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to many test

cinda
Posts: 63
Joined: Jul 2019

I had radiation and chemo in oct 2018  finishing dec 31,surgery was to be when I was stronger. I had a surgeon this whole time.. every time I go its more test. finally he told be what he would do in surgery but wanted me to go to a gyn..to check if the tumor in colon had went into that area,with what radition and scar tissue does to you It was a very painful test. He tore me inside between the two areas,you can quess the problem that caused. That doctor had his own list of test.  I get that done and go back to surgeon and now he wants me to go to a doctor to check for kidneys and bladder problem , which I don't have any. Has any of you got the run around like this. I am about to give up. I feel like I'm not getting any help. I might as well accept whats wronge and go forward and live the best I can. 

 

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

He is not the only one out there, so I would go looking for someone who will actually perform the surgery instead of putting you through so many tests.  

Make sure you get all of your medical records, and test results. 

This just does not seem like the normal routine. I would definitely be looking elsewhere. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

I switched from the surgeon I saw originally to one who is a teacher at the medical school.  The difference was night and day.  It took a bit of effort, but I am glad I did it.

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

I'd suggest a second opinion.  There is nothing wrong with getting some more advice.  Sometimes doctors just want to cover all bases before proceeding, but going from doctor to doctor for what he feels "might be an issue" can be very time consuming.  Just a suggestion and hope you get to have your surgery sooner rather than later.

Kim

cinda
Posts: 63
Joined: Jul 2019

when I say I finished chemo in Dec that was 2018. He had told me in the past he didn't know what was going on inside me because the tumor is two in a half inches up and they try 2 colonosty but can't get past it.But now that he got in the gyn involed who is his friend he seems  to maybe want to go forward. I don't know if the next person is his friend also. I ask for anther pet scan since its been 10 months, to see what shows up . He's supose to call me on that though he said that will take awhile to get. and was disapointed I requested that. Might go to my oncologist if I don't hear from him this week. You are right to say go to someone else. I hate stating with a new persons examies . but I quess this is not the time to be shy. thank you all for your respone.

danker
Posts: 1247
Joined: Apr 2012

One way or another you are paying these doctors!  If they realy aren't serving you, it is time to fire them and get some new ones.  I hope you are dealing with a large enough hospital that they offer many choices on staff.  If not, I would change hospitals as well!  Good luck to you!!!

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Pre-surgery I had to see a cardiologist, a pulmonogist, get another colonoscopy, go see the person that would be doing the stents to block the urine (I forget what type of doctor they are called), the anathegeologist (spelling), my regular PCP and a plastic surgeon in case the regular surgeon couldn't sew up my bum correctly. Phew, it was a run around, but thankfully they all cleared me and it got done.

cinda
Posts: 63
Joined: Jul 2019

wow anne.! what am I camplaining about.  I think my main concern has been its 15 months since I was told I had cancer ,so whats happening in my body. I.ve had 2 colonscopes,2 ct scans. 2 pet scans.24 radition treatment. some chemo.port put in. seen a surgeon about 8 times. seen the gyn. with about 6 more test at this time until they think of more. How are you doing after all this , how long since your surgery. Are you glad you did it?

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

wow, that is a lot.. I only told about the doctors right before surgery, otherwise with the exception of the gyn, I had many many other visits along the way. I had my surgery in June of 2019 and yes, I'm glad I did it. I got my first CT scan in November, and got the all clear, officially in remission.

The surgery gave me a few problems because I ended up getting an infection in my bum flap, but once that was cleared up it healed pretty well.  The surgery it's self gave me another "side effect" I wasn't expecting, but considering what would have happened if I didn't get the surgery, I can live with it.

Do the running around, get the surgery. We want you with us.

cinda
Posts: 63
Joined: Jul 2019

Thank you for getting back to me. I'm afraid of the surgery making things worse. If I don't have long I'd rather deal with the problems I have now. I'm so glad you don't regrett what you done and am better, I called my oncoligest I go to him in 2 weeks , So if my surgeon doesn't order the pet scan maybe he will. that info will help my next step. You take care of yourself. and know That answering me ,makes a difference in my life. 

    Thank you and to all who showed they care!

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Anytime Cinda... I believe we have to stick together. If you ever just want to talk, or if you have any questions, you can DM me. I'm happy to help in any way I can or just listen if you need to cry or vent.

Anne

cinda
Posts: 63
Joined: Jul 2019

got petscan results . 5 masses on liver. seen the pictures on doctors computer, cancer so bad that my colon cancer surgery is now off the table.  They will put the bag on if I want since colon cancer is worst and theres a tear between the two areas and stool comes out wrong place. ladys will understand this. I can consider chemo but the doctor say he's sorry but it is what it is. The surgreon say if he puts the bag on he will leave all the cancer in my colon as is. So I quess we should never think that things couldn't be worse. I don't know what to think except (when did it all go wrong)  I thank you all for the kindness you showed me, helps so much at such a overwheming time in my life!

Trubrit's picture
Trubrit
Posts: 5175
Joined: Jan 2013

But you are strong, and I say never give up until the very, very last moment.  You never know when that miracle will come along. 

Meanwhile, I would be living life to its fullest. Every moment you're not in pain, is a moment to rejoice. 

I hope you don't plan on leaving the forum. We're here for everything, good, bad and ugly. 

My thoughts continue to be with you. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1089
Joined: Apr 2017

Ugh.  I am so sorry.

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

I'm so sorry to hear this news.  You have tried so hard to get them to listen to you and now are facing this.  I'm hoping that the colostomy surgery goes well if you decide to do it.

Kim

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

I'm so sorry to hear this Cinda, you've run the gauntlet just for this... The bag is not as bad as you think. I was scared spitless of the bag. I thought I'd rather deal with the not going for a week on end then deal with the bag and I was wrong. You get used to it, much like you would get used to false teeth. It's just another thing for me. 

I hope that if you decide to go ahead that it's just as easy for you.

You are in my thoughts and prayers. I wish you much love.

Bellesouth
Posts: 24
Joined: Feb 2017

Do you have a care giver? A friend or relative nearby who can go to appointments with you? Someone who can be your advocate because sometimes doctors don't really hear what a patient wants or has to say. I don't want to believe your case is hopeless. Maybe you can't be cured; a lot of us here can't. But I hate that your surgeon doesn't want to remove the tumor. Like several others, I hope you will get a second opinion. You should not have to start all over again with tests. When you schedule an appointment with a new surgeon, you can go ahead and ask the facilities where the tests were done to send a copy to your new doctor. That way they can have them to review before your appointment. If nothing else, the new surgeon can request copies, but it will save time if you do it beforehand. Goodness knows you've been through enough as it is. We are all here for you, Cinda. Hugs!

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