Help: What is a cancer symptom or not? Who to see?

Posted by amilucky @amilucky, Jun 4, 2019

I was diagnosed with a neuroendocrine tumour on my small bowel in 2014. This was found as I went into crisis. In June 2014 my surgeon operated and removed the tumour and 2cm of my bowel and reconnected. He also removed some of my liver and removed my gall bladder and in his words "microwaved things on my liver. I then developed a large incisional hernia and blockage. Eventually they operated again found the blockage and repaired and re positioned things around the hernia and repaired 85% of the hernia as it was so large.. Since then unfortunately more "things" appeared on my liver and I am now told I have metatasis of the liver. I am treated with monthly injections of somalutine and so far I am not suffering too badly. I do have some bad times sometime during the monthly period. My major concern is that my own doctor says I must liaise with my cancer consultant with problems but my cancer nurse says I must go to my doctor if I am not well. I feel like a tennis ball. This concern is very real when I am feeling not very well. I become anxious as to how this is going to progress, how ill am I going to be and who do I contact should I need help. My cancer nurse says everyone is different but how am I suppose to know when it is a problem my GP can handle or whether it is indeed something to do with my condition? I sometimes get very frightened wondering just who will look after me (medically) when the time comes and just how this going present itself.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

susu2 | @susu2 | Jun 4, 2019

I feel for you.You have conflicting advice from caregivers whom you trust, and Ofcourse they are speaking to you from their own scientific perspectives. You need a committed friend who an follow all of it with you and keep track. Is there someone who can give you that time? Otherwise, you must be your own best friend.. Whom do you trust the most? Who is responding to you best? Tell that person how you feel and see what they say. You need someone to depend on.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 4, 2019

Hello @amilucky and welcome to Mayo Connect,

As a neuroendocrine tumor (NET) survivor, after three surgeries, I can certainly understand your concerns and anxieties. It is part of the process and unfortunately, NETs is a rather rare type of cancer which makes it even more difficult to face because there are not all that many of us to discuss this with. My first NET was discovered in 2003, the second one in 2005 and the most recent surgery was in 2016. It was prior to my last surgery in 2016 that I found Mayo Connect. I do understand the ups and downs of this disorder. You mentioned the feeling of being bounced around like a tennis ball. This is a good analogy!

I would like to invite you to join a discussion about neuroendocrine tumors (NETs). Here is the link, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?tab=discussions

Please feel free to join in any of these discussions and read the posts of others. I'm sure you will find this discussion group to be helpful to you and we will all benefit from you sharing your experience with all of us! At Mayo Connect, we learn from each other. As one of our mentors always says, "We are better together."

Colleen Young, Connect Director | @colleenyoung | Jun 4, 2019

Hi @amilucky, I add my welcome. You'll notice that I modified the title of this discussion you started to "Help: What is a cancer symptom or not? Who to see?" I did this to help people know what the discussion is about and to bring members into the conversation who may have had similar experiences like @glenda007 @karendb @nenners and @cindylb to name a few. I also moved the discussion in the Cancer and Neuendocrine Tumors groups.

I think the issue about how to know whether to see your doctor or cancer specialist is something many cancer patients struggle with. How are we to know what is cancer related or not. Part of your answer may lie in urgency and accessibility. How urgent is the issue? And how soon can you be seen by whom? Sometimes this may involve going to ER if really worrisome/urgent or making an appointment with your GP or calling your symptom management nurse or waiting for a regular follow-up. When in doubt, I would probably call both my GP and cancer nurse.

AmILucky, I notice that you spell tumour with a "u". Might this mean that you are being cared for in Canada or the UK?

amilucky | @amilucky | Jun 5, 2019

Thank you for your very swift reply and advice it is really confidence boosting to know that someone is interested in listening and understanding just how confusing and frightening life can be and of course I understand I am not the only one. You mention that I spelt tumour as such. This shows me you have obviously studied my e-mail and this again shows me you are interested and dedicated to answering concerns. Thank you. However my understanding of the word "tumour" is the way the UK spell as I am not being treated in Canada. However I understand that I should probably approach either my GP and my cancer nurse but when I feel quite bad I get frightened as I saw my late husband die of pancreatic cancer and I nursed him at home. I suppose in someways we were lucky as we had the attention of a macmillan nurse who visited our home on a regular basis and was there when he died at home quite peacefully . My husband now also saw his wife died of lung cancer and she was in hospital at the time and again quite peacefully . However he lost his daughter to ovarian cancer on New Years Day 2019 and it was horrendous as she died in A & E and during her long illness had very little support from anyone. This was most certainly neglect. I wish to avoid any such thing and I suppose no-one can tell me how things will end but if I had some kind of insight into how I can help myself and my family by having a port of call if things get too bad. Many many thanks for your input I am most grateful. If I be of any support to anyone who wishes to talk about their experiences I would be most happy. I appear to be doing very well most of the time but do from time to time get very anxious and I have (although I may sound negative sometimes) learned how to deal with this and look on a future life rather than a shorter life.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 5, 2019

Hello @amilucky,

Yes knowing that others care and are concerned is important when you are faced with difficulties. I'm glad that you found Mayo Connect and have received some help and encouragement. I would also like you to invite you to take a look at another discussion group here on Connect where people discuss living with advanced cancer. You might find answers to your questions, here, https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

What is your major concern right now, @amilucky?