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Oncology Appointment

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Hello, everyone,


Well, I went to see the oncologist today and it was like stepping into a different world.


The waiting room was beautiful, the receptionist smiled and welcomed me right away and I was taken right back by a smiling nurse who was engaging and friendly who weighed me (two more pounds gone since Monday) and took my vitals.


Then straight to the exam room with original watercolor painted silk art where I did not have time to even get a good peek at all the walls before the Physician's Assistant came in with a smile and went over my history (not only did my doctors fax the last 6 months info, but I brought a copy for them of all my test results from further back showing any irregularities as well as my symptom journal) then left the room for two minutes. Then in walks Marcus Welby with the Physician's Assistant! (Okay, so not Marcus Welby, but that was the first thing that came to my mind.)


He, too, was nice and showed concern. He felt my lumps and said that he thinks they are an extension of breast tissue so he wanted to do a breast exam. Right then. Well, off went the shirt and then came the bra which I was about to pull over my head (I had not sewn that clasp closed yet, a new bra) when he says, "I can get that for you" and before I know it he undoes the clasp and pulls my bra away! My husband, the female PA and I are all in the room so there was nothing inappropriate in doing this but I was a tad uncomfortable that the girls were brought out to middle stage without a warm-up band when all of a sudden I remembered the earlier post about echo's and towels slipping and I had to try to keep from laughing.


The breast exam was done quickly and before I knew it the doctor himself was putting my bra back on and doing the clasp! He said, "Your notes say that you have nerve damage in your hands, and my hands work fine, so let me do it for you."


Well, he is setting up a mammogram just to be sure, but he thinks they are benign fibrous tissue. Then he asks, "Has anyone ever mentioned carcinoids to you?"


I told him that the gastroenterologist believes that I have carcinoid tumors and that is what causes my major stomach issues, and he says that he is almost positive that I do have them. When I have a major stomach flare it is carcinoid syndrome and related to Zollinger-Ellison. He then set up the testing to try to find them, but he warned me that they can be very hard and sometimes impossible to find and testing for them with urine and blood is not always accurate. We will just start the testing and take it one step at a time.


This has been the most bizarre appointment I have ever been to. Every single person I met was polite and showed concern. The doctor read that stack of paper I brought and looked over the test results and listened to me. My cynical mind (okay, my bad sarcastic wit) made me wonder if these were 'pod people' because I am just not used to an entire medical office filled with nice, friendly, attentive and concerned people!


All in all, a good day. I would not have gotten here (or to that appointment) if it were not for all of you holding me up and urging me to fight, and because of that I now have a real chance of getting treatment and maybe a little of my life back.


Warm hugs,



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Hi Penny,


Well, at last -- there is light at the end of the tunnel! It's too bad the light is shining on carcinoids. But isn't it terribly refreshing just to be treated with pleasantness and respect, by someone who has actually read your chart, no less?


Kudos to you for picking yourself up, dusting yourself off, and going back into the fray to try to get some decent answers!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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Well done! Jolly well done!! I'm sure I speak for all of us when I say you are just one utterly splendid woman and an inspiration for all of us, Penny. And if anyone deserves good treatment (in all respects), it's you.


I'd be willing to bet my book expenditure for the next 12 months that your new doctor is going to persevere until he finds the answers and a good treatment plan. And that's not a small, nor lightly undertaken bet, Missus. :)


Happy dance going on here, folks!


Love and many hugs,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Penny


I'm glad to hear that it went so well (carcinoids aside of course). It sounds like you have finally made it to the right place....I'm happy for you too!

Sending good wishes your way!

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Hello Penny


They weren't pod people, you took a wrong turning on the way and ended up in a place called Stepford! :lol:


I must admit I would find it weird for a male doctor to undo and then do up anything I was wearing <_< although I have no doubt your doctor was just being chivalrous.


I hope you get a good result this time, you deserve one, you do indeed persevere.


Take care.



Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I am so, so glad for you! You have found out what I learned after a year of going from doctor to doctor to doctor. There are doctors out there who really do care and actually take it seriously in trying to help a person figure out what is going wrong. I too deal with an oncologist and I think they are a different breed to begin with. They probably have to be with what they deal with on a day-to-day basis.


I am so glad that you may finally have someone get to the bottom of what's going and give you some direction on what to do.


Warm hugs,



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So pleased that you had such a good response to your Oncology Appointment. It is nice to hear that some do get thoughtful medical staff dealing with them.


Best Wishes



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Oh Penny, Penny, Penny...


(If only you could see the smile on my face, right now) :D !


I didn't have Marcus Welby, his sidekick, my hubby, nor the rest of the cast in the exam room, however, I am pretty sure I know how you must have felt when the doctor unfastened/fastened your..... :blink:


Anyway! I am so happy to read that you had a good dr appointment, with all of the pleasantries along the way, courtesy of all the medical folks you came into contact with.


I'm glad you were seen by the doctor you were and that he's taking the steps he is.


Thanks for keeping us in the loop, Girlfriend!

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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