In need of advice

saranaz

HI everyone:

 My mom lives in Iran, we have pretty good doctors there, but SCC is a strange  cancer since it is not talked about that much. She was diagnosed last summer with T2 SCC she had surgery and Radiation (33 sessions) but in December she had to have another surgery and the doctor said he got 90% of the tumor but a small scar is left at the back of her tongue. Her new doctor, a more experienced one, has now recommended Chemo (8 sessions) her bip[sies came back as a T4 but no lymph nodes or other parts are affected. She has a feeding tube and has another 4 sessions of chemo. She feels really crappy (sorry lack of a better word) and I am away from her, I am doing a Ph.D. in the States. I a just looking for some insight from those who have experienced this and experienced some set -back (needing surgery again and further treatment. I am very worried and scared.

 

Thank You

wmc

Welcome

It seems that it was T2 and went through treatment and now it is back and a T4. I'm glad she has a new doctor. If it is not in any lymph glands and has not spread anywhere, and they say it is T4, it must be very big. The T is tumor only and to get a 4 it has to be 4cm or larger I believe. That would be the size of a walnut. I understand your concern, as I would be as well. There have been several that did have it come back fairly fast, but most don't. I will keep you and your Mother in my prayers.

Bill

saranaz

wmc said:

Welcome

It seems that it was T2 and went through treatment and now it is back and a T4. I'm glad she has a new doctor. If it is not in any lymph glands and has not spread anywhere, and they say it is T4, it must be very big. The T is tumor only and to get a 4 it has to be 4cm or larger I believe. That would be the size of a walnut. I understand your concern, as I would be as well. There have been several that did have it come back fairly fast, but most don't. I will keep you and your Mother in my prayers.

Bill

Thank You

Thanks so much for the kind words. Well some day this part from back of the tongue might not be a recurrence but has stayed from the previous operation. But most say since it hasnt spread the prognosis isnt too bad. 

Thank you for praying for us . 

MrsBD

Welcome

It must be very difficult for you to try to support your mom when you are so far apart. The treatment for these cancers is tough and it takes months to recuperate. There are not many words to describe it, but I think you have chosen a good one! I did not have a set-back like your mom, but just wanted to offer my support and prayers for your family.

Kent Cass

saranaz

Sorry to hear of your Mom's story.Truly am. And I do truly wish that what I write further could be more to the positive.

I've said numerous times on this forum that when it "comes back" within a year, let alone far less than a year- that's just not the facts. The fact is that the C was not totally eradicated from the body with the first round of treatment; thus, the Drs. failed in treating, in your case, your Mom correctly and as he/she/or they should have. It does not "come back" that fast. It was never totally gotten rid of. Happens here in America, too, saranaz, and ticks me off to hear about Drs who let that happen with H&N. And after her 33 rad sessions and 2 Ops., another Operation does make sense as being the best option, though not a good one. C is a beast that just wants to relentlessly keep growing and growing, and for the 2nd Op to only get 90% of the tumor? That's 10% short of what should have been removed. The best C tx is to completely kill the beast with the first round of tx, no matter how harsh the side-effects may be. That's why I always say- the only way to error in C tx is to error on the side of the aggressive. Her chemo is only putting a halt to the replication of the C cells, and that tends to only be a temporary solution, as it is not killing all the C cells, like radiation does.  

Critical, saranaz, is that the C does not get into her esophagus- Esophageal is a difficult battle to win, unless caught very early. Only advice I can offer is Prayer, and perhaps to have your Mom start eating Apricot seeds, though not to overdo it. I eat 3 seeds/day, just to get Cyanide in my system- Cyanide in known to kill C cells, but not harm normal cells.

Hope things turn-out for the best, saranaz, and please keep us informed on how your Mom does.

kcass 

saranaz

Kent Cass said:

saranaz

Sorry to hear of your Mom's story.Truly am. And I do truly wish that what I write further could be more to the positive.

I've said numerous times on this forum that when it "comes back" within a year, let alone far less than a year- that's just not the facts. The fact is that the C was not totally eradicated from the body with the first round of treatment; thus, the Drs. failed in treating, in your case, your Mom correctly and as he/she/or they should have. It does not "come back" that fast. It was never totally gotten rid of. Happens here in America, too, saranaz, and ticks me off to hear about Drs who let that happen with H&N. And after her 33 rad sessions and 2 Ops., another Operation does make sense as being the best option, though not a good one. C is a beast that just wants to relentlessly keep growing and growing, and for the 2nd Op to only get 90% of the tumor? That's 10% short of what should have been removed. The best C tx is to completely kill the beast with the first round of tx, no matter how harsh the side-effects may be. That's why I always say- the only way to error in C tx is to error on the side of the aggressive. Her chemo is only putting a halt to the replication of the C cells, and that tends to only be a temporary solution, as it is not killing all the C cells, like radiation does.  

Critical, saranaz, is that the C does not get into her esophagus- Esophageal is a difficult battle to win, unless caught very early. Only advice I can offer is Prayer, and perhaps to have your Mom start eating Apricot seeds, though not to overdo it. I eat 3 seeds/day, just to get Cyanide in my system- Cyanide in known to kill C cells, but not harm normal cells.

Hope things turn-out for the best, saranaz, and please keep us informed on how your Mom does.

kcass 

Hi again

Thanks so much Everyone 

Kent:

So far, it has not spread anywhere, and her Dr. did say that he could not reach the tumor, safely, from the tongue. The reason they gave her Chemo is that her tongue could heal a little from the previous two surgeries and I think they gave her the Chemo so the aggressiveness would be reduced, at least. I think she will undergo another surgery and that way they can remove the whole thing. Many have said this is not a recurrence but a remaining  part of the previous tumor, which could be a little more positive.

I am hoping that they will operate on her soon but her Dr. says the tongue needs to heal a little before they can think about the next step.

Do you use pills or actual seeds, where can I get some? 

Please let me know  what you guys think.

saranaz

MrsBD said:

Welcome

It must be very difficult for you to try to support your mom when you are so far apart. The treatment for these cancers is tough and it takes months to recuperate. There are not many words to describe it, but I think you have chosen a good one! I did not have a set-back like your mom, but just wanted to offer my support and prayers for your family.

Thank you for the

Thank you for the encouragement, I think we have researched a lot. It is very hard. I cry everyday and blame myself for not being there. 

Hondo

saranaz said:

Hi again

Thanks so much Everyone 

Kent:

So far, it has not spread anywhere, and her Dr. did say that he could not reach the tumor, safely, from the tongue. The reason they gave her Chemo is that her tongue could heal a little from the previous two surgeries and I think they gave her the Chemo so the aggressiveness would be reduced, at least. I think she will undergo another surgery and that way they can remove the whole thing. Many have said this is not a recurrence but a remaining  part of the previous tumor, which could be a little more positive.

I am hoping that they will operate on her soon but her Dr. says the tongue needs to heal a little before they can think about the next step.

Do you use pills or actual seeds, where can I get some? 

Please let me know  what you guys think.

Pill

There are other ways if she doesn’t want any more chemo

 

Tim

Kent Cass

saranaz said:

Hi again

Thanks so much Everyone 

Kent:

So far, it has not spread anywhere, and her Dr. did say that he could not reach the tumor, safely, from the tongue. The reason they gave her Chemo is that her tongue could heal a little from the previous two surgeries and I think they gave her the Chemo so the aggressiveness would be reduced, at least. I think she will undergo another surgery and that way they can remove the whole thing. Many have said this is not a recurrence but a remaining  part of the previous tumor, which could be a little more positive.

I am hoping that they will operate on her soon but her Dr. says the tongue needs to heal a little before they can think about the next step.

Do you use pills or actual seeds, where can I get some? 

Please let me know  what you guys think.