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Tongue Cancer when Radiation is NOT an option... now what?!

Nichole0617
Posts: 5
Joined: Oct 2012

Hello All...

My mother was recently diagnosed with Cancer of the Tongue. It was surgically removed and The pathology came back with invasion to the lymph nodes and nerve. She had tonsil cancer with metastasis to the neck lymph nodes 7 years ago. She had radiation and was cancer free for 7 years. It came back on the tongue... and now radiation is NOT an option. Has any one had this? What are Chemo options? I heard Chemo is not effective for head and neck cancers... We have to depend on just surgery?! I had to ASK to be seen by chemo... we have an appointment next week. I want to go in armed with information... any help would be appreciated. Thanks

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

Head and Neck cancer...most of us here have had many rounds of chemo as well as the radiation. Most of us had Cisplatin, or others (Carboplatin, Erbetux, 5FU are all used for HNC)...

I'm glad you insisted on seeing an Oncologist...I think you'll get better news than where you went for the diagnosis...

p

PS...there are some Medical Centers where radiation may be an option, too. It depends on the radiation machine, where EXACTLY the cancer is located, etc. There are many people on here way more knowledgable than I....you'll hear from them.

ratface's picture
ratface
Posts: 1229
Joined: Aug 2009

You are going to have to do some research as P51 stated. How much was previously given and where and what type of machine was used. Perhaps brachythearapy is an option to look at????? Also robotic surgery via the Davinci Robot might be an option. There are quite a few here where that have received radiation twice, they will be along shortly I'm sure. Sorry about your Mom but hang in there a we bit longer with us.

Nichole0617
Posts: 5
Joined: Oct 2012

We are living in St Louis and have one of the best Cancer facilities in the country right here in our back yard (Siteman) ... The doctors we have seen have run the gambit on her. Her Radiation doctor actually went above and beyond to try and get radiation again. The problem with Radiation is once you get it, you can't get it again in the same place. Since her mouth had it 7 years ago, there is a bigger risk to vital tissue going necrotic. We saw 2 different docs and both said no go. One went as far as doing the H&N CT, plugging her info into a computer along with hr old, running a simulation and presenting her case to the tumor board... I'm confident and ok with their "No" ... I don't like it, but I understand it from a medical stand point (PS, I'm a nurse) It just frustrated me when *I* had to be the one to force the issue to see a Chemo doc. All this doc did, he just sat there and told us no and basically shrugged his shoulders... HELLO!!! Talk about ripping the bandaid off ... Anyways... he made it sound like Chemo may not even be an option. I don't know why it wouldn't be... ?! *sigh* thanks for your response.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Nicole0617,

From what I’ve learned the ENT, the Radiation Oncologist and the Hematology Oncologist don’t necessarily talk to each other much. I am not saying they are not brilliant at what they do. It is just that they make us (the patients) crazy sometimes.

Best,

Matt

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Nichole0617,

There are many chemo options mentioned by p51. Many drugs used in the treatment of H&N cancer are highly effective (at least they better be). There are also applications of radiation which are different than 7 years ago and may be viable now. There are examples on this forum that have had multiple applications of rads. Be extremely careful about what you read, it will scare away your hope and sensibility. We have nothing to gain from not being 100% honest in our opinions here, if you want the unvarnished truth, you’ve come to the right place.

Welcome and start typing.

Best,

Matt

Nichole0617
Posts: 5
Joined: Oct 2012

If you see my response to p51 above... yes, some places can be reradiated.. unfortunately Its not an option. He just made it sound like it may not be an option. We go talk to the Chemo doc on Monday. and I have a call into another one. Hey... I get 2nd opinions on my car, why not my mothers life. I don't get scared away by things I read... problem is, I work in the medical field. Its a career hazard. My husband is constantly reminding me, I see the worse end of things being in the ER. Thanks again!

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

First, for base of tongue cancer in 1998, then for cancer of the tonsillar fossa/soft palate which just completed in February this year. All treatments were done in St Louis. Details are in my bio. PM me if I can be of assistance

Pat

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I believe you were misinformed about chemo's efficacy for H&N cancers. but I'm no medical professional.
however, if you're looking for research leads before the appointment, here's one:

https://www.erbituxhcp.com/pages/squamous-cell-carcinoma-of-the-head-and-neck-scchn.aspx

"ERBITUX, in combination with platinum-based chemotherapy with 5-fluorouracil, is indicated for the initial treatment of patients with a certain type of head and neck cancer whose tumor has returned in the same location or spread to other parts of the body.

ERBITUX is also indicated for use alone to treat patients with a certain type of head and neck cancer whose tumor has returned in the same location or spread to other parts of the body and whose disease has progressed following platinum-based chemotherapy."

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

In fact it is the first FDA approved drug for SCCHN since the 1950's and the only monoclonal antibody to be approved. This article speaks to how SCCHN typically over expresses EGFR which is good for Erbitux and not so good for RT and traditional chemo. However a there are also other factors at work that make Erbitux ineffective in 45% of the cases so the hunt is on to find a drug to use in combination with Erbitux or develop an entirely new drug. In any event it looks like targeted theapy holds a lot of promise. Maybe some day there will actually be a drug that can cure SCCHN.

http://clincancerres.aacrjournals.org/content/early/2011/07/15/1078-0432.CCR-10-3338.full.pdf

Here is another, but older article. Pretty much says that for those of us that had Erbitux the outcome is a crap shoot since the effectiveness is limited by other factors that cannot or are not measured. Hope the radiation did it's job and the cells did not go beyond the local lymph nodes. It has been said that chemo and biologicals do not in and of themselves cure scchn and I guess that is true.

http://www.hindawi.com/journals/jo/2009/896407/

MarineE5
Posts: 743
Joined: Dec 2005

Nichole,

If my memory is correct, I think (Longtermsurvivor and Hondo) are at least 2 of the people I seem to remember reading that they have been radiated at least twice, there may be more. Hopefully, they will reply soon and give you a better answer.

My Radiation Oncologist told me that I could be radiated a second time if I needed it. This was at my 5 year mark from my treatments.

My Best to Both of You and Everyone Here

joannaw81
Posts: 101
Joined: Sep 2011

where margins negative after the surgary? that's important. Brachytherapy is another option besides second radiation. Good luck to you!

Nichole0617
Posts: 5
Joined: Oct 2012

Thanks for all the responses! When we went through this 7 years ago, I believe that was the response... The problem with her Radiation last time versus this time, the "path" the radiation took the first time will cross over the same path it would have to take this time.... It would cause too much damage to healthy tissue. We had 3 opinions on this... the last doctor going as far as running everything as he would if he were actually going to radiate. Her first cancer was in the Tonsils and left side of the neck. They only left under the right side of the jaw "untouched" for the lack of better words... When they radiated her the first time, they gave her the full doses and 7 weeks of them... so, no, I believe from a medical standpoint radiation is NOT an option... i don't like it but i get it. IF this new tumor comes back, THEN and only then will they consider Radiation again. Because THEN the benefits outweigh the risks. Right now it'll only put at risk for her tongue tissue going necrotic and destroying that tissue and loosing the whole tongue.

After the removal of her tumor, they did graft and reconstruct some of the tongue. They did test the tissues "left" ... which I am assuming are the margins. He said they all came back negative. But with that said... I LOVE her doctor, we've been with him for 7 years... He's a doctor, not God and one missed cell. Like I said, I "know" too much from working as an ER Trauma nurse, while its not a oncology nurse, I still know enough to be dangerous to myself. hah.

I just scheduled an appointment with a Chemo doc for Monday! Wish us luck!

Thank you again for all your answers. I sincerely appreciate it! It sucks being on "this side of the stretcher"...

Nichole

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I wish you luck when seeing the doctor on Monday. I am praying that this chemo oncologist has the best treatment options available for your mom.

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