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Second opinion ,I am so scared

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

After having 3colonoscopys and scope and cat scan,I seen another dr. Today.We talked about mass that was found in colon wall.This dr says it needs to come out.I am scared out of my mind.Said he would take piece of colon out with it.hopefully their is no Cancer under mass.other dr. Did not get deep enough for a good biopsy.Other dr. Said to come back in two yrs.This dr. And my oncologist don't want it left in.Please any advice would be appriatted.He also said the mass probly isn't causing the pain.Said I would be on light duty for 5 to 6 weeks.I don't know how not to be busy all the time.said I could have a bag on me for few days?I am so very scared.

Trubrit's picture
Trubrit
Posts: 1690
Joined: Jan 2013

OK! It's actually natural to be scared. BUT! I think I would just get rid of that tumour if it was me. Saying that, we're all different, and deal with things differently. So I'm not telling you to get rid of it, just its what I would do.  

Its a horrible diagnosis, and I pray that you can come to a decision that will make you comfortable. 

The 'come back in two years' is kinda scary. I think I would be more scared to leave a tumour in for that long.

Blessings!

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

If I know any thing at all .I know not to wait two yrs.

John23
Posts: 1832
Joined: Jan 2007

 

Have you given thought to getting a third opinion? You should!

 

The  comment: “said I could have a bag on me for few days?”  is a real puzzle. The placement of a stoma takes quite a bit; it’s not something you get for “a few days”. It takes awhile for the surgical wounds to heal, both for the placement of it, and the “take down”. It’s a resection of the intestine, and the intestine takes time to heal.

 

Personally, if I were told that I might only have an Ostomy “for a few days”, I’d be out looking for another physician.

 

You’re entitled to as many “opinions” as you feel you need (within reason), and knowing what’s right and what’s wrong about what a physician is telling you can mean a world of difference regarding the outcome.

 

Do yourself a favor and don’t rush; don’t panic. You’ve come this far, and getting another opinion isn’t going to damage your chances  for survival.

 

My hopes for your better health,

 

John

 

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

I am going to talk to my Cancer dr, again.Dr. Said it is possible one out of a hundred people could have bag on few days.Most be something that don't happen a lot .I don't have surgery for another month.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

Just curious, do you go alone to your appointments or does someone go with you? Also, do you happen to record the meetings? You sound uncertain as to what you've been told. I've always gone with someone to have an extra set of ears plus I've recorded them so I could refer to them later...it helps a lot!

Personally I would have it removed ASAP. I don't see how keeping it in you could have any benefit at all. I realize my comment is the day after your Dr. visit. I hope it went well. Keep us posted if you can.

-phil

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

My husband went with me this time.being uncertain comes from being told different things from first dr.He keeps changing what he is telling me.I won't go back to him.He is the one said come back in two yrs.and yes I do need it out.But want to make sure I don't get a surgeon that gets knife happy.If you know what I meen.thanks again.

PhillieG's picture
PhillieG
Posts: 4683
Joined: May 2005

"He keeps changing what he is telling me" is something that certainly raises flags. No wonder your earlier comment sounded confusing. I didn't mean to sound like I was second guessing you, it sounds like you're making some good decisions. I'm glad your husband is there with you too.

Thank you for the update...
-phil

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

My husband went with me this time.being uncertain comes from being told different things from first dr.He keeps changing what he is telling me.I won't go back to him.He is the one said come back in two yrs.and yes I do need it out.But want to make sure I don't get a surgeon that gets knife happy.If you know what I meen.thanks again.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

overwhelming and confusing for you.  I, and others, would really like to help.  

I have responded to several posts you have written.  In my responses I have asked you some direct questions ... some of which Phil has also addressed here ... are you taking notes, are you recording the conversations, do you have someone who can go with you to appointments ...

You have not answered any of those questions and so I am confused myself as to what is the best way to help you. Certainly supporting your doctor's decision to have surgery seems wise as others have noted. We can support you through that all the way and others will help you adjust to the "bag". 

You have done a great job to be proactive in your care to get a second opinion and it seems as if you have trust and a relationship with your oncologist -- this is all good, but some of the things in this posts are confusing and I feel your intense frustration.

Damn ... I wish I could go with you to an appointment myself! I never leave an appointment without getting all the facts straight ... now, granted, I am not the one with cancer ... I am just the one taking notes and making sure everything is understood before we leave the appointment. You have a tremendous amount to absorb in those appointments and it is also a very emotional time, so being confused is understandable. 

I am not faulting you, but I if you could please answer a few of the questions asked to you by members of the board when they write ... you can help us, help you.

All the best to you in this time of crisis. -- Cynthia

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

I did take my husband with me.And I did take notes.I also had copy's of all the test results.he said one in a hundred would end of with the bag for a few days.That scares me a lot.I have a month yet to decide.I agree it needs to come out.I don't know if he is the right dr or not.I am not rushing the surgery until I understand everything.This is my life and I have a lot of things I need to stay healthy for.I appriatte your replys.Sorry I am confused with all of this.

janderson1964's picture
janderson1964
Posts: 1824
Joined: Oct 2011

I agree with Phil that you should have it removed regarless. That is what they did with me. They said it is best to have surgery and do the biopsy after surgery. Unfortunately it turned out to be cancer in my case.

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

I agree I need to get the mass out.Dr. Will be doing a colonoscopy test the morning of surgery.I am sorry about your dig noses .I hope you are doing well.I will post when I know more.Thanks again.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

You have every right to be both scared and confused ... different doctors, different opinions, and on top of all that you have been experiencing chronic pain.  I am very glad to know that your husband went with you to the appointment.  That is wonderful that you have his support. You sound like you are doing all the right things at those appointments. This will all sort itself out for you with a bit of time.  Right now, it just must feel awful.  It was kind of you to take the time to write to each of us. Hang in there. Best -- Cynthia

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

I so appriatte your reply.I am taking time to sort through all this.Yes the pain has gone on for some time now.Both Dr s don't think pain is from mass.So I may still have pain afterwords.They think it could also be IBS.When you said you wish you could go with me.I have a feeling you would get all the answers if you were lol.I will keep in touch.Thanks again.

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

I so appriatte your reply.I am taking time to sort through all this.Yes the pain has gone on for some time now.Both Dr s don't think pain is from mass.So I may still have pain afterwords.They think it could also be IBS.When you said you wish you could go with me.I have a feeling you would get all the answers if you were lol.I will keep in touch.Thanks again.

thxmiker's picture
thxmiker
Posts: 1271
Joined: Oct 2010

We would all think you are crazy if you were not a little scared.  All of us were!  This is normal.  Then you have to turn that in to what can I do to make things better?  Get a second oppinion.  Add exercise to my day.  Add eating a good diet.  Make myself happy.  Keep positive people around me. etc....

 

Get as much information about you diagnosis.  Then learn about what is normal procedure for taking care of this.  Learn what are the Alternatives. (John 23,  Petelostatsea, me,  there are many others that have good information.)  There will be several idf not many that have been through what you are about to go through.  If you know what your diagnosis is then others can tell you their experience and what you can expect.  

 

This is a sharing and caring comunity. Take advantage of the information and positive stories!

 

Best Always,  mike

ppurdin's picture
ppurdin
Posts: 939
Joined: Jul 2009

Yes I am very grateful to this board.Everyone is so very carring.When I had Breast Cancer I don't know what I would have done without them.Their for I knew I could reach out again on here.The alternative would be leave mass in and worry every day that it could be Cancer.It may be now because the Dr. Did not get deep enough for biopsy.Their is a lot of uncertainly which is very scary.It really isn't a choice it has to come out.

KathiM's picture
KathiM
Posts: 7948
Joined: Aug 2005

And, not every surgery ends in an external appliance, darling.  In fact, most times now, there is some beautiful work by surgeons who specialize in GI surgery....remember my story....nothing external...my 'bag' is made from my descending colon...Some surgeries require a 'bowel rest' after being put back together, and so a 'temporary colostomy (bag) that is then reversed.

I couldn't 'wait' 2 years....it's just not in me, that sort of gamble.  So, I can understand how you are thinking now...and shame on that surgeon for changing his mind and not explaining what he meant by 'a few days'.  

Remember, you ARE a strong warrior!!!  Ask all of your questions, and search the Internet...I did...I searched on 'low bowel resections' (for me, it was the case...yours may be in a different area)...found my guy...then called all of the GI surgeons in my area and said "If the tumor is too low, who do YOU refer to?"  After 3 times getting the same name (and it was the same that I had found)....I scheduled an appointment...

BTW, my surgical team (even my hospital) was not in my insurance "group"....I filed for an exception...fought for it...so don't let that stop you from finding the best that there is....

As far as your pain....I know that my pain was caused from the skelatal reaction to my tumor...and as I walked differently from the growing mass, I messed up my lumbar region...

You never know what is related to what, IMHO....take care of the mass first, then see if the pain lessens...

 

Hugs, Kathi

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