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Liver Biopsy and I've Missed You All
Hello Friends!
This will be posted on both the Medical Community as well as the Social Support, as medical discussion and support is being sought.
A long break has been taken from here, and for that I apologize. A lot has been on my mind, and well... I just needed to take some time to enjoy life before deciding on what to do... My stats are in my profile. (For those not remembering me.) My hepatologist typically treats a 2b WITHOUT a biopsy. (??!!) I said, "No". Originally I considered waiting to have my biopsy taken at the end of this summer (as some of you may remember). Because of my reluctance in starting treatment, and expressing my desire to wait a few years, he ordered a biopsy.
The liver biopsy wasn’t as big of a deal as I anticipated. It was ultrasound guided. A light sedation was given. (I don’t know what it was, I was totally awake but RELAXED!). Actually the shot given to numb the area hurt more than the procedure itself. Tiny slivers from three different areas of the liver were remove. (Why? I don't know.) That just felt like a dull pressure.
I asked that the results be faxed but instead the nurse practitioner emailed me with this:
NURSE PRACTITIONER: "Dr. **** advises your biopsy results will be discussed with you in detail during your March 28th appointment. Briefly, I can state this: Stage 0-1 minimal scarring (no significant fibrosis) w/Grade 1. Feel free to call me after 3:30 on Monday. And, in answer to your question, yes, he still would like to discuss treatment."
Does this make sense?
I hope all my friends here are doing as well as can be expected. Each of you have continued to be in my thoughts!
~Anwaar
This will be posted on both the Medical Community as well as the Social Support, as medical discussion and support is being sought.
A long break has been taken from here, and for that I apologize. A lot has been on my mind, and well... I just needed to take some time to enjoy life before deciding on what to do... My stats are in my profile. (For those not remembering me.) My hepatologist typically treats a 2b WITHOUT a biopsy. (??!!) I said, "No". Originally I considered waiting to have my biopsy taken at the end of this summer (as some of you may remember). Because of my reluctance in starting treatment, and expressing my desire to wait a few years, he ordered a biopsy.
The liver biopsy wasn’t as big of a deal as I anticipated. It was ultrasound guided. A light sedation was given. (I don’t know what it was, I was totally awake but RELAXED!). Actually the shot given to numb the area hurt more than the procedure itself. Tiny slivers from three different areas of the liver were remove. (Why? I don't know.) That just felt like a dull pressure.
I asked that the results be faxed but instead the nurse practitioner emailed me with this:
NURSE PRACTITIONER: "Dr. **** advises your biopsy results will be discussed with you in detail during your March 28th appointment. Briefly, I can state this: Stage 0-1 minimal scarring (no significant fibrosis) w/Grade 1. Feel free to call me after 3:30 on Monday. And, in answer to your question, yes, he still would like to discuss treatment."
Does this make sense?
I hope all my friends here are doing as well as can be expected. Each of you have continued to be in my thoughts!
~Anwaar
Welcome back and good to see you on the forum. Just this week I was wondering what had become of you. Very good idea to take some time away and enjoy yourself before facing such a serious choice.
I'm not sure I can give you much guidance here, because my situation was not one that admitted of any doubt about whether to treat or not treat. My GI told me that I needed treatment right away if I hoped to save my liver. This is a doctor I trust implicitly. Prior to this crisis he had diagnosed my advanced stage rectal cancer and immediatly (same day he found the growth) assembled a team with whom he worked to save my life. So when he told me I required immediate treatment for the Hep C, I was well disposed to believe him. He also assured me that he would treat me himself if I requested this but preferred to bring a hep specialist into his practice to assure me of the best possible care. The following week he took in a partner (Hepatologist) with particularly up-to-date experence in Hep C. I underwent a liver scan and biopsy on my 50th birthday (July 25) and as soon as the results came back we mapped out a course of tx. I began SOC tx (48 weeks, geno 1a) on September 7 (the time it took to get test results back and get insurance authorization for the meds.)
Because I had an ongoing excellent relationship with a GI doc who knew my history, I did not hesitate to follow his advice. I do not regret my decision. I am responding well (RVR) and have every hope for the best possible outcome.
If I had been given an option to treat now or wait, I still believe I would have opted to get this done and put the whole thing behind me - but that is speculation on my part. There simply was no other viable choice. Also, my choice would be influenced by the recent cancer treatment. I'm so tired of being ill and would do anything to get past these medical issues. I'm so sick of being a patient and I dream of the day when I can just be a person again.
Not sure if this is of any help to you, its such a personal decision. Developing a good rapport with your medical team can make a huge difference in the course of your treatment. Listen to your body, trust your gut reactions to the professionals on your case. Ask every question and challenge answers that don't make sense to you. You will find the way forward, and remember we are always here to listen and advise.
You've been on my mind lately. Please keep posting with your questions and concerns.
Be well.
jd
My decision was made easy by the urgency of the situation and by my prior experience with my GI doctor
I'm not sure I can give you much guidance here, because my situation was not one that admitted of any doubt about whether to treat or not treat. My GI told me that I needed treatment right away if I hoped to save my liver. This is a doctor I trust implicitly. Prior to this crisis he had diagnosed my advanced stage rectal cancer and immediatly (same day he found the growth) assembled a team with whom he worked to save my life. So when he told me I required immediate treatment for the Hep C, I was well disposed to believe him. He also assured me that he would treat me himself if I requested this but preferred to bring a hep specialist into his practice to assure me of the best possible care. The following week he took in a partner (Hepatologist) with particularly up-to-date experence in Hep C. I underwent a liver scan and biopsy on my 50th birthday (July 25) and as soon as the results came back we mapped out a course of tx. I began SOC tx (48 weeks, geno 1a) on September 7 (the time it took to get test results back and get insurance authorization for the meds.)
Because I had an ongoing excellent relationship with a GI doc who knew my history, I did not hesitate to follow his advice. I do not regret my decision. I am responding well (RVR) and have every hope for the best possible outcome.
If I had been given an option to treat now or wait, I still believe I would have opted to get this done and put the whole thing behind me - but that is speculation on my part. There simply was no other viable choice. Also, my choice would be influenced by the recent cancer treatment. I'm so tired of being ill and would do anything to get past these medical issues. I'm so sick of being a patient and I dream of the day when I can just be a person again.
Not sure if this is of any help to you, its such a personal decision. Developing a good rapport with your medical team can make a huge difference in the course of your treatment. Listen to your body, trust your gut reactions to the professionals on your case. Ask every question and challenge answers that don't make sense to you. You will find the way forward, and remember we are always here to listen and advise.
You've been on my mind lately. Please keep posting with your questions and concerns.
Be well.
jd
My decision was made easy by the urgency of the situation and by my prior experience with my GI doctor
Susan,
You have been a support both here and privately already!. I appreciate these comments. I am leaning toward not treating immediately, but still undecided. However, what you've said is the real crux of matter ~~> SUPPORT in place. That, is excellent advice. Thank you, Susan... that is something I will be sure is in place... Reading your present and post comments shows you are great support to many members here. And I appreciate your kindness and taking me under your wing when I came in here! ~Anwaar
You have been a support both here and privately already!. I appreciate these comments. I am leaning toward not treating immediately, but still undecided. However, what you've said is the real crux of matter ~~> SUPPORT in place. That, is excellent advice. Thank you, Susan... that is something I will be sure is in place... Reading your present and post comments shows you are great support to many members here. And I appreciate your kindness and taking me under your wing when I came in here! ~Anwaar
Myown: Thank you so much for your comments!!! They are so appreciated! You almost make treatment appear appetizing! lol...
Seriously, I see your point(s) and it shows your sincere concern about me personally, and my condition; and your support means very much to me. I really appreciate your comments. Your particular comment, ". Also when your liver is not working properly, it has a domino effect on your entire body." Interestingly, I did get the impression from the nurse practitioner when she says, "No significant liver damage", and speaking subsequently with someone else that is quite familiar with liver disease stating "Your biopsy results are just as good and perhaps somewhat better than someone without HCV", that perhaps that may blow the theory of my liver not working properly, having a domino effect on my entire body, to smithereens (not by my definition, but by the nurse practitioner and other medical experts I subsequently spoke with - YIKES... everybody has an opinion! Now to wade through it all :) ).
No, I didn't see the 'debate' discussion of which you speak. I am sure from your description it was interesting. Perhaps someone will cite and/or link us to it. As far as popcorn, I'm not much into drama on this sort of thing, but if it is educational and/or informative, I'm sure it will be worth the read. I do enjoy humor though.. and if it has that.. it will make it pleasant along with informative. (A GREAT PLUS!!) It is when comments turn mean spirited here that turns me from reading so much. I like opinions but when someone feels the need to debate, I hope to shout they have studies to back themselves... or ... well... it just becomes entertainment, a lot of head shaking ... just my humble opinion.
Thank you so much for your well wishes and I am certainly taking it, and anything else anyone else says into consideration. I hope I get others' opinions.
I am hooked up with a liver specialist (and looking forward to more discussions with him on the 28th of this month), I'm hoping he will work with me with my decisions - whether I treat immediately or wait. And If i do choose to wait, which I'm leaning towards, that he will monitor my liver on a regular basis should I decide not to treat. I'm just still undecided.. and that's why I appreciate your or anyone's intake.
~Anwaar
Seriously, I see your point(s) and it shows your sincere concern about me personally, and my condition; and your support means very much to me. I really appreciate your comments. Your particular comment, ". Also when your liver is not working properly, it has a domino effect on your entire body." Interestingly, I did get the impression from the nurse practitioner when she says, "No significant liver damage", and speaking subsequently with someone else that is quite familiar with liver disease stating "Your biopsy results are just as good and perhaps somewhat better than someone without HCV", that perhaps that may blow the theory of my liver not working properly, having a domino effect on my entire body, to smithereens (not by my definition, but by the nurse practitioner and other medical experts I subsequently spoke with - YIKES... everybody has an opinion! Now to wade through it all :) ).
No, I didn't see the 'debate' discussion of which you speak. I am sure from your description it was interesting. Perhaps someone will cite and/or link us to it. As far as popcorn, I'm not much into drama on this sort of thing, but if it is educational and/or informative, I'm sure it will be worth the read. I do enjoy humor though.. and if it has that.. it will make it pleasant along with informative. (A GREAT PLUS!!) It is when comments turn mean spirited here that turns me from reading so much. I like opinions but when someone feels the need to debate, I hope to shout they have studies to back themselves... or ... well... it just becomes entertainment, a lot of head shaking ... just my humble opinion.
Thank you so much for your well wishes and I am certainly taking it, and anything else anyone else says into consideration. I hope I get others' opinions.
I am hooked up with a liver specialist (and looking forward to more discussions with him on the 28th of this month), I'm hoping he will work with me with my decisions - whether I treat immediately or wait. And If i do choose to wait, which I'm leaning towards, that he will monitor my liver on a regular basis should I decide not to treat. I'm just still undecided.. and that's why I appreciate your or anyone's intake.
~Anwaar
Sorry, I wasn't annoyed at all, just making some points, perhaps hurriedly so they may have come off that way. Maybe I haven't been following things that closely, but I don't remember you ever discussing your neuropathy prior to treatment. What makes you think it wasn't caused, or at least flared by the interferon? Anyway, I'm putting this subject to bed, literally. Night :)
-- Jim
-- Jim
Jim,
Everyone does have to make up their own mind,I agree but they need to hear it all IF we are truly a 'support group.'. I have sx that the disease, not the interferon, has caused. I don't like sitting down at my piano and having my hands go numb on me. IF I would have known exactly when I contracted the disease and IF someone would have told me that HCV can cause Neuropathy and it would affect my hands, I would have said "pass me the interferon,,, I will take my chances with the meds, cause I don't want Neuropathy". So everyone needs to know BOTH sides. Yes, you, without a doubt from what you have mentioned on forum, have post sx and there are others that do also. But there are many that have sx from the disease alone. Cryo is and can be very dangerous and very little is ever mentioned about this and I am talking about doctors - they rarely tell anyone about it. Many people on forum have said they have never heard of it.
But like I said, the thread with you and mike was covered it all.
When a patient goes to a "pro treatment" doctor, they will rarely hear the good points that you bring out about tx and possible post sx,,,BUT also, when a patient goes to a "Wait and Watch" doctor, they will never hear what mike discussed,,,so for those reasons I enjoyed reading that thread.
I know sometimes - well alot of times I should say,,,,it is so easy to misunderstand someone on the internet. But you seem annoyed that I mentioned the thread with you and mike..Maybe that's not the case. My intent was only to give Anwaar something to help him decide.
But anyway, I'm tired - had a long day.
See ya,
MO
Everyone does have to make up their own mind,I agree but they need to hear it all IF we are truly a 'support group.'. I have sx that the disease, not the interferon, has caused. I don't like sitting down at my piano and having my hands go numb on me. IF I would have known exactly when I contracted the disease and IF someone would have told me that HCV can cause Neuropathy and it would affect my hands, I would have said "pass me the interferon,,, I will take my chances with the meds, cause I don't want Neuropathy". So everyone needs to know BOTH sides. Yes, you, without a doubt from what you have mentioned on forum, have post sx and there are others that do also. But there are many that have sx from the disease alone. Cryo is and can be very dangerous and very little is ever mentioned about this and I am talking about doctors - they rarely tell anyone about it. Many people on forum have said they have never heard of it.
But like I said, the thread with you and mike was covered it all.
When a patient goes to a "pro treatment" doctor, they will rarely hear the good points that you bring out about tx and possible post sx,,,BUT also, when a patient goes to a "Wait and Watch" doctor, they will never hear what mike discussed,,,so for those reasons I enjoyed reading that thread.
I know sometimes - well alot of times I should say,,,,it is so easy to misunderstand someone on the internet. But you seem annoyed that I mentioned the thread with you and mike..Maybe that's not the case. My intent was only to give Anwaar something to help him decide.
But anyway, I'm tired - had a long day.
See ya,
MO
That is a good result on your biopsy. Treating is an individual decision for each person. You know your own life situation. You do have an excellent chance at clearing this virus. Having no damage, it's actually easier to clear it at this point. However, treatment is not really a walk in the park. Do you have a good support system in place? If you do, it might be something to take a good, hard look at doing it. But, it's all your call and nobody can pressure you into it.
Susan
Susan
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