did you choose the easy or the hard path?
Comments
-
Hal....so do most Dr.'sHal61 said:Hard road wherever you go
Hello Dre,
I've heard too many on hear who had recurrance after "clear margin" surgery of the tongue to trust the procedure as the only treatment. Cancer seems to favor the mucous areas for recurrance, though it can travel.
Like many here, I didn't get choices at first, well sort of. My radiation onc said there was a good chance we could get a cure with chemo and radiation alone. I was SCC, base of tongue, stage 3. So I skipped the partial neck dissection, taking the "easy" path--ha. Well, after six months I still lit up a bit. My rad onc was still convinced it could well be vestigial scar tissue and disruption causing the borderline radiance, but by then both my med onc and ENT were pushing for the partial neck dissection. So I chose the hard path because it appeared it was indicated to give me the best chances.
Had the neck dissection. You generally hear about the same stats for people who do the dissection before or after the chemo/radiation. After used to be the preferred method, and was used as a cleanup, but before is good becausse it gets rid of the major cancer storage units right off the bat.
After dissection, it was discovered that three of the 16 lymph nodes still showed traces. There are what are called shadow or ghost cancer cells that are in a moribund state. The docs didn't seem to differintiate for me concerning that. The three were located directly next to the originally cancerous nodes--which were dead--and removed nodes further out showed no trace.
My med once said lets do more chemo, to be sure. He also said situations like mine weren't that common, and that the statistics on those who went for more radiation at that point were no different than those who didn't. There was nothing in the literature to suggest that more platinum in my system--it would be carboplatin--would be of any benefit.
He was still for more chemo.
At that time I was pretty sick still. Had tinnitus--which I still have permanently probably--from the Cisplatin, and the ever-popular permanent partial hearing loss. My neck and shoulder hurt, and my ear stung all day like it was in the snow.
Given all that I took the easy path. Carboplatin can leave you with neuropathy of the extremeties. With my luck I would have been left numb from the neck down, I was already numb from the neck up. I didn't opt for another round.
There are those hear who would have chosen otherwise, but with no clinical or statistical advantage seen, I chose no mas. Because it was the choice I made, it was the right choice for me. If I get a recurrance in the future, I won't give myself any grief, it happens or not, either way.
So I've been through no brainers, hard, and easy choices. Your case is more obvious, right now you need the hard path.
best, Hal
give a choice between having the surgery first, and then the rads and chemo and vice versa? Does doing the surgery first make anything easier (thinking of already have been microwaved & chemo'd, and then having surgery on top of that as opposed to surgery/healing/then rads and chemo). Do these "choices" only come up depending on where the cancer is?
p0 -
Hi Phranniephrannie51 said:Hal....so do most Dr.'s
give a choice between having the surgery first, and then the rads and chemo and vice versa? Does doing the surgery first make anything easier (thinking of already have been microwaved & chemo'd, and then having surgery on top of that as opposed to surgery/healing/then rads and chemo). Do these "choices" only come up depending on where the cancer is?
p
After I got my nasty diagnosis locally, I headed down to Stanford Cancer Center to get a second opinion. Stanford was of the opinion that any surgery at all would have been completely unnecessary for me. They were certain that the chemo and radiation would have resolved even the 3-cm lymph node. They also stated that if any cancer cells remained, which they doubted, THEN they would do a follow up surgery. But, they were pretty firm that the surgeries that my local ENT doctor had done weren't necessary.
So, there probably isn't any particular standard. Each doctor is going to have their own opinion and their own approach.
Also, while I traveled to Stanford for a second opinion (roughly a three hour drive each way for me), Stanford was also pretty emphatic that the treatment for what I had was not rocket science, and that my local 'regional' cancer center was more than capable of administering the Cisplatin chemo and 8 weeks of radiation.
My advice; seek a second opinion from a large cancer center that specializes in head/neck issues. Based on your diagnosis, you may not need them.
Deb0 -
Docs gone wildphrannie51 said:Hal....so do most Dr.'s
give a choice between having the surgery first, and then the rads and chemo and vice versa? Does doing the surgery first make anything easier (thinking of already have been microwaved & chemo'd, and then having surgery on top of that as opposed to surgery/healing/then rads and chemo). Do these "choices" only come up depending on where the cancer is?
p
hi Phrannie, like Deb says, they vary from specialist to specialist and from doc to doc.
My ENT and med onc wanted to do surgery first, but neither felt real strong either way. I know because I asked them.
Like Deb, my rad onc felt we could get it with just chemo/rads. After three months my scan lit up a bit, but both my rad onc, and my medical onc felt that three months was too early to make a determination. After 6 months and still a radiance number that was just above the legal limit--I think it was like 3.5, and 3.3 were considered borderline, those might not be the numbers, but like that.
Then my medical guy sided with the ENT surgeon, and it's good I had the dissection give three lymph nodes were suspect or carriers.
To answer your question: these choices only come up when there is a good chance the cancer has or will metastasize to the lymph nodes. Mine was BOT, and that's the regimen for BOT. Other H&N I'm not so sure.
I was six months post treatment when I did my surgery, so it wasn't like one on top of another. If you do the dissection first they have to give you time to heal, and the argument there is that the "healing" time offers the primary cancer a slim window to slip through and spread.
You'll play "stump the patient" a lot on the way to your cure, but you'll get there.
best, Hal0 -
Thanks Deb and Hal....D Lewis said:Hi Phrannie
After I got my nasty diagnosis locally, I headed down to Stanford Cancer Center to get a second opinion. Stanford was of the opinion that any surgery at all would have been completely unnecessary for me. They were certain that the chemo and radiation would have resolved even the 3-cm lymph node. They also stated that if any cancer cells remained, which they doubted, THEN they would do a follow up surgery. But, they were pretty firm that the surgeries that my local ENT doctor had done weren't necessary.
So, there probably isn't any particular standard. Each doctor is going to have their own opinion and their own approach.
Also, while I traveled to Stanford for a second opinion (roughly a three hour drive each way for me), Stanford was also pretty emphatic that the treatment for what I had was not rocket science, and that my local 'regional' cancer center was more than capable of administering the Cisplatin chemo and 8 weeks of radiation.
My advice; seek a second opinion from a large cancer center that specializes in head/neck issues. Based on your diagnosis, you may not need them.
Deb
Deb, Stanford is one of the cancer centers that my insurance will allow me to go and get a $5000 travel and lodging allowance...tho Seattle's Cancer Care Alliance is ever so much closer (I can go there, too...but no allowance). Until I find out tomorrow exactly where and what...even choosing a Cancer Center is up in the air. It's good to know tho, that the long haul stuff....rads and chemo...can be done at home...I really wouldn't want to be somewhere else for all that.
Hal...you cracked me up...instances of "stump the patient"....well, no kidding....I'm a layman, what the hell do I know...LOL.
p0 -
Hard ChoiceHal61 said:Docs gone wild
hi Phrannie, like Deb says, they vary from specialist to specialist and from doc to doc.
My ENT and med onc wanted to do surgery first, but neither felt real strong either way. I know because I asked them.
Like Deb, my rad onc felt we could get it with just chemo/rads. After three months my scan lit up a bit, but both my rad onc, and my medical onc felt that three months was too early to make a determination. After 6 months and still a radiance number that was just above the legal limit--I think it was like 3.5, and 3.3 were considered borderline, those might not be the numbers, but like that.
Then my medical guy sided with the ENT surgeon, and it's good I had the dissection give three lymph nodes were suspect or carriers.
To answer your question: these choices only come up when there is a good chance the cancer has or will metastasize to the lymph nodes. Mine was BOT, and that's the regimen for BOT. Other H&N I'm not so sure.
I was six months post treatment when I did my surgery, so it wasn't like one on top of another. If you do the dissection first they have to give you time to heal, and the argument there is that the "healing" time offers the primary cancer a slim window to slip through and spread.
You'll play "stump the patient" a lot on the way to your cure, but you'll get there.
best, Hal
Dre, good question. I too was faced with different decisions to make. My cancer is/was not SCC, but Mucoepidermoid Carcinoma. (MEC) A tumor was found on the base of my tongue after seeing an ENT for a sinus infection. Had it biopsied and removed. Clear margins for the tumor but had a swollen lymph node on my right side. PET showed positive on both sites. T2N2M0. My type of C is very rare and had never before been seen on the tongue. It usually invades the salivary gland.
After the first operation I had a radical neck dissection which has caused considerable pain in my shoulder. But both my surgeon and RT Onc told me I had a 75% chance of no recurrence and radiation therapy is up to me. In my mind, I had a 25% chance of it coming back. And if it did it would be in the major parotid gland.
So I elected to have radiation. I so much wanted to skip that one knowing how much damage it would do and how it would change the rest of my life. Mostly the teeth.
Right now I have 7 treatments left out of 30 and don't regret the decision. If I hadn't chosen the hard road I would have worried about it coming back every day. Yes I am dealing with the normal symptoms of RT, but hope to be back to a somewhat normal state months from now. At least I'll save on razor blades! Not much of a beard left.
When it comes to the big C, I believe we all should take the hard road just to be sure. Even doing all we can, it's no guarantee it won't come back. But at least I won't regret me doing all that I could to prevent it.
Good Luck and much health,
Tommy0 -
HPV+Skiffin16 said:Biopsy
Testing the tissue from the biopsy, or FNA -fine needle aspiration.....
For me that was to test the tissue from the tonsils that came out first thing. A few weeks after I had already started the Tx, the results did come back HPV+..but the Tx was still going to be the same, so it was only as a reference.
Women tend to be tested annually during their exams. For men there isn't really (that I'm aware of) anything to test for if you aren't having some kind of symptoms.
JG
Just an FYI, women are not tested for HPV. We get a Pap smear every year which checks for irregular cells. If it comes back questionable they may send it for testing. If it comes back normal they do not test for HPV. My husband's tumor is HPV+. We have been together for 25 years. I have had a clean Pap smear every year. I asked to be tested this year and they said insurance might not pay for it. I will still insist on testing. I just want to know. Not that there is anything I can do about it.
Jenn0 -
Everything AND the Kitchen Sink
I wanted ALL the treatments available. Surgery immediately, followed by massive doses of chemo and radiation twice a day. Well, after seeing my films, surgeons let me know that surgery up front was not an option they'd recommend. I had stage four base of tongue cancer, T2N2M0, two lymph nodes affected. After the tonsillectomy,the doctors I went with recommended chemo-radiation - whether or not to do "heavy" induction chemo was up to me. We'd try to avoid the neck dissection. I elected to go for it - three months of induction chemo followed by chemo radiation. Nine months later, I had to have the dissection, since one of my lymph nodes did not respond fully to treatment.
Did the induction chemo make me feel bad? Yep. Two years after radiation, do I have lasting effects from the radiation, chemo and dissection? Yep (mild pain/numbness, range of motion issues, teeth problems, mild neuropathy, saliva issues and mild eating problems). Considering the issues, would I have gone with a kinder, gentler treatment program? Nope. I've had clean scans for a year now - if I'd have known then what I know now, I would still want to go with the more aggressive options for treatment.
Do well.0 -
Specifics...Jennjallen67 said:HPV+
Just an FYI, women are not tested for HPV. We get a Pap smear every year which checks for irregular cells. If it comes back questionable they may send it for testing. If it comes back normal they do not test for HPV. My husband's tumor is HPV+. We have been together for 25 years. I have had a clean Pap smear every year. I asked to be tested this year and they said insurance might not pay for it. I will still insist on testing. I just want to know. Not that there is anything I can do about it.
Jenn
Hi Jenn,
As of old yes, but at the facility my wife goes to, HPV testing is done in conjunction with annual exams and PAP smear testing.
But yes, I should have clarified that the capability to test women is there, whether a facility does it automatically is a different issue. I would hope the trend has started to automatically test, as HPV has risen so high within the general population over the last few years.
Men's testing, not so much as we don't have routine exams where they actually take cell samples.
As for blood, I have no idea if there are any kind of markers or testing for HPV purely from blood samples.
JG0 -
HPV +Skiffin16 said:Biopsy
Testing the tissue from the biopsy, or FNA -fine needle aspiration.....
For me that was to test the tissue from the tonsils that came out first thing. A few weeks after I had already started the Tx, the results did come back HPV+..but the Tx was still going to be the same, so it was only as a reference.
Women tend to be tested annually during their exams. For men there isn't really (that I'm aware of) anything to test for if you aren't having some kind of symptoms.
JG
My doc said HPV+ cancer could show up in only one place. All my PAP tests (and they did test for HPV as well) have been negative. So, I was very surprised when the test showed positive for the tonsil.0 -
Dre,
If you don't have the most aggressive treatment, and you suffer a recurrence, and God forbid, distant mets, will you have regrets?
Yes, chemo might, and radiation will cause some long term side effects, some of them not appearing until later too, but if survival is of the utmost importance, the hard path is really the only path that gives you the best guarantee of that.
There are some that have chosen the easy path who may live on disease free, and others who have had fatal consequences. The trouble is, what happened to them cannot adequately predict and has no relationship to what will happen to you.
I feel for you because chemo and radiation has left me with some residual symptoms, and I'm left wondering what else will radiation do to me as time progresses. However, I will cross those bridges as they come. The biggest gift is the ability to wake up and experience that time, and knowing I did everything to make that happen.
It's a very tough decision. Whatever you choose, I wish you the best.
Roger0 -
Not Suresukichu61832 said:HPV +
My doc said HPV+ cancer could show up in only one place. All my PAP tests (and they did test for HPV as well) have been negative. So, I was very surprised when the test showed positive for the tonsil.
Not sure about your MD's comment...
HPV can show up in many places and as a different type..16 and 18 are most common in both cervical and oral cancer.
It's actually not so uncommon these days it seems, especially if you've never been a big alcohol or tobacco user.
JG0 -
Cheshire cat
Thank you all for contributing to this thread!
I got things moving to get tested for HPV. I don't have the results yet, though. As others here, I had been told that HPV is connected mainly to cancers of the back of the mouth/throat and not so much with the oral tongue. And the literature is divided on the issue.
The good news is that today I finally found a medical oncologist whom I trust. Happiest day in a few weeks! She too suggested to do chemo. And I'll do it. I think I just didn't like the first doctor who proposed the treatment. Now I have someone I will trust when I feel miserable 5 weeks into treatment.
Cisplatin seems to be the most likely candidate. I was told that instead of having the standard three rounds of 100mg/m2 every three weeks, I could do weekly rounds of 40mg/m2 to reduce the severity of the side effects. Has anyone tried that?
The only doubt left is if I want to do radiations to tongue+neck or tongue only. The probability of recurrence in the neck seems to be very low. And by low I mean that the benefits are pretty much offset by the risk of getting secondary cancers 10 years down the road as an effect of the radiations.
At this point I'm not even sure what the easy and the hard roads are..
`Then it doesn't matter which way you go,' said the Cat.
`so long as I get SOMEWHERE,' Alice added as an explanation.
`Oh, you're sure to do that,' said the Cat, `if you only walk long enough.'
For now, big hugs to all of you! ..your usernames and profile pictures pop up in my mind during my days..
Dre.0 -
You definatelyooo said:Cheshire cat
Thank you all for contributing to this thread!
I got things moving to get tested for HPV. I don't have the results yet, though. As others here, I had been told that HPV is connected mainly to cancers of the back of the mouth/throat and not so much with the oral tongue. And the literature is divided on the issue.
The good news is that today I finally found a medical oncologist whom I trust. Happiest day in a few weeks! She too suggested to do chemo. And I'll do it. I think I just didn't like the first doctor who proposed the treatment. Now I have someone I will trust when I feel miserable 5 weeks into treatment.
Cisplatin seems to be the most likely candidate. I was told that instead of having the standard three rounds of 100mg/m2 every three weeks, I could do weekly rounds of 40mg/m2 to reduce the severity of the side effects. Has anyone tried that?
The only doubt left is if I want to do radiations to tongue+neck or tongue only. The probability of recurrence in the neck seems to be very low. And by low I mean that the benefits are pretty much offset by the risk of getting secondary cancers 10 years down the road as an effect of the radiations.
At this point I'm not even sure what the easy and the hard roads are..
`Then it doesn't matter which way you go,' said the Cat.
`so long as I get SOMEWHERE,' Alice added as an explanation.
`Oh, you're sure to do that,' said the Cat, `if you only walk long enough.'
For now, big hugs to all of you! ..your usernames and profile pictures pop up in my mind during my days..
Dre.
have a great attitude.This journey is not always easy, but it's doable....between you and the doc you trust you will take the right path as it was designed for you...
"Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference"...Robert Frost
Blessings and light on your journey Dre.
Linda0 -
WONDERFULooo said:Cheshire cat
Thank you all for contributing to this thread!
I got things moving to get tested for HPV. I don't have the results yet, though. As others here, I had been told that HPV is connected mainly to cancers of the back of the mouth/throat and not so much with the oral tongue. And the literature is divided on the issue.
The good news is that today I finally found a medical oncologist whom I trust. Happiest day in a few weeks! She too suggested to do chemo. And I'll do it. I think I just didn't like the first doctor who proposed the treatment. Now I have someone I will trust when I feel miserable 5 weeks into treatment.
Cisplatin seems to be the most likely candidate. I was told that instead of having the standard three rounds of 100mg/m2 every three weeks, I could do weekly rounds of 40mg/m2 to reduce the severity of the side effects. Has anyone tried that?
The only doubt left is if I want to do radiations to tongue+neck or tongue only. The probability of recurrence in the neck seems to be very low. And by low I mean that the benefits are pretty much offset by the risk of getting secondary cancers 10 years down the road as an effect of the radiations.
At this point I'm not even sure what the easy and the hard roads are..
`Then it doesn't matter which way you go,' said the Cat.
`so long as I get SOMEWHERE,' Alice added as an explanation.
`Oh, you're sure to do that,' said the Cat, `if you only walk long enough.'
For now, big hugs to all of you! ..your usernames and profile pictures pop up in my mind during my days..
Dre.
A doc you trust is HUGE - glad you found one. After my induction chemo, I had weekly rounds of carboplatin during my radiation round. I believe the smaller weekly doses were easier on me than the three larger doses would have been. On the other hand, maybe some here would feel the three larger doses would do more damage to the renegade cells than the kinder, gentler seven smaller doses - I do not know.0 -
You gave me a chuckle with your referenceooo said:Cheshire cat
Thank you all for contributing to this thread!
I got things moving to get tested for HPV. I don't have the results yet, though. As others here, I had been told that HPV is connected mainly to cancers of the back of the mouth/throat and not so much with the oral tongue. And the literature is divided on the issue.
The good news is that today I finally found a medical oncologist whom I trust. Happiest day in a few weeks! She too suggested to do chemo. And I'll do it. I think I just didn't like the first doctor who proposed the treatment. Now I have someone I will trust when I feel miserable 5 weeks into treatment.
Cisplatin seems to be the most likely candidate. I was told that instead of having the standard three rounds of 100mg/m2 every three weeks, I could do weekly rounds of 40mg/m2 to reduce the severity of the side effects. Has anyone tried that?
The only doubt left is if I want to do radiations to tongue+neck or tongue only. The probability of recurrence in the neck seems to be very low. And by low I mean that the benefits are pretty much offset by the risk of getting secondary cancers 10 years down the road as an effect of the radiations.
At this point I'm not even sure what the easy and the hard roads are..
`Then it doesn't matter which way you go,' said the Cat.
`so long as I get SOMEWHERE,' Alice added as an explanation.
`Oh, you're sure to do that,' said the Cat, `if you only walk long enough.'
For now, big hugs to all of you! ..your usernames and profile pictures pop up in my mind during my days..
Dre.
to Alice (one of my very favorite stories!!)...I hope you stay on this board during treatment...since we're beginning this journey at the same time, there's comfort knowing there's someone in the tunnel with me. I'm way less brave than you are, me thinks.
I have an appointment with the oncologist next Friday...I'm so glad you brought up the different doses for chemo...it's something I can ask about, for myself...
p0 -
which comes first?phrannie51 said:Hal....so do most Dr.'s
give a choice between having the surgery first, and then the rads and chemo and vice versa? Does doing the surgery first make anything easier (thinking of already have been microwaved & chemo'd, and then having surgery on top of that as opposed to surgery/healing/then rads and chemo). Do these "choices" only come up depending on where the cancer is?
p
I had stage 4 tongue with three lymph nodes. The head oncologist wanted to do surgery then send me home for 6 weeks and go back for 35 rads and 7 chemos. I listened to my gut and turned down the surgery and went for radiation and chemo. Like you Phrannie 51 I am no spring chicken. I was 60 at the time. Long history of smoking (had quit the year before) and also was a heavy drinker in my 30s and 40's. Social drinker later on. They said mine was for sure smoking related but also had HPV in my cancer. A mixed blessing. the HPV took my survival rate up to 80%.
I can't say it was a day at the beach but I had alot going for me. I was sent by my ENT to where they treat head and neck cancer every day and not just once in a while. So they really knew their **** down at the James in Columbus. I lived with friends who took me back and forth each day for my treatments. I never had to worry about traveling. Friends watched my house, took my dog while I was gone and others cared for my cats. I was on family emergency leave so my job was held. I paid ahead on all my bills. I called all utilities, my bank where my loan was...insurance company. I pleaded my case to all to get reductions or whatever to help with my situation. You will be amazed how much help you can get; you just have to ask.
As a single woman with no siblings or parents I learned to get tough and to reach out. This is no disease for sissies. You have to take charge. Of your treatment and your life.
I am almost 16 months out from treatment and I feel absolutely wonderful. I eat everything now. My taste buds are all back. I feel strong and healthy.
Am I one of the lucky ones? You bet I am. I hurt for those who lose their battle and there are plenty of them. In my small town of less than 20,000 there have been 9 cases of head and neck cancer alone in the past 4 months. Two of those people have reached out to me and I hope I can be of some help.
Sorry to go on and on....I just love this board and have to say there are some thath have given me alot of good things to help. I wish I had found it when I was going thru my treatments. To those of you just starting; remember to listen to your body and ask for that 2nd of 3rd opinion if need be. We only have one life;
peace
nancy0 -
chemo dosesphrannie51 said:You gave me a chuckle with your reference
to Alice (one of my very favorite stories!!)...I hope you stay on this board during treatment...since we're beginning this journey at the same time, there's comfort knowing there's someone in the tunnel with me. I'm way less brave than you are, me thinks.
I have an appointment with the oncologist next Friday...I'm so glad you brought up the different doses for chemo...it's something I can ask about, for myself...
p
I am a small woman, just 5 foot and my chemo doc, Dr. Neki, felt that 6 doses as opposed to 3 would be easier for me to tolerate. Other than one bout of throwing up as I didn't start the anti nausea drugs in time (learned my lesson there), I never got sick from chemo. At the end they added an extra dose the last day of my treatments....I never lost my hair either....just the bottom of the back and that was from where the radiation exit was!0 -
Not easy
no matter what you do. The perineural part is what I also had. I wanted it all gone. Only offered rads. Cooked pretty well. Less than a year and I had mets. Neck dissection and rads again. Cancer is not welcome here anymore! I hope that you find doctors that you are comfortable with. BTW, this is a wonderful site, help, support and encouragement and friendship at the click of the mouse.0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards