Follow-up visit today

JDuke

Hi everyone.

Well today was the post VAT procedure visits. The visit with the thorasic surgeon went well. Incision healing, post chest scan looked so much like the before, he had to double check that he had the correct one. No fluid in the lung, breath sounds are great, I am completely asymptomatic, he was pleased. Yes, it is sqamous cell anal cancer in your pleura; the thickening we saw on the PET and 2 other tiny spots. He said "you will get some chemo for this and I suspect you will be around for a long time".

Now onto the MED/onc. She walked in with a gloom and doom attitude. All apologetic for what the VATS showed, sorry about how things are going, yada,yada,yada! Her exact words were...well I think we need to get started on some chemo and buy you some time". She said at this point, we cannot cure you, just treat you. I came unglued! I don't know what I was expecting, but it sure wasn't her acting as if she was writing me off! I inquired about what chemo she would suggest and she had three of four ideas, but could offer me nothing in respect to effectiveness of any of them. Would just be trial and error. Do some for a couple of months, do a scan, check effects, continue or try something else, based on results. I had inquired previously about her contacting Dr. Cathy Eng at MDAnderson in Houston. They see a LOT of anal cancer there. She had not done that as of today. She said she could certainly try, but when I said I would just gather my records and fly out there for a second opinion, she said...that might not be a bad idea. I do not consider myself highstrung, but I am opinionated and have no problem speaking up. I want someone in my corner that is willing to step outside the box, be innovative and aggresive. Especially when we are talking about my life here! My husband remarked the first time that we met with her that she seemed, young, meek and timid to him. I blew it off. I was so glad to get away from the original onc's. condensending attitude that I wanted to feel good about this one. Am I expecting too much? My head is just spinning; this is probably not making any sense, but I feel like I am going to explode! Perhaps I am out of touch with reality, DENIAL, there's a good word. Whew, ok...got that all out. BREATHE.

I told her "I'll get back with you on this and she said fine. I made an appointment with her for a month from now, with the agreement that she would work me in if I decided to see her sooner.

Thanks for letting me vent. Hoping tomorrow will be sunnier!!!

Regards,
Joanne

cbs6931

YIKES - how aggravating!!!
Makes me mad hearing this. It seems like that is part of the problem with cancer treatment to me - no continuity between doctors. Think you've definately got the right idea about going to MD Anderson (or elsewhere for a second opinion)- I'd have reacted exactly as you did and be seeking another opinion and a new oncologist. So sorry this happened to you.

Thoughts and prayers coming your way!

Cathy

Sundanceh

((((Hugs))))
Yin and Yang, huh?

I think you will know what to do, JoAnne:)

Disappointing she did not make more of an effort for you. Your case certainly sounds much better than she portrayed to you.

I've also heard the terms "treatable vs curable." From your perspective, I don't think you are going anywhere, anytime soon either - except for another opinion:)

Forget Denial - go straight to Anger - always works for me and gets your mind right to keep up the fight.

Hope tomorrow is sunnier for you, we're expecting storms, LOL:)

I just had to come over and give you a hug (((JoAnne)))

-Craig

lizdeli

Sundanceh said:

((((Hugs))))
Yin and Yang, huh?

I think you will know what to do, JoAnne:)

Disappointing she did not make more of an effort for you. Your case certainly sounds much better than she portrayed to you.

I've also heard the terms "treatable vs curable." From your perspective, I don't think you are going anywhere, anytime soon either - except for another opinion:)

Forget Denial - go straight to Anger - always works for me and gets your mind right to keep up the fight.

Hope tomorrow is sunnier for you, we're expecting storms, LOL:)

I just had to come over and give you a hug (((JoAnne)))

-Craig

Next Steps
Joanne
Do you want me to call Dr. Eng's office or email them to find out what you need to do to get your info over there? Please let me know. The lung doctor sounded optimistic the onc sounded too meek. This is your life and she needs to be fighting as hard as you are.

PM me if you want to talk and I'll give you my number.

Hugs and prayers,
Liz

mp327

HI Joanne!
I'm sorry you are getting some mixed messages from your doctors. It seems to me they should be talking to each other and be on the same page. I prefer to stay positive and optimistic and would go with the opinion of your thoracic surgeon. In the meantime, a visit to MDA would possibly connect you with an onocologist who is more willing to go to bat for you. Your oncologist sounds like she is not investigating further options for you and I would definitely look elsewhere for second and third opinions. You may also be able to do a clinical trial. As for venting, I think you are entitled! This is the place. We hear you, we understand, and we are all in your corner! Keeping you in my thoughts and prayers.

Martha

lemonade

M. D. Anderson
Hi Joanne -

I live in Houston if there is anything I can do to help you. I did not go to M.D. Anderson myself, but I was treated in the medical center here in Houston. If you need help finding a hotel, pick up at the airport, etc., just let me know.

I was living in Albuquerque when I was diagnosed. I immediately came to Houston because I used to live here. Before I rented my house and moved, I was even able to find a hotel available on a monthly basis that would take me and my dog - and I have a St. Bernard!!! I moved and got here on a Saturday and they started my chemo/rad on the following Monday.

Please feel free to contact me if I can help in any way - barbarajham@yahoo.com

Barbara

z

mp327 said:

HI Joanne!
I'm sorry you are getting some mixed messages from your doctors. It seems to me they should be talking to each other and be on the same page. I prefer to stay positive and optimistic and would go with the opinion of your thoracic surgeon. In the meantime, a visit to MDA would possibly connect you with an onocologist who is more willing to go to bat for you. Your oncologist sounds like she is not investigating further options for you and I would definitely look elsewhere for second and third opinions. You may also be able to do a clinical trial. As for venting, I think you are entitled! This is the place. We hear you, we understand, and we are all in your corner! Keeping you in my thoughts and prayers.

Martha

Joanne
Hi Joanne,

I agree that MD Anderson is a good place for a second opinon. I hope you follow through with Lizs offer to try and help you out with that. Surely, Dr. Eng has experience with the anal cancer mets to the lungs, and she would have the information to back up what chemo to use. I hope only for the best for you and your tx plan. Lori

pjjenkins

f/u
Hi, Joanne,
Haven't been on for a few days and am sorry to hear of your docs differing perspectives. I sure hope that you have gotten set up for your second opinion.

I think you will be around a long time.... prayers and good wishes as you work through this next phase.
PJ