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What would you do?

mwellsg
Posts: 66
Joined: Jan 2011

Talked to the oncologist for the first time.

I pressed the doc on killing the cancer and keeping it away. He said killing it was pretty sure. Said i'm a dream parient because I'm in shape, no other illness, good nutrition, ... But he said this bugger is "level 3", in his words "potent".

So I asked him if low dose chemo and 30 radiation treatments was the only course. He said we could start with high dose strong chemo, weaken the cancer and shrink it as much as possible and then follow with low dose chemo and radiation. Says he thinks I can take it and it will have a better chance of not only killing what I have now, but stopping it from coming back.

What do you guys think?

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

'Hit me with your best shot!"

mwellsg
Posts: 66
Joined: Jan 2011

:-)

CajunEagle
Posts: 353
Joined: Oct 2009

Honestly, being that I was Stage Four Left Tonsil, and the tumor wrapped around my Carotid Artery with no hope of surgery due to the many complications that could possibly arise with the surgery.....I'd tell them again to give it everything you got, plus the kitchen sink. If these Docs tell me that they think that I can take it, then I sure am not gonna tell them that they are crazy. The sounds of "potent" and "50/50 chance of surviving" meant that they were trying to save my life, and I had to make sure that I was going to save myself and do my part. They laid it on me with 6 rounds of high dosage Cisplatin and 36 straight days of IMRT. If I had to, would I do it all over again ?? There is no doubt that I would, cause I can still kiss my wife good night.

Larry

mwellsg
Posts: 66
Joined: Jan 2011

And I am happy for you it worked. I think I should take all they have to dish out too. Hope I'm ready. I think I am

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi, I think I would get data or stats that would support the use of high-dose to start. If the survival rate is the same, I would opt for the regular treatment. If there is a benefit, then use the high dose start. The high dose start may suggest a higher rate or severity of treatment symptoms, and you don't want that if the benefit is not there.

best, Hal

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I don't know what that means. Do you know if your cancer is HPV+? You may have told us before, but I am more of a dabbler these days than an avid reader.
Are you squamous cell? Stage? If I remember correctly you are BOT (base of tongue), right?
Kim

mwellsg
Posts: 66
Joined: Jan 2011

In think your asking me. Yes, I am T2N2cM0 squamous, base of tongue. Overall because of the N2c, both side lymph nodes it's stage IVa

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Same as I had and similar diagnosis, only one tumor and both the tonsils and tumor were on the same side for me though.

Nine weeks (three cycles) of heavy chemo (cisplatin, taxotere an 5FU), then seven weeks lower dose chemo weekly carboplatin, and 35 daily rads.

For me he surgically removed the tonsils first thing. After the third cycle of the heavy chemo, the tumor was completely gone. But we still opted for their recommendation and plan of the additional seven weeks of concurrent.

I'm also now 56, good health, and no meds before or currently...18+ months post treatment.

Best,
John

mwellsg
Posts: 66
Joined: Jan 2011

Thanks.

mwellsg
Posts: 66
Joined: Jan 2011

Thanks.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Sounds like a good plan, if he can see the tumor sinking then he can adjust the treatment and help with the side affects later.

Take care my friend
Hondo

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

As with most big questions in life, you need to ask what is the cost of failure? Quite high here. This is no time to take an easy path. We all know of too many times it came back after it appeared to be gone. I hope you play mean, tough, and thorough with this cancer.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I, too had stage four base of tongue cancer. Induction chemo for three rounds (three "heavy hitters"), followed by weekly carboplatin with radiation for seven weeks (well, six - had one chemo canceled for failing blood test). What my doc said was "I think your body would be able to tolerate it". Now they say I tolerated treatment fantastically. I did end up having to have a modified radical neck dissection nine months after rads ended, though (started with primary tumor and two bad lympn nodes - one of the nodes survived the chemo and rads, and started to grow and become more active again). If I could go back a little in time and change my treatment, and skip the induction chemo, I would not - I'd do both the induction chemo and chemo rads. Course, there are folks here, I'm sure, who would say that they would not do the induction chemo. I think a lady here had a doc tell her it would not improve her odds. I know it's rough, constantly second-guessing yourself, and trying to come up with the best possible game plan. Do well.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I asked for clarification on your diagnosis because what I learned about treatment through Mark's experience was based on Stage IV SCC HPV tonsil, mets to the muscle of his neck. I hesitate to put in my two cents if Mark's situation is an apple and you are an orange. Makes sense to get the feedback from other oranges like Skiffin. (Oranges to Oranges).
What I know is we made a decision to throw the book at Mark's cancer. There was some discussion after surgery to just do radiation and not chemo. We ultimately decided to do it all. And I will tell you, post treatment, coming up on his 6 month PET, when anxiety spikes, the one thing I can hang onto is: we threw the book. We don't say, "what if". We know we did everything we could. No second guessing.
The treatment you are being offered spares surgery, which seems to be a big deal when the primary is the base of tongue. John (Skiffin) is a good example of the process. And if I remember correctly he did not have a PEG and was able to slurp something down all through treatment.
I say, THROW the BOOK, right in there with the kitchen sink, and spare yourself any second guessing, like Pam said, down the road.
Kim

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Yes Kim, you are correct, no PEG and I could get plenty (or as much as I needed and could tolerate) of Ensure, water, and jarred sliced peaches (mainly to keep the throat swallow muscles exercised).

Mine was right tonsil and a tumor on that same side. It's rough, like all have mentioned, but definitely doable. I was more lucky than some, and it wasn't really something that I dwelled on. I really just adapted, had to, what else are you gonna do...not the alternative for sure.

You can gripe, moan, complain, feel sorry for yourself, whatever...it doesn't change anything. You just have to suck it up and deal with it.

LOL, reminds me of being in the Marine Corps an the current commercial, "an that's why Yellow makes me sad".....just suck it up cup cake...

LOL, OK...now that I got off track....hit it hard, go for the kill shot from the start and don't look back...that was my attitude, (and several others here as well).

Best,
John

lawchk's picture
lawchk
Posts: 12
Joined: Apr 2010

There is a lot that going into deciding how aggressive you want to treat your cancer, and I've learned that some of it depends on where you are in life & how this is going to affect you in the future. I understand one's desire to be rid of the cancer forever & have it never come back...I've been there. But doing the most aggressive treatment may not be the best thing for you. I would find out what it best for you considering the removal success, recurrence rates & the damage that your body will suffer with the varying levels of chemo/radiation.

I was diagnosed at 26 with a very rare cancer called esthesioneuroblastoma (cancer of the smelling nerves). At the time (& now as well), I was incredibly active, ate healthy, didn't smoke, & didn't have any other illness. The docs said I was a prime candidate as well. The docs explored all of my options (chemo, radiation, surgery). Treatment in the past consisted of a full craniotomy followed by extensive chemo & radiation.

Well, over the last 10 years, there has been so much positive research emerging with removing these tumors through the nose and taking large enough margins to decrease the need for chemo/rad. My docs decided to do surgery through the nose which would speed up recovery from months to weeks. It took the docs 13 hours to remove the tumor (largest of its size ever removed entirely thru the nose), but I was out of ICU in 12 hours, out of the hospital in 4 days & took the TX bar exam 1 week later! But trust me, after the hospital stay I was like "whatever you have to do to make sure this sucker never comes back...do it!"

However after surgery, I met with the oncologist who said that while the decision was up to me, if I were his wife, he would tell me not to get chemo or radiation. Apparently, Baylor has a "tumor board" comprised of multiple docs, surgeons, oncologists, & docs who read charts who cases involving tumors. They discussed mine and took into account EVERY factor I could have imagined...my age, the surgical sucess, good margins, recovery, hair loss, that I wanted to have kids, that it would drive me nuts to not be able to do anything for a year during chemo/rad treatment & the fact that I was in the middle of taking the TX bar exam and opening my law practice. They considered all of this & decided that it was best NOT to do any chemo/radiation. They said the ENT & brain surgeons were able to remove the whole turmo & that adding chemo or radiation would decrease the likelihood of recurrence/metastasizing by such a small amount, that it wasn't worth putting my body through such a damaging process. They said it would do more harm than good. And since I have 2-3 MRIs a year, if it ever comes back, then they can treat with surgery & chemo/rad, but it wouldn't need much as the tumor would be much smaller.

I still get a little knot in my stomach whenever I have to wait for my MRI results, but you know what, from what I can tell, even those that had my cancer & chemo & rad, still get that same knot. Also, I have one heck of a year to look back on. Next week, I will be 1 year cancer free,

Best of luck in whatever you choose!

Lindsey
www.enbfacts.com

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Glad to hear of your success, Lindsey, and I welcome you here.

Had not heard of your C, and it does sound rare. With most of us, the C isn't discovered until it is somewhat majorly in the lymph system, and we don't have the option of only getting a tumor removed. My Nasopharyngeal showed when two tumors developed in the left side of my neck, for instance. I even asked my ENT if just getting C-ridden lymphs removed wouldn't be the best route, and he said it wasn't. Whereas you had a definite Primary tumor, and apparently a lot of the C was confined to it, most of us have it in our lymph system, and that's why the C&R comes into play.

I do hope you'll stick around here. A number of Nasopharyngeals have joined the original crew of Hawvet and Hondo, and if there's some esthesioneuroblastoma patients out there looking for help and advice- it's a very good idea for you to be here with us. Again, welcome, and it is great to hear of your success.

kcass

rossconn05
Posts: 1
Joined: Feb 2011

Lindsey,

In September of 2004, my youngest daughter Gina was diagnosed with Stage 3 Esthesioneuroblastoma. The large malignant tumor was located behind her sinus's and spread to the lymph-nodes in her neck. She was only 13 years old at the time.

The doctors at Pittsburgh Children's Hospital did a very thorough assessment of her condition and because my daughter was so young we decided that an 18 hour surgery was going to be last resort. The Director of Neuro-Oncology took my daughter as her patient and decided to hit her aggressively with Chemo. She underwent Chemo every other week from October 2004 through January 2005. They were able to shrink the tumor and the lymph-nodes in her neck. The next stage of her treatment was done at Massachusetts General Hospital, Francis H. Burr Proton Therapy Center, in which she was evaluated and accepted as a patient for the Proton Stereotactic Radiotherapy (PSRT.). She underwent 35 treatments to the main tumor and another 22 treatments to her lymph-nodes in her neck. The treatments started on January 24, 2005 and ended on March 16th, 2005 in which she was declared in cancer free.

She is now 20 years old, in her second year of college, made the National Honor Society and has taken many advanced college courses. March 16th of this year we will celebrate that she has been 6 years cancer free.

Like you every time she has her CT and MRI's we sit on pins and needles.

God Bless

Ross Buscemi

Redbow's picture
Redbow
Posts: 4
Joined: Dec 2012

Hey Lindsey,

Susan in Texas, here.  Was just wondering, if, two years later, you are still happy w/ your choice of not undergoing radiation, etc.?  My tumor (Esthesioneuroblastoma, Stage "A", lowgrade tumor was removed w/ surgical endoscope w/ wide margins as well.  The radiation oncologist my ENT sent me to, wanted to radiate me even before I got my PETScan back!  The PETScan was neg. for metasasis and my ENT put the brakes on that.  He said the treatment can sometimes be worse than the cancer.

Sooo...was just wondering how things have gone for you and if you are still cancer free?  I've read so much about it having a high rate of return...

Would appreciate any thoughts on this!

Susan

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