Need advice, experience, something!

[Aljames]

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! 

[VirginiaTim]

In a short answer, yes. This is all normal. I experienced the same thing taking care of my father. There never seems to be a plan per say but more of a treat it, see how it responds, treat more, etc.. I know it is frustrating and by all means, if you don't think he is getting the care or attentiveness that he deserves and that this disease requires, seek a second opinion. Typically, patients do not undergo surgery with 3B, at least in my experience and research. Stage 3 is one of the most controversial stages of lung cancer with respect to treatment options. Has he had the fluid from pleural effusion removed and biopsied yet? That would be the first thing that needs to be done. One of the most standard treatment regimens for Stage 3 is Chemo/Radiation at the same time, so that is a little confusing why the radiologist would say no.  I know how frustrating it can be dealing with doctors and weaving through treatment options. There were times where I wanted to just snap on every doctor around me until I got the  right answers. I wish you the best of luck and please keep us updated! 

[Aljames]

Thank you for your reply! No one has said anything about biopsy of the pleural fluid. That's one of the issues my youngest daughter is so angry about. Who would order that and why would they biopsy it? I feel so uneducated.

[Susan Cornett]

This has not been my experience.  I was diagnosed during surgery to remove a mass.  Within 24 hours, I met the oncologist and he had a plan for me (chemo) by the time I showed up at his office after surgery recovery.  Super Doc saw me each time I had an infusion.  With my recurrence, I had both chemo and radiation.  Again, Super Doc saw me each week and radiation onc saw me once a week.

Bottom line: you and your family have to decide what is best for you.  Your doctor shouldn't be defensive when you ask questions or want to know what's next.  If you have other options, you may want to look into them.  Hang in there.

[Tom Galli]

Aljames,

Welcome here.

Tim's characterization of our disease is spot on.  Lung cancer is complicated.

I'm assuming your husband had surgery and his right lower lobe and 10 lymph nodes were removed.  I'm also assuming the surgeon found more cancer that expected during the surgery and did not remove everything found.  Could you clarify these points?  I'll continue assuming he's had surgery.

There is nothing normal about lung cancer, but post surgical chemotherapy is pretty common for stage 3 disease.  If however, the surgery revealed more cancer than anticipated, then the medical oncologist may believe first line treatment is called for.  First line treatment normally consists of daily radiation for about 30 days and weekly chemotherapy.  But, your husband's radiation oncologist might believe withholding radiation is necessary to avoid complicating post surgical healing.  Radiation can be given after chemo so that is not a problem.  My survival experience points to problems radiation can cause to tissue and suture healing.

I don't understand your comment about Neulasta.  It is an injected drug that has a well recognized long bone pain side effect.  Did your husband's medical practice require you to give the injection or did they not tell you about the pain side effect caused by the drug?

During my chemotherapy, I normally saw my medical oncologist before or immediately after my third infusion. I also saw him after each scan.  In fact, explaining the results of these in-treatment scans is a very important consultation.  If his third infusion was on 2/8 and you saw the oncologist after that infusion, then the timing appears to be OK.  I'm not sure that the oncologist is effectively communicating from your post, but the schedule of consultations seems to line up with mine.  I found my chemo nurses to be a very effective resource during my chemotherapy.  My wife was calling them all the time about side-effects and strange symptoms.  They gave good explanations and even consulted with the oncologist to have drugs ordered to combat a problem.  Use the oncology nurses as a resource.

Unfortunately, bibasilar infiltrates (lung congestion, pneumonia and the like) and plural effusions are relatively common during lung cancer treatment.  Using an x-ray is a common way to check on the extent of the plural effusion.  Did the doctors remove the effusion fluid?  I'd call the oncology nurses and let them know about the emergency room visit and tell them if the effusion fluid was removed.  If so, they may have the fluid biopsied.  You do need to keep an eye out for his plural effusion condition.  If he runs a fever and has difficulty breathing or if breathing becomes painful, get him to the ER quickly.  And, call the oncology nurses and let them know what is going on.

Doctors are important but if they don't adequately answer your questions or get in your face, I'd be finding another doctor.  You pay for their services and if you are not satisfied, take your business elsewhere.  Did your family practice doctor refer you to the medical oncologist?  If so, I'd tell him or her about the oncologist poor patient communication skills.  If not, I'd ask your family practice physician for another medical oncologist.

You've got us now to help so if you have questions, fire away.

Stay the course.

Tom

 

[BridgetO]

 Seems to me you should be seeing your oncologist more regularly during treatment. Just my opinion. I agree with Virginia that a second opinion is a good idea if you're not  sure your husband is getting the care he needs. This doesn't mean he has to fire his oncologist. He could stay with the oncologist until you get the second opinion and then decide what to do. During my treatment for another (non-lung) cancer, I sought a second opionion and then went back to my original oncologist and told her what the second opionion doctor recommended and told her that's what I wanted to do.She acknowledged the expertise of the second doctor and that the recommendation was reasonable.  IShe agreed to it even though it wasn't what she recommended. I appreciated her flexibility. You shouldn't have to be concerned that oncologist number 1 will be upset by your husband going for a second opinion. It's a perfectly normal and usual thing to do. If he IS upset, then I wouldn't be comfortable with him and would change doctor's if possible. Hang in there and let us know what happens.

Bridget O

[Aljames]

Thank you for replying. Yes he had surgery, they removed the tumor and 10 lymph nodes, hoping that all the nodes would be clean and they could say he was good to go but one node wasn't clean. So in that regard they found more than anticipated but it wasn't as though they got in there and were surprised.

No one pulled any fluid from the pleura, not when we were in the ER or since. 

The problem we had with the neulasta was that they attached the little box to his arm and explained that the needle had pricked him and withdrawn, leaving the catheter for the infusion. Then they told us it would beep in 24 hrs to let us know the infusion had started and when it stopped we could take it off. So in 24,when nothing happened, I was panic stricken. I tore through my file of paperwork and poured over the teeny tiny fine print directions, warnings, contraindications all in 17 languages to find that it starts the infusion in 27 hours. The nurses had not read all of the directions!

[Tom Galli]

Aljames,

Ok, you’ve got the self-infused version of Neulasta.  I had to go back to the clinic 24 hours after each infusion for a blood draw that would show - low red and white counts.  Then, I’d get Neulasta and Procrit shots.  Sorry about the 27 hour mixup, and the multilingual instructions are a pain!  Surprised nurses would miss that detail. 

If the practice is using auto-infused techniques to address common side-effects, it is a pretty squared away practice.  Maybe you need to have a face-to-face sit down with the head of the practice or clinic and convey your dissatisfaction.  Are you getting your treatment through Johns Hopkins?

Finding metastasis in one or several lymph nodes could easily be a complicating factor, especially for the radio oncologist. Perhaps he’s withholding conventional radiation to use modern precision techniques to fry a future metastatic node.  He ought to have an explanation.  But, I bet it is a reluctance to radiate because of the healing complication so close to surgery.

I was stage IIIB and had surgery after I had pre-surgical radiation and chemotherapy.  The surgery was successful but the healing difficulties caused two more thoracic surgeries and 4 surgical stent procedures.

Glad you found us.  We are here to help.  Don’t be shy about asking questions.

Stay the course.

Tom

 

[Bigdnsm]

Aljames - I read your post and my heart sunk.

I have gone through a very similar experience over the past 15 months with my mother's oncologist. He's supposedly a world-class lung cancer specialist, but from day one I had my doubts and the alarms were going off in my head - but I didn't listen. I wish I had.

Like your husband's oncologist, he says he told us information when I know for a fact he didn't. He doesn't review my mom's scans - just listens to what his nurses tell him about them (and they are frequently wrong!). He will never tell us what the overall plan is for my mom, even though we ask directly every time - so we seem to careen from guard rail to guard rail, making it up as we go along.  And he gets VERY defensive when I ask him any questions. Oh, and he missed that my mom had pleural effusion - thankfully it was caught by his fellow (physician in training). The whole experience has been so confusing and disorienting - made worse by this doctor.

I have one huge regret over this entire experience and it's that I didn't listen to my gut and find another doctor the minute I figured out that this doctor was a terrible communicator and was lacksidasical with my mom's care. I would take your daughters' advice on this one - trust them and their medical knowledge and medical instincts - run, don't walk . . . get another oncologist, or at least go get a second opinion. There are some AMAZING doctors out there. You don't have to settle.

Best of luck to your husband and you and your family. This journey is a tough one, but it can be so much better with the right doctor leading the charge (and so much worse with the wrong doctor leading the charge).

Take care,

Susan