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Confused by CT scan result: How can I get it explained?
My husband has metastatic cancer, did 10 chemo treatment now. on 2/15/23 CT result showed Sum of Diameters decreased 30%. His Pancreatic body mass just slight decreased, his liver 10 lesion from 30x29mm now is 18 x 16mm. Does mean the liver 10 lesions decreased like 50%. The Chemo is really working? We just wish the doctor can explain to us more details. Thanks
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@scalettasandy
I just read your post and it really touched me. Do you have any pre-existing conditions? I am surprised that your infusion center and Oncologist would not consider changing the dosages of your chemo to allow you a reasonable lifestyle. I did Gemzar for 3 months and will go back on soon to complete a 6 month regimen. I have a24 hour period feeling horrible, like the Flu, then I am back at work. I do it on Friday so am back to work on Tuesday. I do it every other week. If it is taking you down that much, pls tell your oncologist to adjust the dosing or provide better pre-meds. You deserve much more attentive care. I wish I was near you to help.
IMO, anyone with pancreatic cancer should relocate to live near a pancreatic center of excellence - not just a cancer center of excellence.
IMO returning home for chemotherapy is not the best approach.
My visits to MSK require arranging a flight and hotel which is expensive. I will gladly do that on occasion but cannot do that for Chemo treatments. And I wouldn’t move there if I could. Family keeps me strong and being away is so isolating.
Im trying to arrange a virtual visit with their oncology team to see if I would be eligible for any clinical trials. In the mean time I am now going to a comprehensive cancer center for chemo. So far they have been open to suggestions from MSK.
Unfortunately with this cancer, everyone responds differently and each center does things differently. It’s hard to know if you are getting the “best” option. I have changed local oncologists twice because I felt they were not fighting hard enough or answering my questions about different treatments. I truly felt they were just going through the motions to bill my insurance. I needed someone somewhat knowledgeable about different options AND honest with me if they didn’t. My current oncologist seems to fit that description.
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4 ReactionsRobee, I agree with your comment: "Unfortunately with this cancer, everyone responds differently and each center does things differently." As I continue to research and learn, I am amazed at the variations in treatment options and approaches to pancan. It is really difficult to know whether you're getting the "right" treatment or the "best" treatment for your particular situation. It is always incumbent on every patient (or caregiver) to ask questions and make sure that treatment is appropriate, but it seems especially incumbent on those of us dealing with pancan. You can't approach this disease blindly. It requires a lot of work and advocacy.
Re relocating to a pancan center of excellence, I am torn. Would I move? No. Would I travel? Hm. Unsure. I have done medical travel before. Our son, whom we adopted overseas, required clubfoot treatment that local physicians were disinclined to tackle. So we traveled to NYC and, later, Philadelphia dozens of times over a period of years. This required airfare or a long drive, plus hotels and meals--very costly. But there was no question we needed to do it for him. I am not yet at a point where I need to travel for my pancan evals/treatment. I did switch oncologists some months ago, and my new one did his residency at Mayo in Rochester, and he has implemented things he learned there. Plus I feel confident in the nursing and surgical care I've had. So right now, I'll stick with my center, even though it isn't an official pancan center of excellence. (It's affiliated, through hospital system mergers, with one that's in a city elsewhere in our state. That center is actually much smaller--it has only two MDs--so I think its designation comes from research, and my center is clearly doing research on its own and in cooperation with the more-distant center.)
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1 ReactionI will comment one last time on this, not as medical professional, but as the brother of someone who had pancreatic cancer.
Foremost - you only get one chance at beating pancreatic cancer. It is not like other cancers. It is subtle, sometimes fast, many times already in one's other organs at the time of diagnosis ... and a specifically trained, pancreatic cancer focused team - including focused and specific oncology - is, imo, your best hope. I am sorry to be so frank, but that's it - you get one chance. Better attitude and a happy home life will not protect you from this disease.
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1 ReactionSo so true!
Demand your local follows center of excellence. Tell center of excellence they are primary.
Perhaps you can speak with someone in the team about working with a local oncologist they work with on a regular basis. Cooperation can be difficult, but John's Hopkins is one of the top places. I am sure they have a patient portal and you should be able to reach out to them. They also can help put you in touch with their social work/counseling department who can help you address some of what you are going through. I am also alone and it is difficult to be alone in this situation.