NSCLC and Losing trust in my docs

Posted by judypt @judypt, 4 days ago

I'm 67 and was diagnosed with NSCLC a year ago. I was very fortunate that my PCP saw a problem with my overwhelming fatigue, sudden weight loss, yearly lung scan and bloodwork. Stage 1, no met. It took a few months to get the radiation treatment set up and of course the tumor had grown in that time. I had 4, three point SBRT treatments, 1200 cGy, to lower left lung. After my first radiation treatment I got pretty sick: dizzy, bad headaches, severe nausea. At the second radiation the oncologist told me that was unusual and she didn't see why I would feel bad. After completing the 4 treatments, I've never seen her again; I see a CNP. She did refer me to my medical oncologist for feeling bad. He referred me to my CNP/PCP who prescribed medicine for the nausea and mri for headaches. The pain in my left side at radiation site, 2" down from left arm pit and back side of ribs about 3" from spine started in mid-October. And it kept building. Med oncology wasn't concerned; referred me back to PCP. Day before thanksgiving I couldn't take it anymore more; PCP prescribed decent pain med. Since December I've had 2 follow up CTs, December one showing very little shrinkage. The one in March said "slightly less", no measurements on the scans or reports. April 18 MRI: they can find no reason for my pain. Nerve damage? No one is taking seriously the severe cramping I get in my diaphragm area. I am blessed because this was caught so early, but not listened to because it's just Stage 1.
I'm not an overly sensitive person; been down this road before. My daughter passed away in 2009 at age 23 from rectal cancer...the hardest road I ever walked in my life. Judy

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frouke | @frouke | 3 days ago

Hi Judy, I’m truly sorry for your loss, it’s very difficult for anyone to lose a child and I feel your pain. I also had stage one lung cancer in 2020 without spreading anywhere and they decided that a lobectomy was the best option for me, I didn’t receive any other treatments afterwards but almost two years later I had another surgery in a different lobe. They didn’t do a complete lobectomy, just a wedge was removed. I don’t understand why no one is taking your suffering seriously, I can’t imagine it has to do with being stage one, any cancer stage is a serious matter…of course I realize that higher stages require more work but this is understandable. I also thought in the beginning of this cancer journey I was on that it would be easier to deal with but not anymore…I learned that it’s not always the cancer that can determine the outcome, everything you go through has a huge impact on the rest of our body, especially when we get this disease in our older ages. I sincerely hope that you get the help you deserve for your pain, don’t let the doctors make light of what you feel, they may have medical knowledge but I doubt they have personal experience with this disease.

Colleen Young, Connect Director | @colleenyoung | 3 days ago

@judypt, I can understand your losing faith when your pain remains unresolved. It may or may not be related to your cancer or treatments, but you need to get to the bottom of what is going on and you want your medical team to help you.

You could ask for a consult with the palliative care team at your cancer center. Palliative care teams - physicians, nurses, and others - focus on symptom management and comfort in the cancer journey. They are specialized in pain management and other symptoms.

Might that be an option for you?

acguidon | @acguidon | 3 days ago

As a cancer patient myself with stage 4 lung cancer, we are in the driver's seat because we are the ones with cancer. Cancer doctors see many patients every day and eventually become desensitized. Therefore, cancer patients have to take control of their cancer and relationships with doctors. Early in my cancer journey, I established who was in control of cancer and any treatments.

pml | @pml | 3 days ago

Judy,
I'm so sorry for your loss. It is very hard to deal with when you lose a loved one and then, you have cancer also. My husband had stage 4 lung cancer. He died in July, 2024. However, he lived with the cancer for 14 years. What really bothered him the most were the treatments. They made everything worse and Keytruda almost killed him! In that case, the cancer doctor wasn't even concerned that he was down to 120 lbs. and could hardly eat. However, our primary care doctor got him to the right specialist and my husband recovered. We changed cancer doctors.

Colleen's suggestion about going to a palliative doctor might be a good idea for you. It appears that your current doctor isn't paying attention to your pain. Remember, it's your body and your money! Also you might do some research about your pain on the Mayo Clinic website. They are very good and reliable. I did a lot of research for my husband's cancer on the Mayo website and got a lot of suggestions that really were very helpful.

Ask God for help. He's always there for you. After all, he made you and he can fix you. I'll say a prayer for you too.
I wish you the best.
PML

marcibee | @marcibee | 14 hours ago

I agree with getting a palliative care consult. They are so helpful. Or maybe a referral to a pain clinic. I hope you get some answers.

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