biopsy results came back positive for cancer/recurrance

joannaw81

one year out after treatement for tonsil cancer stage 3 with 1 lymph node/ readiation, no chemo, my mom is facing recurrance in her tongue. it is on the side of her tongue not base, hopefully of course since we did not have any scans yet, her last pet scan was a at the beginning of June and it came up clear although she had that thing on her tobgueeven before the pet scan but doctors kept saying that it must be a side effect from radiaiton until last week when the decided to do the biopsy. why did they wait that long to do biopsy? doctor wants to do surgury now to remove more of her tongue (during biopsy he removed the whole bump which was sticking out but I guess the margins were positive). Mom has pain in her tongue, throat during swallowing and a little ear pain. Not sure what to think, did the cancer also reocur in the original place (tonsil)? doctor told me over the phone that he thinks it's secondary not metastasic and that he does not think she needs chemo which is really weird to me..... I am so scared, 1 year later we are facing the same battle, even worse. Not sure what to expect, I need as much info about recurrance as possible. Also can pathology report from biopsy show if the cancer is metastasic or secondary? what is the difference in prognosis? Please pray for my mom....

Hondo

Hi Joanna
I understand where you are coming from but there is always hope. My NPC Cancer came back three times before I finial get it licked, sometimes that is just how it is. For now listen to what the doctors are saying and then get a second opinion or even a 3rd opinion if you believe you need it. I too am puzzled by the no chemo both times so for sure get the second opinion.

Praying for both you and Mom
Hondo

KTeacher

So Sorry
I do not have much information for you but I am also fighting for the second time. Pathology can tell if it is mets. I am close to the end of radiation (8 days left). Mine was mets. Very rare (everything is for me!). Never showed up on PET Scan. Keep up the good fight.

Skiffin16

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

Kent Cass

Joanna
So sorry to hear of your Mother's story. Unfortunately, I think it likely her Drs were VERY VERY WRONG with their initial treatment of her stage-3 a year ago. In fact, I think you and her have every right to be rather angered by it.

So, I have to ask you- was she treated at a small C center by an ENT-Onco-Rad team without much experience? I really do want to know- and I think every one of us must wonder what your answer is. H&N is best dealt with by getting both Chemo and Rads, as almost all of us have been. Years ago only getting blasted with the Rads was not uncommon, but that was years ago, and a number of patients woulda been far better off if they'd had both.

I am a NPC Survivor of 28+-months. My ENT told me after my Positive return for this C that they used to treat it with just the Rads, but now know that the combo of Chemo and Rads is far better. And he told me this in early-09. And, I personally know of a man who was treated with only Rads for H&N back in the early-2000s, and within a couple years it came back with a vengance. And, rather than being treated locally, he went to the U of Iowa, which is one of the better C centers in the US, and they told him his first treatment had been wrong- that he shoulda had both Chemo and Rads. He ended-up going thru one of those 14 to 15-hour Ops with tongue removal, and a whole lot more. Again, the U of Iowa C team told him, straight-up, that his first treatment had not been what it shoulda been, and they blamed his smaller-town C team Drs for not doing right by him. And that was years ago, now. And your Mother's first treatment was only a year ago, and it's back in a major way? Yeah- I'd say you got cause to be riled a bit.

That said, going forward I would advise you to get the best C care possible for your Mom. People can only get a limited amount of Rads without having damage to nerves and tissues that make another round of Rads prohibitive, which is another reason why the combo is the best initial treatment. And because your Mom has already had a full course of Rads, and that option may be limited, now- you really should get her to the best C team within your physical and monetary means. Not sure your first C team of Drs have earned another shot at helping your Mom, and nobody can find fault with going to a major C center. If my C comes back, for instance- I will go to the U of Iowa without a second thought.

Please keep us informed, and don't hesitate to ask questions, or express concerns. We are all here to help win battles with C.

kcass

joannaw81

Kent Cass said:

Joanna
So sorry to hear of your Mother's story. Unfortunately, I think it likely her Drs were VERY VERY WRONG with their initial treatment of her stage-3 a year ago. In fact, I think you and her have every right to be rather angered by it.

So, I have to ask you- was she treated at a small C center by an ENT-Onco-Rad team without much experience? I really do want to know- and I think every one of us must wonder what your answer is. H&N is best dealt with by getting both Chemo and Rads, as almost all of us have been. Years ago only getting blasted with the Rads was not uncommon, but that was years ago, and a number of patients woulda been far better off if they'd had both.

I am a NPC Survivor of 28+-months. My ENT told me after my Positive return for this C that they used to treat it with just the Rads, but now know that the combo of Chemo and Rads is far better. And he told me this in early-09. And, I personally know of a man who was treated with only Rads for H&N back in the early-2000s, and within a couple years it came back with a vengance. And, rather than being treated locally, he went to the U of Iowa, which is one of the better C centers in the US, and they told him his first treatment had been wrong- that he shoulda had both Chemo and Rads. He ended-up going thru one of those 14 to 15-hour Ops with tongue removal, and a whole lot more. Again, the U of Iowa C team told him, straight-up, that his first treatment had not been what it shoulda been, and they blamed his smaller-town C team Drs for not doing right by him. And that was years ago, now. And your Mother's first treatment was only a year ago, and it's back in a major way? Yeah- I'd say you got cause to be riled a bit.

That said, going forward I would advise you to get the best C care possible for your Mom. People can only get a limited amount of Rads without having damage to nerves and tissues that make another round of Rads prohibitive, which is another reason why the combo is the best initial treatment. And because your Mom has already had a full course of Rads, and that option may be limited, now- you really should get her to the best C team within your physical and monetary means. Not sure your first C team of Drs have earned another shot at helping your Mom, and nobody can find fault with going to a major C center. If my C comes back, for instance- I will go to the U of Iowa without a second thought.

Please keep us informed, and don't hesitate to ask questions, or express concerns. We are all here to help win battles with C.

kcass

yes she had a surgury,
yes she had a surgury, removal of left tonsil and neck dissection with 15 lymph nodes removed. She was treated at Hackensack medical center in NJ. I aksed the doctors many times after surgury why she will not have chemo and they said if it is only 1 lymph node involved then she does not have to have chemo. I was uncertain about this decision from the beggining. I will now make an appoitment at Sloan Kittering in NY for a second opinion. We have full converage insurnce. I know surgury is the first option for recurrance (salvage surgury)but is there any other options, how does chemo work on that type of cancer?

Hondo

joannaw81 said:

yes she had a surgury,
yes she had a surgury, removal of left tonsil and neck dissection with 15 lymph nodes removed. She was treated at Hackensack medical center in NJ. I aksed the doctors many times after surgury why she will not have chemo and they said if it is only 1 lymph node involved then she does not have to have chemo. I was uncertain about this decision from the beggining. I will now make an appoitment at Sloan Kittering in NY for a second opinion. We have full converage insurnce. I know surgury is the first option for recurrance (salvage surgury)but is there any other options, how does chemo work on that type of cancer?

Hi Joanna

I think you are make a good move and getting the 2nd or even a 3rd opinion sometimes is what is needed so YOU can make a better Choice on what you need to do. Not taking anything away from out doctors but sometimes they want to make the choice for you, I don’t believe in that. Give me all the information and all the options and I will tell you what I want to do. A lot of doctors don’t like me too much for being like that, I am now on my 7th ENT and 3rd Oncal man and yes I have beat the odds and I am still alive.

You too can do it for your Mom, study and find out as much info as you can about her cancer and its treatment for a second time, and don’t be afraid to question your doctor.

Praying for you both
Hondo

Kent Cass

joannaw81 said:

yes she had a surgury,
yes she had a surgury, removal of left tonsil and neck dissection with 15 lymph nodes removed. She was treated at Hackensack medical center in NJ. I aksed the doctors many times after surgury why she will not have chemo and they said if it is only 1 lymph node involved then she does not have to have chemo. I was uncertain about this decision from the beggining. I will now make an appoitment at Sloan Kittering in NY for a second opinion. We have full converage insurnce. I know surgury is the first option for recurrance (salvage surgury)but is there any other options, how does chemo work on that type of cancer?

Joanna
Sloan Kittering sounds like an excellent choice- you are doing the right thing. Know, Joanna, that the fact it came back so quickly is proof the Hackensack Drs were not in the right. Gal from upstate NY awhile back made us aware that NY city has 3 top-notch C centers, including SK, and every option is available at one or more of them, including robotic Ops. One of the keys is to see every Dr with an option at SK to make sure what is done is the best option- Surgeons can only tell you of their surgery option, and the Onco typically of the Chemo, and the Rad Dr of Rad treatment. The ENT is the one supposed to steer you to the right one(s) to see. Prayers are with you and your Mom.

Believe

kcass

ToBeGolden

In Very Similar Situation
I'm a year after Rad for vocal cord C, S2 N=0. The tumor was almost small enough to be Stage 1. Well, something is back. A biopsy showed dysplasia. I'm on antibiotics and steroids and scheduled for another biopsy in a month. ENT said a PET would not be definitive in my case because both cancer and inflamation will light up.

The whole of my right side of my face hurts. This includes intense right ear pain. I'm trying to stretch out the Vicodin, but I'm not sure I'll make it to the next biopsy.

Sorry to horn in on your mother's thread, especially since I do not have any advice. Just wanted to let you know that there is another round 1 survivor in the same boat.

Jimbo55

Good Idea 2nd Opinion
Joanna,

Agree with the others here regarding the chemo. I would think that should be included in her treatment plan. A 2nd opinion, even a 3rd one if necessary, make sure they get it right this time around. Hoping for the best for you and your Mom. Cheers.

Jimbo

Hondo

Kent Cass said:

Joanna
Sloan Kittering sounds like an excellent choice- you are doing the right thing. Know, Joanna, that the fact it came back so quickly is proof the Hackensack Drs were not in the right. Gal from upstate NY awhile back made us aware that NY city has 3 top-notch C centers, including SK, and every option is available at one or more of them, including robotic Ops. One of the keys is to see every Dr with an option at SK to make sure what is done is the best option- Surgeons can only tell you of their surgery option, and the Onco typically of the Chemo, and the Rad Dr of Rad treatment. The ENT is the one supposed to steer you to the right one(s) to see. Prayers are with you and your Mom.

Believe

kcass

I agree Kent

As the same thing happened to me; my NPC was stage 1 back in 2002 and the doctor I had never seen NPC cancer or treated it before, this was at a locae city Cancer institution. But he never told me that, and then he said I did not need chemo, right then and there I should have known something was wrong. But like everyone who is just starting I put my life into his hands because he told me I had a 95% cure rate. What a mistake I made by not going to MD Anderson or to the Mayo clinic the first time, almost cost me my life.
When dealing with cancer get the best doctor you can and look to one of the major cancer institution in the US for real help.

Hondo

joannaw81

Jimbo55 said:

Good Idea 2nd Opinion
Joanna,

Agree with the others here regarding the chemo. I would think that should be included in her treatment plan. A 2nd opinion, even a 3rd one if necessary, make sure they get it right this time around. Hoping for the best for you and your Mom. Cheers.

Jimbo

thank you all for your
thank you all for your answers, I will get a second opinion and third if I have to. I am ready to fight again, I hope my mom is as also ready. I will keep you posted on what's going on. Finally I found support here on this web site, thank you

Hondo

ToBeGolden said:

In Very Similar Situation
I'm a year after Rad for vocal cord C, S2 N=0. The tumor was almost small enough to be Stage 1. Well, something is back. A biopsy showed dysplasia. I'm on antibiotics and steroids and scheduled for another biopsy in a month. ENT said a PET would not be definitive in my case because both cancer and inflamation will light up.

The whole of my right side of my face hurts. This includes intense right ear pain. I'm trying to stretch out the Vicodin, but I'm not sure I'll make it to the next biopsy.

Sorry to horn in on your mother's thread, especially since I do not have any advice. Just wanted to let you know that there is another round 1 survivor in the same boat.

I hate Pain

Vicodin is some pretty strong stuff hope it is working for you. I was on Oxzcotten for a few months but it after a while was not doing any good. I was not sure if it was me or the meds was being down graded. I was happy when I was finally able to find my problem and get off the hard drugs. Now I am on Tramadol and Tylenol 3 times a day and doing great.

Wishing you the best in help with pain
Hondo

Hondo

joannaw81 said:

thank you all for your
thank you all for your answers, I will get a second opinion and third if I have to. I am ready to fight again, I hope my mom is as also ready. I will keep you posted on what's going on. Finally I found support here on this web site, thank you

Joanna

We are all one big family here and most of us have all been to where you are now. Anything I can do to help and I am sure everyone feels the same, just let us know.

Wishing you well
Hondo

Skiffin16

joannaw81 said:

yes she had a surgury,
yes she had a surgury, removal of left tonsil and neck dissection with 15 lymph nodes removed. She was treated at Hackensack medical center in NJ. I aksed the doctors many times after surgury why she will not have chemo and they said if it is only 1 lymph node involved then she does not have to have chemo. I was uncertain about this decision from the beggining. I will now make an appoitment at Sloan Kittering in NY for a second opinion. We have full converage insurnce. I know surgury is the first option for recurrance (salvage surgury)but is there any other options, how does chemo work on that type of cancer?

Another Place & Different MD's...
Second Opinion & Different Facility

Skiffin16

Tonsils and One Lymphnode
It was the tonsils and one lymphnode.....

I had the exact same diagnosis STGIII SCC HPV+ Tonsil Cancer and one lymphnode, only the right side.

They took both tonsils out during the initial surgery before treatment started.

OH, and they also prescribed and I had "Four types of Chemo", Cisplatin, Taxotere, 5FU and Carboplatin along with the 35 rads sessions.

So to dismiss chemo by stating she only has one lymphnode involved seems pretty optimistic to me and the experience that I went through for treatment.

Not to mention that they are prescribing a treatment plan that obviously didn't work they first time, now they want to do it again.....

JG

jim and i

praying
Joanna,

So sorry to hear about your moms recurrence. I am definately praying for her and for you. I know what you mean about wanting your mom to fight but I also know that we are not the ones suffering the treatment. My husband said he will not go through tht torture again. I have not asked him since treatment ended if he feels the same. I pray we do not have to cross that bridge.

I thank God every day that we found Florida Hospital Cancer Institute. They have a coordinator for each type of cancer and the coordinator helped us with info, encouragement and compassion. I do not know how we would have navigated those first few weeks after diagnosis with out her help. Sloan Kettering sounds like the place. They are rated in the top of Cancer Centers.

God Bless
Debbie

buzz99

I am not sure about what secondary means vs metastatic. If the cell type from the recent biopsy is the same as the orginal cancer, then that is recurrent cancer. If the cancer is found in another part of the body then that means it is metastatic. I am so sorry you mom is again dealing with cancer. Chemo may be an option but in our situation, Buzz has been offered clinical trials for his recurrent cancer because he has already had the standard protocol (Cisplatin, Taxotere, 5FU, and Erbitux) and it failed. Hoping you get some answers soon. Karen

joannaw81

buzz99 said:

I am not sure about what secondary means vs metastatic. If the cell type from the recent biopsy is the same as the orginal cancer, then that is recurrent cancer. If the cancer is found in another part of the body then that means it is metastatic. I am so sorry you mom is again dealing with cancer. Chemo may be an option but in our situation, Buzz has been offered clinical trials for his recurrent cancer because he has already had the standard protocol (Cisplatin, Taxotere, 5FU, and Erbitux) and it failed. Hoping you get some answers soon. Karen

hello, we went to the doctor
hello, we went to the doctor today and we scheduled a surgury for next thursday. Doctor still says she will not need chemo because chemo does not cure this type of cancer it only helps when used during radiation.I chose not to listen to him and after surgury we wll go for second and even third opinion. Originally my mom's tonsil cancer was squamous cell carcinoma poorly differenciated and now from her tongue it came moderely differenciated,I know moderely is better then poorly but still does this explain why the doctor says that it is secondary not metastasic? I am not sure if I am stupid or the doctor is. I feel like I have researched a lot and I do not agree with what he says.... I am even afraid to let him peform the surgury again but I do not have a choice becasue I was only able to make an appointment for her at Sloan Kittering for 10/19, I would not want to wait that long.

Kent Cass

joannaw81 said:

hello, we went to the doctor
hello, we went to the doctor today and we scheduled a surgury for next thursday. Doctor still says she will not need chemo because chemo does not cure this type of cancer it only helps when used during radiation.I chose not to listen to him and after surgury we wll go for second and even third opinion. Originally my mom's tonsil cancer was squamous cell carcinoma poorly differenciated and now from her tongue it came moderely differenciated,I know moderely is better then poorly but still does this explain why the doctor says that it is secondary not metastasic? I am not sure if I am stupid or the doctor is. I feel like I have researched a lot and I do not agree with what he says.... I am even afraid to let him peform the surgury again but I do not have a choice becasue I was only able to make an appointment for her at Sloan Kittering for 10/19, I would not want to wait that long.

After surgery?
Joanna- having to wait until 10/19 is not necessarily a big deal, as that's only a couple weeks away. And this Operation is gonna live with your Mom for the rest of her life. And, waiting to get a 2nd opinion until after the Operation makes me wonder why you are bothering to even get a 2nd opinion.

Keep in mind, Joanna, that C is a long-term disease. My C first showed with two neck tumors in November of 08. I didn't see an ENT until mid-December, and the Biopsy that came back Positive for NPC didn't happen until 12/21, followed by my first Pet Scan on 12/31. And in January 09 my C team formed their treatment plan, which included the Port and PEG installations, and another surgical Biopsy. It wasn't until early-February that treatment actually started. Hence, you're concerned to this max about waiting a couple weeks to get seen at a world-class C center, wheras I had to wait over two months to get treatment started! Joanna- I'm a week away from being clean for 30-months, as my 2-year PS/CT came back clean on April 4th of 2011.

HAVING TO WAIT A COUPLE WEEKS MIGHT NOT MAKE AS MUCH OF A DIFFERENCE AS THE QUALITY OF OPTIONS SK MIGHT HAVE THAT YOUR HACKENSACK DR DOES NOT. It's your call, and your Mom's. The bottom-line, though, is whatever results from the Op on Thursday, if she goes thru it, is your decision/responsibility, and you'll have no grounds for any complaining, etc., about those results. I do hope and Pray for the best for her; but, knowing what I do, I think you're making a mistake by not waiting to see what SK would do about where she is at, now.

kcass

joannaw81

Kent Cass said:

After surgery?
Joanna- having to wait until 10/19 is not necessarily a big deal, as that's only a couple weeks away. And this Operation is gonna live with your Mom for the rest of her life. And, waiting to get a 2nd opinion until after the Operation makes me wonder why you are bothering to even get a 2nd opinion.

Keep in mind, Joanna, that C is a long-term disease. My C first showed with two neck tumors in November of 08. I didn't see an ENT until mid-December, and the Biopsy that came back Positive for NPC didn't happen until 12/21, followed by my first Pet Scan on 12/31. And in January 09 my C team formed their treatment plan, which included the Port and PEG installations, and another surgical Biopsy. It wasn't until early-February that treatment actually started. Hence, you're concerned to this max about waiting a couple weeks to get seen at a world-class C center, wheras I had to wait over two months to get treatment started! Joanna- I'm a week away from being clean for 30-months, as my 2-year PS/CT came back clean on April 4th of 2011.

HAVING TO WAIT A COUPLE WEEKS MIGHT NOT MAKE AS MUCH OF A DIFFERENCE AS THE QUALITY OF OPTIONS SK MIGHT HAVE THAT YOUR HACKENSACK DR DOES NOT. It's your call, and your Mom's. The bottom-line, though, is whatever results from the Op on Thursday, if she goes thru it, is your decision/responsibility, and you'll have no grounds for any complaining, etc., about those results. I do hope and Pray for the best for her; but, knowing what I do, I think you're making a mistake by not waiting to see what SK would do about where she is at, now.

kcass

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....