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Need advice, experience, something!


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This may be long, I'll try to condense. Husband had an x Ray and ct in ER Sept 21, 2017. ER Dr saw 1 tumor in right lung, tumor on adrenal gland, enlarged lymph node in para-tracheal area. Family goes bat shi_ crazy, 3 daughters, one is a  hospice nurse, one is a trauma medic. So we go to family dr. He orders pet scan. Then biopsy of lung tumor.  Pet scan shows only cancer in lung tumor. We go to oncologist. He sends us to big hosp in big city. Dr there orders bronchoscopy on lymph node and biopsy on adrenal tumor. Everything comes back clean. 

Family breathes again. Just remove lung tumor. They take right lower lobe, tumor, and 10 lymph nodes. This is Nov 27. We are thinking it's all good. Nope. One lymph node is cancerous and tumor was bigger than they thought. This is where things get weird. Our oncologist sees us to plan treatment. He mumbles under his breath, " should be stage 3, but then we wouldn't do surgery," He says  chemo once a week, radiation every day, and sends us to radiologist and goes off to have his knee replaced.  Radiologist says no, go back and have chemo. Maybe do radiation later. Huh? We go back, and my husband starts chemo. Avastin, Alimta, carboplatin. Once every 3weeks with blood work on intervening weeks. He had his third treatment 2/8 and last is scheduled for 3/1.

So there have been some communication issues with the oncologist and his office but the treatment seems fine and most important my husband is comfortable there. He is not a technological guy, no smart phone, no computer. He hasn't googled a single cancer site. And he hasn't seen oncologist since 12/22.  So that's my first question...is that normal? To go through chemo and only see nurses?  I called the office 2 weeks ago to voice my concern over the lack of a written treatment plan, the fact that they sent us home with neulasta and didn't explain it correctly and was satisfied with the responses.

On Sunday (today's Thursday) my husband started having major pain in right abdomen,side and back. He couldn't walk,sit,lay down. He finally let me take him to ER on Monday. He was diagnosed with mild patchy bibasilar infiltrates and right pleural effusion . they prescribed antibiotic and sent him home. He seems to be in less pain. He breathes well, no fever, pulse is fine. He can't laugh, cough or sneeze without pain.He is favoring his right arm and hand.  He went for his weekly bloodwork today so I called ahead and told them he'd been to er. 

When we got to oncologist office they did his blood work and then the Dr came in to the chemo lounge to speak with us. He kind of got in my face about complaining. He said we had gotten a treatment plan (we hadn't) and the radiologist had been on board with the chemo/radiation plan but had changed his mind and oncologist was surprised. Then he said we'd do radiation next. Whoa- we didn't know that. Another lack of communication. I asked about next week's chemo, should we go ahead with it considering the effusion. He hadnt even seen the x Ray or ct done on lungs 3 days ago. He said yes, we'll go ahead, but instead of doing pet scan 2 weeks after last chemo we have to wait 4 weeks. I asked if they'd do an x Ray before the chemo and he said no. He kept saying "this is unique, you shouldn't have surgery with 3b but you did"

My daughter is flipping out, she said the ER doctor specific said we needed to keep an eye on the fluid in the pleural area. She hates that the Dr got defensive with me and that he seems so lackadaisical.

Does all this seem normal to you all? I'm being pulled by the daughters to do more and the husband who doesn't want to"pis_ the Dr off". We really have no idea how my husband is doing but I sort of thought that was normal while going through the chemo. I wasn't too concerned about the Dr till this pneumonia happened. Now I'm not sure what to think. It does seem that checking by x Ray to see if the fluid has dissipated would be logical but I'm sure they wouldn't do that on a regular, non lung cancer,person. I just want some one to tell me that yes, this is how it works, or no, run away to another Dr fast!

To anyone who made it this far,thank you for reading so much! 

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Hi, My husband went through the problem with the plural effusion also. When they did the biopsy on my husband they found cancer cells in the fluid in the pleura. Our Dr. told us that once the cancer cells are in the fluid in the pleura- that it is considered stage 4. My daughter is a writer for a lung cancer site (a high ranking and one)  and asked the Dr. about stage 3b for which he responded that was old news and they don't call it that any longer. He told us 3b is now considered stage 4. I have heard others refer to 3b since then as well. My husbands Dr. is a big speaker and is paid by drug companies to give speeches. He travels the country going to all the events and keeps up on the latest studies and clinical trials. He was also an investor in the company with which my husband did the immunotherapy trial. It was a lot to take in. Everyone treated us as if we had a "Rock Star" for our Dr.

I would ask if testing was done on your husband for the gene mutations. My husband was tested for over 800 mutations. If your husband has any of the main three... EFGR or ALK and KRAS I believe... it seems there is targeted chemotherapy for those mutations which is much less harmful (I'm told) than just getting chemotherapy. Was he tested for mutations? Just another thing to check into. One man we met at a lung cancer meeting had lived 10 years on targeted therapy. This was quite a motivation for my husband whose optimism alone could save the day. It's never a bad idea to get a second opinion.

My friend's husband has a type leukemia for which he successfully received a bone marrow transplant. She went to bat for him   as well and received the same type response you did from your Dr. I'm sorry for her and for you as they  should be more understanding. Their position I guess must be a hard one and none of them is perfect. I don't see how they do what they do. It must be hard and they must have to wax cold at times to not be able to fix everything. Take care and my heart felt regards to your family who I know is going through so much during this time period. My best to your husband and I hope he gets to feeling better soon. You do have to be alert and watch any hospital staff like a hawk. Your a good advocate for him and you know the whole of his experiences. Sometimes they forget or don't see everything at once in the files. You know how he has responded to different things so far, so it's good your out there looking out for his best interest and to help him and your family cope. 

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