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Jill: So sorry to hear this news but doctors can and are wrong, many times. At least you are doing the right thing by getting a diagnosis immediately. I will send some prayers and good wishes your way. Please let us know what happens.
Yep, my doctor started off saying I either had AIDS or lymphoma and it wasn't anything but the antibiotics.
Crossing my fingers for you. Kudos to you for noticing and taking swift action.
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Crossing my fingers that the doctor is just trying to cover himself until he knows for certain. On a positive note, my cousin's husband has had lymphoma and has been in remission for a long time. She is a very private person and isn't a good communicator, especially about this sort of thing, so I don't know the details but it gives me hope. Best of luck and holding good thoughts here.
I got the results of my CT scan today. They were not good. They found several large abnormal masses. My oncologist has ordered an urgent PET scan. His idea is that with the more detailed information in the PET scan, he can pressure the ENT do my biopsy a lot sooner. As of now my pre-biopsy consultation is schedule for July 31st and the biopsy surgery isn’t even on the schedule yet.
Oh no, so sorry to hear that. Sending positive thoughts your way. Hopefully you can get a biopsy soon and get to the bottom of what's going on and begin treatment to get it behind you.
Hi Jill, sorry to hear that. I am trying to remember the sequence when DH had the lump. I'm pretty sure they did the biopsy first. A CT scan shows, IDK, lumps? A PET Scan will show if any of them are cancer. The biopsy will show what kind of cancer it is, so they know what kind of treatment to start.
I have been debating whether to answer your questions about DH's lymphoma. When he was sick, the last thing we needed was people telling their "cancer stories" which sometimes did not have good outcomes. "gee thanks for telling me that."
DH had DLBCL, diffuse large B-cell lymphoma, a non-Hodgkins type. He was told there was about a 65% chance of cure with the first chemo protocol. He started treatment at a NCI Cancer center (one of 40 in the US, top tier). However he really wanted to continue going south for the winter like we always did. There was no way we could have stayed in our northern house for the winter. So the doctor made arrangements for him to continue treatment down south. To make a long story short, things got screwed up, the medical care there was sub-par. The lymphoma came back. Due to co-morbidities and DH's age, the next step, a bone marrow transplant, was not possible. He passed away.
That being said, I wonder if he would still be here if he had stayed at the NCI center for his whole treatment. The doctors there were excellent. Cancer is not the time to be treated at your small neighborhood hospital - get to the best doctors you can. I am wondering why an ENT doctor is doing the biopsy? sounds odd. Why not a surgeon?
Finally, take a tip from a friend of mine who survived breast cancer many years ago. She told me, when people started telling her about people they knew who had had cancer, she held up her hand in a STOP motion and said "Stop! I can't take any cancer stories right now!" (she is a cool person!)
As of now I really don’t mind hearing others’ stories, even if there wasn’t a happy ending. I’m sorry to hear that there are lingering what-if’s for you.
I think one of the dilemmas that some people face is that being treated at a nationally recognized cancer center sometimes means being separated from family and friends (not really true in your case). I have already decided that I am going to either be entirely treated at a well-respected cancer center (I am thinking Moffitt in Tampa) or have them set up the treatment protocol and have it done locally.
However, it seems that you tried the latter down South and it didn’t work out? I mean, you already knew what kind of treatment he needed and they screwed up the administration of the treatment? Or did the screw-up involve something else?
I am a cancer newbie and am totally naive as to the multiple ways things can get screwed up (although my imagination is already helping me)!
You can always PM me if you don’t feel comfortable divulging all the details in semi-public.
He was getting a specific chemo regimen that involved 5 or 6 drugs given continuously over a 5 day period, times 6, each 5 day cycle to be 3 weeks apart. The first four times involved a 5 day hospital stay, which he hated. (the nurses weren't too happy either). He found another doctor who could do it with a portable continuous infusion pump, only coming in once a day to have the drugs changed. After that treatment, which was the 5th, he was so wiped out he could not face having the 6th and final 5-day dose. What I didn't find out until we got back up north and read the original oncologist's notes, was that, due to poor kidney function, he was supposed to get all drugs at a 75% rate, not full strength. The doctor on the 5th treatment gave him full strength. Apparently he did not read far enough into the medical record, just saw "XYZ chemo" and gave him the standard dose.
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