Second opinion ,I am so scared
Comments
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Don't be scared
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!
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Ppurdin –
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
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Opinions
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
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I agree with Phil that you
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.
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Oh my ... I am feeling so badly for you and I can tell this is
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
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Thank you for your reply.Trubrit said:Don't be scared
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!
If I know any thing at all .I know not to wait two yrs.0 -
Third opinionJohn23 said:Ppurdin –
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
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.0 -
Thanks for the replyPhillieG said:Opinions
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
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.0 -
Thanks for the replyPhillieG said:Opinions
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
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.0 -
Thanks for your responsedevotion10 said:Oh my ... I am feeling so badly for you and I can tell this is
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
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.0 -
Knife Happyppurdin said:Thanks for the reply
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."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...
-phil0 -
Thanks Philjanderson1964 said:I agree with Phil that you
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.
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.0 -
This is a sharing and caring comunity
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
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We are here for you, don't forget that.
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
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Thank you.thxmiker said:This is a sharing and caring comunity
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
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.0 -
Thank you Cynthiadevotion10 said:We are here for you, don't forget that.
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
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.0 -
Thank you Cynthiadevotion10 said:We are here for you, don't forget that.
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
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.0 -
Breathe. It WILL work out!!!
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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