biopsy results came back positive for cancer/recurrance
Comments
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Joannajoannaw81 said:Kent but after recurrent or
Kent but after recurrent or metastasic cancer isn't the surgury the only option? my major concern is to get the second opinion about the chemo. are you saying that my mom can get away without the surgury? she is not able to get radiaition becasue she just finished one in February. I am so confused....
Yes, it would seem that surgery is the primary option for a second bout with C, especially so soon after the first bout. However, the quality of that surgery, along with any additional treatment options, would be my main concern. That gal from upstate NY who investigated down in NYC checked-out the "robotic" option, which is said to be more patient-friendly in the amounth of tongue, etc., being removed. I think it's safe to say the quality of the surgery would be more likely better at SK- you will know your Mom is getting the best of surgery options.
ALSO, and I don't think you can minimize this, there is the factor on the quality of Dr/Surgeon/C team, who will be the ones to determine just exactly what needs to be done in the Op. Though what needs to be removed, if SK also feels that's the only option, in surgery may involve much of the same tissue and tongue, there may be a difference in the total amount of what will be removed. And that difference in the amount might not seem like a lot to you or I, but it might really be more significant to your Mom, and might be an amount that Drs would recognize as significant.
Know, Joanna, that this Op your Mom has staring her in the face is a Major Op, which will take some time to recover from, and will change her. We in H&N survive, but a number of those here who've had far greater battles with C than I have can tell you of the post-Op magnitude of the Major H&N Op- it is large. My Cousin recently had a Major in Peoria, and they thought prior to going in that they'd have to remove the base of his tongue, also, but once they cut him realized that wasn't necessary- and that was very significant.
Again, it is your call. I recently postposed an Op at a local Kidney Center surgical unit due to a secondary issue the Drs weren't all that concerned with. When I took it to my Primary Care Physician, he said I'd done the right/wise thing. That secondary issue has now been taken care of, and I'm having that Op this Friday morning. Yes, it would be untypical to call-off the Op, but not untypical to the negative, as you have that 10/19 thing as SK lined-up, which is to say you'd be calling it off for the right reasons.
kcass0 -
Kent,bu my mom's cancer isKent Cass said:Joanna
Yes, it would seem that surgery is the primary option for a second bout with C, especially so soon after the first bout. However, the quality of that surgery, along with any additional treatment options, would be my main concern. That gal from upstate NY who investigated down in NYC checked-out the "robotic" option, which is said to be more patient-friendly in the amounth of tongue, etc., being removed. I think it's safe to say the quality of the surgery would be more likely better at SK- you will know your Mom is getting the best of surgery options.
ALSO, and I don't think you can minimize this, there is the factor on the quality of Dr/Surgeon/C team, who will be the ones to determine just exactly what needs to be done in the Op. Though what needs to be removed, if SK also feels that's the only option, in surgery may involve much of the same tissue and tongue, there may be a difference in the total amount of what will be removed. And that difference in the amount might not seem like a lot to you or I, but it might really be more significant to your Mom, and might be an amount that Drs would recognize as significant.
Know, Joanna, that this Op your Mom has staring her in the face is a Major Op, which will take some time to recover from, and will change her. We in H&N survive, but a number of those here who've had far greater battles with C than I have can tell you of the post-Op magnitude of the Major H&N Op- it is large. My Cousin recently had a Major in Peoria, and they thought prior to going in that they'd have to remove the base of his tongue, also, but once they cut him realized that wasn't necessary- and that was very significant.
Again, it is your call. I recently postposed an Op at a local Kidney Center surgical unit due to a secondary issue the Drs weren't all that concerned with. When I took it to my Primary Care Physician, he said I'd done the right/wise thing. That secondary issue has now been taken care of, and I'm having that Op this Friday morning. Yes, it would be untypical to call-off the Op, but not untypical to the negative, as you have that 10/19 thing as SK lined-up, which is to say you'd be calling it off for the right reasons.
kcass
Kent,bu my mom's cancer is on the oral part of her tongue not base. I understad that operation for base is major but I think oral part of the tongue is much easier, what would be the point of using robotic surgury when they can see exactly where the cancer is? anyway, I will speak to my mom about it and see what she says, after all she is the one that must go trough it. thank you for responding so quickly0 -
Joannajoannaw81 said:Kent,bu my mom's cancer is
Kent,bu my mom's cancer is on the oral part of her tongue not base. I understad that operation for base is major but I think oral part of the tongue is much easier, what would be the point of using robotic surgury when they can see exactly where the cancer is? anyway, I will speak to my mom about it and see what she says, after all she is the one that must go trough it. thank you for responding so quickly
Any Op with partial tongue removal is gonna be somewhat of a Major, Joanna. Robotic might not enter the picture- it is just an example of the difference between state-of-the-art C treatment, and the also-rans, so to speak. Again, Joanna, the Drs your Mom has already trusted to do right by her have, very likely, failed to whatever degree- her C should not have returned just a year after treatment. This is not to say they won't get it right this time, but it is to say that I would not trust them that far, were I you. And we're talking about partial tongue removal, now, Joanna, which really is a big deal.
The greater issue may be the complete diagnosis SK would reach, along with SK having ALL the options available to deal with it. I would trust SK to be more capable of finding all the C there is, and dealing with it so that your Mom is clean for at least a number of years, or forever. As I've said, were my C to return and I'd be looking at surgery to physically remove/alter areas above my shoulders, I would immediately make an appointment to visit the U of Iowa in Iowa City. I live about an hour's drive away in the Quad Cities, which has two medical groups with numerous facilities scattered about. We figure there's some 325,000 people in the greater Quad City area, and so you'd think the quality of med care would be okay. But for a second bout with C that involves surgically altering me like it would- the only way that's gonna happen is with me on an Op table in Iowa City, because I will know I'm getting the best solution- there- that's possible. There's an elite number of med centers in the US for ENT and the C problem, and I feel fortunate that the U of Iowa is one of them- as is MD Anderson in Texas, etc. These elite C centers are scattered across the country, and the best we, as patients, can do is find them and use them when the C takes us to a serious procedure that's gonna be with us for the rest of our lives.
That is my opinion, and what I will do if my C returns. I do not know the C specifics of your Mom's return bout with it, but I do know a second bout with it that involves such a surgery really is a big deal.
Hope this helps, and you do discuss it with your Mom. Tell her we're all with her, here, to help what we can.
kcass0 -
Hi Joanna,I'm so sorrryKent Cass said:Joanna
Any Op with partial tongue removal is gonna be somewhat of a Major, Joanna. Robotic might not enter the picture- it is just an example of the difference between state-of-the-art C treatment, and the also-rans, so to speak. Again, Joanna, the Drs your Mom has already trusted to do right by her have, very likely, failed to whatever degree- her C should not have returned just a year after treatment. This is not to say they won't get it right this time, but it is to say that I would not trust them that far, were I you. And we're talking about partial tongue removal, now, Joanna, which really is a big deal.
The greater issue may be the complete diagnosis SK would reach, along with SK having ALL the options available to deal with it. I would trust SK to be more capable of finding all the C there is, and dealing with it so that your Mom is clean for at least a number of years, or forever. As I've said, were my C to return and I'd be looking at surgery to physically remove/alter areas above my shoulders, I would immediately make an appointment to visit the U of Iowa in Iowa City. I live about an hour's drive away in the Quad Cities, which has two medical groups with numerous facilities scattered about. We figure there's some 325,000 people in the greater Quad City area, and so you'd think the quality of med care would be okay. But for a second bout with C that involves surgically altering me like it would- the only way that's gonna happen is with me on an Op table in Iowa City, because I will know I'm getting the best solution- there- that's possible. There's an elite number of med centers in the US for ENT and the C problem, and I feel fortunate that the U of Iowa is one of them- as is MD Anderson in Texas, etc. These elite C centers are scattered across the country, and the best we, as patients, can do is find them and use them when the C takes us to a serious procedure that's gonna be with us for the rest of our lives.
That is my opinion, and what I will do if my C returns. I do not know the C specifics of your Mom's return bout with it, but I do know a second bout with it that involves such a surgery really is a big deal.
Hope this helps, and you do discuss it with your Mom. Tell her we're all with her, here, to help what we can.
kcass
Hi Joanna,
I'm so sorrry about your mother's recurrence. My mother had a recurrence from paranasal cancer less than 6 months after treatment. I agree 100% with Hondo. Get as many opinions from experienced doctors. Ask them MANY questions. Do your research thoroughly. Then like Hondo said, tell them what you want . Fight for your mother's life with a vengence. My mother's surgery last year took an hour and 15 minutes. We later found out from MD Anderson that it should have taken 9 hours to totally remove that tumor. Now we're faced with a tumor that has entered her skull. What a nightmare! I am through being so trusting. I want the best, experienced doctors. I want to ask questions and get opinions and then make the decision. This is a life or death situation Joanna and you need to make sure you're getting the very best care and treatment for your mother. I know exactly what you're going through with this.0 -
Hi Teresa, I understandtesa said:Hi Joanna,I'm so sorrry
Hi Joanna,
I'm so sorrry about your mother's recurrence. My mother had a recurrence from paranasal cancer less than 6 months after treatment. I agree 100% with Hondo. Get as many opinions from experienced doctors. Ask them MANY questions. Do your research thoroughly. Then like Hondo said, tell them what you want . Fight for your mother's life with a vengence. My mother's surgery last year took an hour and 15 minutes. We later found out from MD Anderson that it should have taken 9 hours to totally remove that tumor. Now we're faced with a tumor that has entered her skull. What a nightmare! I am through being so trusting. I want the best, experienced doctors. I want to ask questions and get opinions and then make the decision. This is a life or death situation Joanna and you need to make sure you're getting the very best care and treatment for your mother. I know exactly what you're going through with this.
Hi Tesa, I understand everything you are saying. I'm also sorry about your mom. I also want the best doctors for my mom however waiting until 8/19 for the appointment and then probably waiting again for another 2-3 weeks for surgury seems like a really long time, don't you think? Plus during surgury doctors check the margnins in the frozen section to make sure they are negative for cancer cells right? so they know when the whole tumor is out right? but like I told Kent, I mentioned all the options to my mom and she is thinking about it. we have almost 1 week until the operation.0 -
Joanna, my mother's marginsjoannaw81 said:Hi Teresa, I understand
Hi Tesa, I understand everything you are saying. I'm also sorry about your mom. I also want the best doctors for my mom however waiting until 8/19 for the appointment and then probably waiting again for another 2-3 weeks for surgury seems like a really long time, don't you think? Plus during surgury doctors check the margnins in the frozen section to make sure they are negative for cancer cells right? so they know when the whole tumor is out right? but like I told Kent, I mentioned all the options to my mom and she is thinking about it. we have almost 1 week until the operation.
Joanna, my mother's margins were negative after the surgery also. However, the doctors at MD Anderson said the surgery to toally get the tumor should have taken about 9 hours. I guess maybe there were some undetectable cells after the surgery and had it been done the right way that whole area would have been removed and cleaned. I understand about the waiting. That has been my fear with my mother because the tumor will grow. It is just a difficult decision. I think Kent is right though, make sure the doctor knows what he/she is doing, and make sure you are at a hospital with state of the art equipment and treatment options. Again, I am facing the same situation with my mother. I know it's a race against time.0 -
TonsilsSkiffin16 said:Chemo
Recurrence - Secondary, or Mets....
Not sure why the MD didn't look at chemo as an option originally.
Is this the same MD that treated the first time?
You should look into a second opinion definitely, especially concerning the possible benefits of chemo questions. If at all possible at a different facility.
Also, if it's basically in the same area, usually they don't do radiation again to that area.
BTW, I'd presume that they removed the tonsils during the original procedure and treatment before rads.
Best,
John
You know they never removed my tonsils....I figured they burnt them out. Hmmmmmm?0 -
TonsilsGreend said:Tonsils
You know they never removed my tonsils....I figured they burnt them out. Hmmmmmm?
My tonsils, specifically the right one was my primary. I also had a lymphnode that popped up on that same side as a secondary before I got in for Dx and treatment.
I had always thought my ENT only removed my right as you can see much more gone on that side (LOL, when looking in a mirror).
Anyways, my GP told me during a physical that he removed both, just more tissue on the right side.
JG0 -
Joanna / Tesajoannaw81 said:Hi Teresa, I understand
Hi Tesa, I understand everything you are saying. I'm also sorry about your mom. I also want the best doctors for my mom however waiting until 8/19 for the appointment and then probably waiting again for another 2-3 weeks for surgury seems like a really long time, don't you think? Plus during surgury doctors check the margnins in the frozen section to make sure they are negative for cancer cells right? so they know when the whole tumor is out right? but like I told Kent, I mentioned all the options to my mom and she is thinking about it. we have almost 1 week until the operation.
It is so hard to see any of our love ones suffer especially when it is the person that brought you into this world. As caregivers to your Mother you have a very special work to do and I pray that God will bless the both of you for it, we may not see it in this life but for sure in the life to come.
God bless and be with you both and you’re Mothers
Hondo0 -
Hi,
I am going through aHi,
I am going through a similar situation. I finished my treatment for tonsil cancer and after numerous scans, I finally had a biopsy. It seems that there is something that was not clear (a scar or still cancer). I have my appointment next week and I am getting worried as I have difficulty swallowing on the other side this time. Everytime I went for a check up they never said anything about that. Could it be that what they saw has spread to the other side? I am really nervous at the thought of going through all the treatments again. So I do understand your concerns. Fingers crossed!
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hi julie. welcome to thejulie44 said:Hi,
I am going through aHi,
I am going through a similar situation. I finished my treatment for tonsil cancer and after numerous scans, I finally had a biopsy. It seems that there is something that was not clear (a scar or still cancer). I have my appointment next week and I am getting worried as I have difficulty swallowing on the other side this time. Everytime I went for a check up they never said anything about that. Could it be that what they saw has spread to the other side? I am really nervous at the thought of going through all the treatments again. So I do understand your concerns. Fingers crossed!
hi julie. welcome to the club but sorry you have to be here. this is a very old post and may not get the attention you need. it would be better if you copy and pasted it to a new topic. i will be praying it is scar tissue and nothing more. i know your fear well as I had a recurrence and anything new plays havoc with our nerves. try to calm down and think the best. good luck and please let us know how it comes out.
God bless you,
dj
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Another possible option...
Hello, I am cutting and pasting an answer I just posted under a different heading. I, obviously am a big fan of immunotherapy. Good luck!!
Hello, I do not post often but do read the posts. I was originally diagnosed in 2012 with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.
I"m more than happy to answer questions if you would like.
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Immunotherapylouhou13 said:Another possible option...
Hello, I am cutting and pasting an answer I just posted under a different heading. I, obviously am a big fan of immunotherapy. Good luck!!
Hello, I do not post often but do read the posts. I was originally diagnosed in 2012 with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.
I"m more than happy to answer questions if you would like.
I will 2nd the above comment. I have had great success on Medi 4736.
My suggestions for H&N cancer:
I have read that if it is due to HPV (human papaloma virus) then radiation is very effective. Go for it.
If not, I would not do radiation. It did nothing for me but cause trouble. Radiation is a cruel and dangerous high energy, barbaric attempt at killing cells. Your salivary glands will be the first to suffer. They are very sensitive to it.
A much more sane method is to use the power of your own immune system to kill the cancer cells. Get your cancer sequenced and find a group of experts that will put you on the immunotherapy that is best for you.
Just my opinon after a few years of experience.
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I didn’t have immunotherapyKiller-T said:Immunotherapy
I will 2nd the above comment. I have had great success on Medi 4736.
My suggestions for H&N cancer:
I have read that if it is due to HPV (human papaloma virus) then radiation is very effective. Go for it.
If not, I would not do radiation. It did nothing for me but cause trouble. Radiation is a cruel and dangerous high energy, barbaric attempt at killing cells. Your salivary glands will be the first to suffer. They are very sensitive to it.
A much more sane method is to use the power of your own immune system to kill the cancer cells. Get your cancer sequenced and find a group of experts that will put you on the immunotherapy that is best for you.
Just my opinon after a few years of experience.
I didn’t have immunotherapy treatment, only classic concurrent chemo and radiation.
However, based on the mechanism of action a combination therapy with anti-PD-L1 (MEDI4736) AND anti-CTLA-4 (Tremelimumab) should be (again, key word - hypothetically) more effective. There is an ongoing clinical trial: “Phase II Study of MEDI4736, Tremelimumab, and MEDI4736 in Combination w/ Tremelimumab Squamous Cell Carcinoma of the Head and Neck”
The catch is this is a randomized study, and you can end up getting either one, or both.
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