Changing Course

legaljen1969

I recently learned that a friend's mother apparently has small cell lung cancer. She (the mother) is in the middle of chemotherapy now, so I don't want to rock the boat too much. My friend has told me she is not all that sure about the oncologist and really wants her mother to get a second opinion or find a new oncologist.
This was an oncologist I thought was supposed to be pretty good until my supervisor's brother went to him and was told first he might have non-small cell lung cancer, then the biopsy said no cancer. A month later, the spot had grown to twice its previous size- Another biopsy- Same doctor says no cancer "You have tuberculosis but we can treat that." A month later- spot has increased in size again- PCM says "It's still growing you need second opinion." Brother gets one more biopsy same doctor. Still "No cancer but "the mass" has increased in size.
Confirms my choice I am glad I didn't go with that group. Now how to tell friend "Please get mom a second opinion."

legaljen1969

I know moving in the middle of chemotherapy is not the best course of action, but my friend is trying to get her mother in with a hospital nearby. This doctor is affiliated with that practice group. She keeps telling me he is not, but I KNOW he is because I was initially referred to him. I also know him socially as we graduated from the same college- many years apart but are active in local alumni club.
I don't necessarily think he is a bad doctor, but if friend tries to move her mother she needs to proceed with a completely different course of action because she will wind up with the same group of people if she wants to associate with this particular hospital.
I know how resistant people can be to get second opinions, because I was the same way.
Anyhow, please offer good thoughts that when and if her mother recovers or gets a good break from chemotherapy- that they can be introduced to and explore other options.

junie1

i my self had a good oncologist, he was good at knowing what she was treating. the only thing, she she had no people personality. she wouldn't actually look at any of us when talking. nor would she really answer my daughters questions. I started requesting a new oncologist , got the same run aaround. noone is availabe, I wanted to stay with my hospital (Moffitt) because of the other good things they do, but they kept saying i couldn't change. Finally several letters later,, from me, my family, & friends,, I did get referred to another oncologist,, and I love her.. I'm in what't called Senior Adult Oncology. & my doctor is so friendly, I so enjoy going to her, even her NP is great.
Good Luck to you and your friend,, Keep requesting a new doctor.

MarcieB

@legaljen1969, so, what was the outcome for your supervisor's brother? Did it turn out that he had non small-cell lung caner after all? Not tuberculous?

I can't imagine changing doctors in the middle of chemotherapy treatment, I'm wondering if another doctor would even accept a patient under those circumstances? Maybe after she has completed the chemo would be the best time to move if that is what she wants to do?

junie1

changing doctors in the middle of treatments is ok,, might be a bit of a time lasp because of getting into the new doctors office,, and then transfering all the paperwork,, but most can be done thur the computer. I was not happy with mine doctor,, and was very pleased i got the transfer,, i'm still at the same facility also.
if a person is not happy ,, why wait till treatments are over.. get a new doctor and be satisfied.,, treatments are easier to handle when everybody is content. .

MarcieB

Is it the mother, herself who is unhappy with the treatment? Or just her daughter? I'm sorry I am asking so many things, I'm beginning to wonder if my own version of chemo-brain is preventing me me from fully understanding this situation? :-0

legaljen1969

Marcie, it is not "chemo brain" or any other brain issue that prevents you from understanding what I was writing. It was my unclear writing and my jumping around. I am going to go person by person here. LOL

So, as for my supervisor's brother- there is still no clear answer on what is going on with him. They first said they thought non-small cell lung cancer. He was told the first biopsy revealed it was not cancer, and they would just keep an eye on things. He continued having shortness of breath (but he is also obese and smokes like a chimney). They did another x-ray which revealed the spot they saw previously was now larger. So they wanted to do another biopsy. My supervisor recommended he get a second opinion- go somewhere else to get the biopsy. Brother wanted to stay with the same team here locally so he did. After second biopsy, they said still not cancer-maybe TB. Brother goes to PCM who reads his chest images and tells brother he thinks there is something else going on and tells brother he needs for his pulmonologist to look at the chest images too. Pulmonologist says "This thing seems to be growing, but two biopsies say it's not cancer. This is "funky."" Yeah, really scientific diagnosis, right? Brother is now scheduled to get further opinion at MUSC (Medical University of South Carolina) from oncologists and pulmonologist up there- and they have a close friend who is a radiologist who is going to review the previous images and also any new ones they get. So we all wait to see what the diagnosis is for brother.

Now, let's skip over to friend's mother. I think Mother is content with her treatment and her doctors. She certainly is not planning to change course during the middle of chemotherapy. If any changes were made, they would plan to wait for a break in her treatment. Friend is very particular about many things, and very fastidious and will wear the internet out doing research.

Anyhow, back to the mom situation. Friend has heard and read some questionable things about the oncologist and his partner. His partner used to be pretty much the only guy in town (for that matter in the county) for oncology. He is extremely arrogant. If a doctor has ever had a "God Complex"0 this guy is the MAIN GUY- the perfect example. He is apparently a great doctor, but I have never met anyone who had a good experience with him. When he was the only game in town, he knew had everyone held captive with no options. He was on-call one evening when "mom" was not feeling well, so that is who my friend had to talk to that evening and I know that is playing into her opinion as well. The oncologist her mother is currently seeing has been in practice for at least a good 30+ years. He also has a personality akin to a brightly colored can of paint. I mean, it's better than a plain can of paint- but only slightly.

Anyhow, mom's oncologist and his partner are the same ones who cannot seem to peg the diagnosis for supervisor's brother. I am certainly not at liberty to tell her "brother's" issue using him specifically- but I have told friend that if she is not comfortable- go ahead and explore some options. However, I also told her that it is her mother's treatment and her mother's comfort level with her physicians that matters most. My family was pushing me a lot to get second opinions, but I had a good references who repeatedly confirmed my gut instincts to stay with my treatment team. I just said if they feel less than thrilled with the treatment or diagnostics, they should not feel bad about exploring options because I know that these two doctors are not for everyone (i.e. they are not everyone's cup of tea, nor are they "the only game in town" for her condition.) They are what is available close by locally, and I think when mom get her diagnosis she just wanted to move forward. Maybe she felt she had no options.

I am just concerned because of their wavering diagnosis of "Brother." Maybe they are just what "mom" needs.

LiveWithCancer

@legaljen1969 ... biopsies can be tricky. I know when I had my last one a few years ago, they looked at the slides as they took the tissue to make sure that they saw cancer cells. Apparently, you can take tissue from a mass without getting malignant cells in the sample. I had friends who went to the same university hospital as me ... which I love ... but who got a doctor that I am very unimpressed with. They both died within weeks of diagnosis ... one of them probably would have no matter what but the other ... I really think if he had had a better doctor, he might still be here with us. She kept delaying and delaying treatment for unknown reasons. It was ridiculous. I begged him to demand a different doctor, but he didn't want to rock the boat.

I wouldn't personally worry about changing doctors midstream if I was unhappy with the treatment I was getting. I sort of DID change midstream, actually. The treatment I was getting wasn't working so I wanted to change to the university hospital and get into a clinical trial. That decision almost certainly is the reason I am still here today.

Hoping for the best for both of your friends.

MarcieB

Wow, these are both interesting stories, and then I remember we are talking about REAL people, and I feel so sad for them. Brother must be very frightened? And mom and daughter are not having an easy time either. Whatever anyone decides, I think it is most important that the patient feels confidence in his/her doctor. I have always been so happy with my team, I have been fortunate.

legaljen1969

Marcie, as you said- the stories are interesting but I know the REAL people must be dealing with a lot. Anyhow, all I can do is offer support for whatever they decide to do.