My doctors know nothing

Posted by Turkey, Volunteer Mentor @tomrennie, Jun 13, 2023

There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I read and study, no matter how many big words I can regurgitate, I am still not a doctor. I can find anything on the Internet to contradict everything my doctors have told me. I choose not to do that. I choose to work with them. We have cancer. Testing for it, treating it, and living with it is going to hurt. There is no avoiding it. But working with and trusting my doctors has significantly reduced my pancreatic NET tumors. My innumerable lesions on my liver have stabilized. 9 months of CAPTEM have made a huge difference. The first few months were hard. The CAPTEM made me so sick. But working with my doctors, we found some support meds that make the treatment tolerable. I am mid cycle, and I am going for a morning walk with my dog. Getting out of bed wasn't possible 9 months ago. I love my doctors.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

trevor1522 | @trevor1522 | Aug 21 1:05pm

In reply to @tomrennie "Good luck tomorrow. Please let me know how it goes. Ok?" + (show)

Yep. Mention you have cancer is guaranteed to sort the chums from the fiends. I use it now to get rid of the people I don’t like. Bit like having a bell around the neck.

razorsharp | @razorsharp | Aug 21 5:52pm

In reply to @tomrennie "And the process continues for you. Good luck with everything Razor. Or do you prefer to..." + (show)

I don't really care what I'm called, but Mr is for someone is only who has his head stuck up his Butt . so you can call me Michael if you like LOL Take Care & Cheers from Downunder

razorsharp | @razorsharp | Aug 21 6:23pm

In reply to @zacharycat "Well I feel lightheaded or dizzy fairly often, food tastes different and my blood pressure is..." + (show)

I use to feel like that after leaving the Pub when I was young LOL

mhud2 | @mhud2 | Sep 28 11:08am

I also love my oncologist and his team! I had a pancreatectomy and splenectomy in February of 2021 to remove a neuroendocrine tumor. I've had regular CT scans every year since and had an interesting report after my scan last year in August. There was in the report which stated the "The spleen is off a normal size and there are no splenic lesions." Because I had no spleen I was very concerned about the other results in the report. When I had my follow up with my NP she was absolutely flabbergasted when she read that and had my surgeon review the scan and assure me I remained cancer clear. They followed through with the service providing the reporting and I received an apology three months after. My latest scan last month was clear as well and I really appreciate my surgeon and his team!

Turkey, Volunteer Mentor | @tomrennie | Sep 29 3:03pm

In reply to @mhud2 "I also love my oncologist and his team! I had a pancreatectomy and splenectomy in February..." + (show)

@mhud2 wow. That is amazing. Talk about a misread.

ricki8 | @ricki8 | Oct 5 10:45am

In reply to @tomrennie "@mhud2 wow. That is amazing. Talk about a misread." + (show)

@tomrennie
Not only 'misreads', but 'wrong comments' are not uncommon amongst the professionals. I recently arrived at the hospital flatlining from a massive heart attack of which I had no pain anywhere near my heart. The Cardiologist who put a stent in my heart said I arrived with enormous pain in my heart starting from the night before. ??? I asked that they change his written comment and they refused.
I actually had symptoms that were familiar with the symptoms from my cancer treatments, so there was confusion prior to going to the hospital. As a female, we are different than males (in so many ways) 🙁
On another note, I recently started Everolimus, 05mg daily, and combined with Lanreotide, they seem to support each other.

kbtexan | @kbtexan | Oct 5 6:08pm

I also have Nets on my Pancreas and only receiving Octreotide injections every two weeks for treatment. May I ask you what meds you take for yours? I just returned from the Mayo Clinic in Jacksonville, Florida and they want to do an endoscopy with ultrasound and inject Ethanol into the tumor area to kill the tumor cells. This can also give me Pancreatitis, which scares me. My doctors here know absolutely nothing about this disease, which is also quite frightening for me. I appreciate anything you can share. Up until three and a half months ago, I was able to go to the gym three days a week. Now I barely have the strength to walk through the house!

millds | @millds | Oct 6 12:13pm

In reply to @kbtexan "I also have Nets on my Pancreas and only receiving Octreotide injections every two weeks for..." + (show)

@kbtexan Im sorry you feel frustrated. I was told when I left Mayo Rochester 8 years ago, after surgery, I would have PTSD. No truer words…
NETS was misunderstood for many years. There remains a lot to discover.
Mayo Jacksonville has a great staff and excellent resources in the international NETS experts at Mayo Rochester, Dr. Halfdanarson snd Dr Hobday. Hang in there and continue to ask questions. Search NERF online for resources. Good luck.

kbtexan | @kbtexan | 6 days ago

Thank you for your response. I don't know what NERF is or where to find it.

Turkey, Volunteer Mentor | @tomrennie | 5 days ago

In reply to @kbtexan "I also have Nets on my Pancreas and only receiving Octreotide injections every two weeks for..." + (show)

@kbtexan Hi. I didn't know if your question was for me, so sorry for the delay in responding if it was. I was on capecitabine and temozolomide, captem, for 13 cycles which took about a year. I now have been taking just capecitabine for a little over two years which has kept everything pretty stable. Where is here? When was the tumor discover? Did it spread anywhere?