary is rare and has its challenges as well. The truth is the doctors can't predict our end date. We can't help but think about this. However - we all have to look at our individual situations and if you feel well and do all the activities you do - you are living your life to the fullest. This is something I have had to come to terms with and be as positive as possible. What you say about your feelings is common to so many of us. One thing the Social Worker at the hospital told both my wife and I was to empty your emotional bucket - often. It is normal and we need to express our feelings to ourselves most of all as well as other trusted people in our lives.

I see @Runner Girl has also given you some information to look at in her post. When you said you had no symptoms of NETS - did you mean METS (no new Metastatic cancers found ?), and if so, that is always a good thing to be told.

Look around, hopefully the tags @Lianne_Moderator gave you will be in touch or reach out yourself.

Keep well and keep dancing.


14 Posts
Hi there.
I have Paraganglioma.
Recently diagnosed through biochemical markers. I exclusively secrete norepinephrine so they know it's a sympathetic PGL. I am waiting for a gallium dotatate PET with CT.
I have a terrific multidisciplinary team in Toronto.
4 Posts

Thank you. This is encouraging!!

What I meant by not having any symptoms is that I don't have any of the symptoms of NETS that are usually listed, except night sweats, and I used to think that was just a recurrence of menopause symptoms. I don't think I can think of my cancer as carcinoma; I think it is just neuroendocrine.

4 Posts

Thank you, Lianne!

53 Posts
I have Neuroendocrine Carcinoma. I am in remission now and agree with the above comment. Stay off the internet. I did not google my cancer and let the professionals give me the facts. No need adding stress to what what we are already dealing with. I thankfully had an amazing team but If I had have any doubt I would of got a second opinion.
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