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prognosis stage IV

jackflash22's picture
jackflash22
Posts: 241
Joined: Aug 2013

Did anyone get a prognosis for stage IV cancer, I think thats what my stage may be. I didn't get any info on the stages or the prognosis. Reading the forums it seems to me about 2/3 of cancers come back again. Thats worrying although many of you came through a second cancer .  I read that once the cancer reaches the lymph nodes the chances go down. I have made an appointment to talk to the specialist, to ask questions. I shall ask what stage was my cancer, what are my chances, did they get it all out and is my radiationtherapy just a precautionary or did they find more. I didn't ask many questions because before I left the hospital they said the op was a success I didn't expect the rad. I now worry about my metal fillings, I always keep my 6 month checkup since I was a kid and have nearly all my back teeth filled with 'mercury, I also have one gold crown. Front teeth OK. Gums OK no gum desease, just had them checked, cleaned and polished by hygienist. I haven't an appt with the hospital dentist till after my rad. I started off this journey full of enthusiasm that I'd have an op and thats it......

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I've been following your treatment plan along the way, and kind of surprised the approach they have taken with you.

From what I gather and what you have posted, I would have presumed you at either STGIII or IV depending on the location of your tumors or lypmhnodes...same side more than likely III, opposite side, more than likely IV.

That being said, most at STGIII or IV have had a combination of all three modes of battle...surgery, chemo and radiation.

Your team seems to have started in reverse order, surgery first, then more signs of cancer, radiation next..., and I prwsume chemo will be next.

Have you ever considered a second opinion on treatment, or do you even have a choice where you are...?

Also, some of the things you mention, I'm not sure where you are finding your info...

You have stated IMRT has the worse side effects, I've never heard that before..., might be true, not sure, but it also is highly successful in treating our type of cancer.

You mention that 2/3 of the cancer comes back.., again, I've never heard that, and being on this board for nearly five years, I don't see that being the case..., more like in the range of 10% or less seem to have a recurrence or secondary cancer.

Again with teeth..., even though I know this seems to be a hot topic, I think overall, less people on here have had more problems with their teeth post treatment than their history before.

Myself, going on five years post treatment with STGIII Tonsils and a lymphnode, four chemos, 35 rads, I don't have anymore problems with my teeth currently that I did pre Tx.

Sooooo, what I am trying to say..., I think you might be worrying about a lot of what ifs that you may never encounter...

It's always good to be aware, and pro-active, don't let it consume you either...

BTW, most here were Dx as STGIII or IV, and have survived and are alive and kicking very well...

Best,

John

phrannie51's picture
phrannie51
Posts: 3683
Joined: Mar 2012

Stage III or IV.....HNC is one of those diseases that very often manifests itself via an enlarged lymph node in the neck....and that's what gets us to a Dr.  Then the Drs. want to do antibiotics for a couple of weeks to see if that node will go down.....when it doesn't then referral to an ENT comes about (my ENT appointment took another month).  As for 2/3rd's of the cancers returning, I'd say that is quite a bit higher than what I've picked up being on the forums....

I know you're very worried about your teeth.....and that hospital dentist following you around in your dreams....they may decide to make you guards for your teeth, or a flouride treatment to give you while you go through rads....that might be all he has in mind....

p

Roar's picture
Roar
Posts: 239
Joined: Mar 2013

I had unknown primary- one lymph node infected but because it was a lymph node and the size of it, the cancer was staged a 4. I had 3 chemo cocktails and almost 40 rads- 5 days a week - they gave me weekends off. I am now almost 9 months cancer free but still battling side effects

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I was diagnosed Stage IV, unkown primary. I recall my initial ENT waffling on the question mumbling something like "staging isn't important in H&N cancer". 

My team at Johns Hopkins was straight up and honest, telling me like it was. I'm NED 4 months after treatment. "F" what the stage is, kick Jack in the A$$!

"T"

zaac23
Posts: 24
Joined: Dec 2010

I was told scc frequently hides in lymph nodes, that is why they often remove alot of nodes around the primary site. the rads are an insurance that they got everything that might be hiding. you have a option not to have rads but its a good idea. I heard 10-20 % recurrance first 2 years after diagnose. teeth, get a good spec because we scare alot of regular dents and many know little about post rad conditions

jcortney's picture
jcortney
Posts: 411
Joined: Sep 2012

Stage IV Sq BOT w/N2C.  That means lymph nodes on both sides compromised.  My ENT told me that it is always S IV is always classified when the nodes on both sides are effected.  I'm almost 8 months out of treatement and clear.

So, as the other folks have said, don't worry the classifacation too much, even though I completely understand your concern (scared the pee out of me when he told me too).  For the most part, we have a cancer that responds very well to treatment.

Joe

boardwalkgirl
Posts: 263
Joined: Jun 2012

I was diagnosed as a stage IV but my doctor says that is how they stage it if a lymph node is involved, it isn't as bad as other cancers that are staged as IV. I was an unknown primary, they had removed the lymph node thinking it was a branchial cleft cyst and didn't know otherwise until a week later. I went to my dentist and talked to him about my teeth before I started treatment and he strongly suggested fluoride trays which my medical insurance covered 80% of the cost of. I had 35 treatments and 3 rounds of chemo. I am a little over a year out now, two clear scans since treatment. The Dr says my prognosis is very good but will be even better in another year if I have no reoccurance by then. Keep yourself educated, this site has so much information, and what better people to learn from, then those who have been thru it, but don't let it consume you. Stay positive, it makes a world of difference.

jackflash22's picture
jackflash22
Posts: 241
Joined: Aug 2013

I guess the nearer I get to the radiation dates the more nervous I get and search the web for info. I started with a swelling in my neck between my ear and chin. I hadn't noticed it before the 6th April. My niece urged me to go to the docs to get it checked but I didn't go for 2 weeks hoping it would go down. I had my granddaughters wedding on the 4 May so didn't tell anyone I was going to the docs to get a lump checked out. The result of the fine needle biopsy came back as signs of malignancy. I hid my lump from my 3 kids and grandkids with my hair. Then I had to have a proper biopsy with an overnight stay in hospitlal because they were going to take out my tonsils. I woke up still with tonsils, what they had found was a small primary on the base of my tongue ..right side, and secondary cancer in the nodes. My family by then knew and were very supportive, my daughter or grandaughter was with me every app't. I had a neck dissection... 9/10 hour op....and they took out the tumour with a margin and repaired my tongue with my cheek lining. On my 6 week assessment they said they took out three cancerous nodes and more clear nodes down to my jaw line. I have no swellings on the left side of my neck. The tongue had a clear margin but was very close to the edge. I was then told I was to have 6 weeks of rad 5 times a week and a PEG fitted . Teeth weren't mentioned (I picked that that info up on searching the web by putting in field names). I found on the web they dont update info as much as they should as some I was reading was years ago.  When I had my assessment I was also getting my mask fitted and made and ct scan with markings so I took 3 diazapan to calm me having the mask fitted and also my great grandaught was with my granddaughter in the room with me and she was playing boo with the doc behind a chair (shes15 months old) so I didn't take a great deal in. I have an appt to fill in the blanks on the 11th. I have been bombarded with letters for appt all through Oct to Nov... 7 in all and then some. I'm not an organised person so I just stuff them in a file and write the dates in my little book. I do get reassurance from you all when you say the right things. I feel I want to bury my head in sand till this is all over but a morbid part of me makes me search for everything I can on tongue and node cancer. A lot of it I dont understand. In America it seems your more informed on your stage cancer and are given names for it like stage IV or IIIV none of this I understand. I read whole lists of the treatment you have had with code and stages and such, all gobbly **** to me. I just want to know from my surgeon is what chances I have to get a cure. I haven't been told I will have to have chemo that will probably be my next shock after the rad.. I'm very grateful for your reassurance and take some comfort from it. I'm probably reading things in your treatments that I dont understand and take it that you have had more than one cancer. I think once I have been having rad for a week or so I will accept that theres no gain without pain and accept everyone is doing everything they can to make me better. I will stay with the survivers and report in how I'm doing....

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

As mentioned before, the SuperThread, first post in the H&N Forum can give you tons of info..., even on the stages.

It doesn't really matter a lot, the treatment is pretty much always a combination of either surgery, radiation and chemo. Usually a combination of all three, or at least two.

Like you have found and why we stress, not to Google too much or at least recognize that the stuff you find, or most of it is pretty old. Also a lot of it doesn't include more recent studies and cases dealing with HPV in the mix.

The first two years are the greatest for recurrence, but it's still relativevely low.., unfortunate that it's in the mix at all... But overall we are years from the past results.

You will more than likely become very eductaed and informed by this time next year...

As for your MD visits, it's serious stuff..., what is said is important. Take someone with you that can take notes, and ask questions that you have thought of a long the way and written down.

Best,

John

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

You might want to get a calendar. The appts. can become overwhelming and in my case, the calendar helped more than I can tell you. 

phrannie51's picture
phrannie51
Posts: 3683
Joined: Mar 2012

get a calendar you can hang up, and then write your appointments into the squares...that way you'll know at a glance what's up for each day....many days, all you'll have is radiation....but then there are days where you have to see other people as well.  It makes things easier when all you have to worry about is that one day....

I can see where you might get confused when some of us have had more that one treatment for the same cancer.  I had nasopharyngeal cancer (NPC....that's behind the nose), so surgery wasn't an option for me.  I had chemo treatment at the same time I was getting the radiation....then after radiation was over, they gave me 3 more chemo treatments.  For me having cancer was scarier than the treatments....I just wanted it OUT of me...the sooner the better. 

Also, it's not like you go in for your first rad treatment and come out with all/every possible side effect.  The side effects are cumulative....you might not feel anything at all the first week....the second week you might find that your tastebuds are giving up the ghost, or that your mouth is starting to feel dry....it's a gradual thing. 

When you go in on the 11th, maybe ask them "what about chemo"....if they haven't mentioned it yet, then you probably aren't going to get it.....they usually give it at the same time as you're getting radiation.

You're going to get thru this, JF....take heart that so many others have done it, and made it through.  Lean on family and friends for moral support, as well as the things you see as important....meal fixing, cleaning the house, doing a load of laundry....they'll chip in, and this will be over faster than you can imagine while peeking into this end of the tunnel.  Not one of us wasn't scrared when we started....but 2 weeks into treatment it becomes a part of your day....and you realize it is tempory....2 more weeks and you start seeing the light at the end of the tunnel.

p

PS....stay off the internet!!!  That's a rule Smile 

 

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

I had the same localization, stage and treatment (a slightly different chemo was switched later, due to toxicity) as phrannie51, so all she said before also applied in my case.

I can’t stress enough that you need to be clear on your treatment plan. During the 11th meeting you’ll have to get answers to a lot of questions. Please take someone with you, who can jot down the answers.

You need to clarify at least:

- confirm what stage;

- what kind of radiation (IMRT is the best bet, if everything else, should be clarified what and why) and dose (is it 70 Gys, or less; if less, why?).

- if concurrent chemo. This means that during radiation, you might also have chemotherapy, a platinum derived chemo, highly probable (e.g. cisplatin). Please note that radiation + chemo are enhancing each other; they are more effective than if given successively. The downside is there will be more toxicity and more difficult to tolerate than given alone.

- if there will be any more chemo after concurrent radiation (strongly recommended if it’s stage IV).

The above is not the sole treatment protocol available, but it’s pretty common and effective. The common theme is that the radiation (to be more effective) is given with another anti-cancer treatment: chemo – like cisplatin, or “targeted” (more complicated to explain here) therapy – like Erbitux.

The variations are based mostly on the clinical team’s experience with different protocols, and your tolerability to the side effects of the treatment.

 

wellington90
Posts: 20
Joined: Sep 2013

Did you have any symptoms at all?  Well wishes for you!

CivilMatt's picture
CivilMatt
Posts: 2921
Joined: May 2012

 

JF22,

I would throw away whatever you are reading; it is starting to bum me out.  If I had been given all the downer information you have received, I would have been a basket case.  Instead, my plan was to survive and live (even though I was stage IV and had a lymph node involved).  I also had enough mercury in my mouth to make a thermometer, let alone three caps.

Now is the time to plan your successful battle with this crap.  Don’t get hung up on statistics or negative (bad) information you will hear.  I paid specific attention to everything (tips & tricks) which helped me navigate this morass. (Information learned here by the great H&N team of the winter & spring of 2011 & 2012, thank you very much).

The cancer started this; the doctors are going to poke it with a stick and stand back and see how you respond.  You need to learn to go with the flow; this battle is tough enough when things go your way.

Matt

 

donfoo's picture
donfoo
Posts: 1205
Joined: Dec 2012

Hi,

Join my website where I have fully documented common topics of HNC patients and survivors. The following link provides full descriptions of each stage as well as the link to the authoritve NCCN HNC staging document.

http://beatdown.cognacom.com/content/cancer-staging

You need to get a very clear answer why chemo is not being administered with the radiation. PLatinum-chemo is a radiosynthesizer that makes radiation more effective. Once in awhile you hear of rads only but there is usually some circumstance that creates the deviation from standard protocol. The chemo must be platinum based meaning cisplatin or carboplatin.

Radiation and resection are the only sure ways to remove cancer. Chemo can kill microscopic cancer cells but will not kill primary or nodal cancer larger than several millimeters. Often time chemo is the therapy used to "mop" up any loose cancers that may have strayed from the primary or locoregional metastisis.

Did your case go before a review at tumor board? If not, consider getting a second opinion at least to confirm the defined therapies. 

The idea of getting all your appointments blocked on a calendar is basic and essential. There were days when I had multiple appoitments and more than 7-8 in a single week. You will have to get fully organized on the appt aspect just to stay sane.

My own advise on prognosis is to not go there. I did all I could to avoid the topic as much as possible as you want to focus all your energy on doing your best during therapies and recovery. Any diversion or worry going to the prognosis bucket just drags you down with zero benefit. The best thing you can do to maximize your prognosis is by researching and learning as much as you can about what you need to do to get through your treatments and stay healthy.

I believe all dossimetrist and the RO create a map that attempts to minimize collateral damage to other oral organs and teeth and bone. They will contour and regulate the beam but are going to be conservative and not cut it too short in areas and will over radiate rather than under radiate or skip areas. If cancer is near the jawbone then that area is going to get radiated quite a bit, no way around it. For those with primaries at BOT or further away from jawbone, maybe they are able to avoid the teeth and jaw getting over radiated. You have very little control over this but it does not hurt to probe the RO hard on the topic. 

I asked to see my map and also did my homework when I had this discussion with the RO. Given no cancer crossed the middle I asked if the parotid on the left side would be spared to improve my saliva. He stated they were going to dose paint the entire left side with 5300 grays just to be safe they got every possible cancer cell floating around. I asked something like did they have to do that and he just sort of looked at me funny and made a comment like well don't you want me to kill all the cancer? pretty fast way to get that point across. lol

On the topic of PET, get informed and make an informed decision. I would not just go along and get one as there is a decent chance you will not need one so why do a procedure you do not need. Get one if you need one. This is a highly controversial topic so be prepared to hear both sides of this argument.

Glad to hear you are reading and learning and questioning more; it will all lead toward best outcomes for you. don

jackflash22's picture
jackflash22
Posts: 241
Joined: Aug 2013

OK no more surfing the net, I've taken everything said on board and will take your advice. I'll get a print out of a Calender for the rest of the year and write it all in. I can also put it on to my IPad. I use it it every day mostly for my hobbies and when really board I play a games called Angry birds and Solitaire blitz.  My daughter put them on the ipad while I was two weeks in hospital and bored. I'm also going to plan my trip I had to cancel this year to  Melbourne Florida where my sister lives. I spend a month with her each year, should have gone on the 9th Nov the week my rad finishes. I will now think about going Spring.  I'm not all doom and gloom I have my grandaughter just down the road and my baby grandaughter, we go to the parks and let little Jas go mad in the water jets in the kiddies playground. I got a burst of enthusiasm yesterday and cleaned out my sewing room and started getting my doll patterns out that I've been meaning to do also maybe a couple of little sun dresses for J. Its Autumn now but the weather this year has been marvellous. Its 26 all week thats hot we've been over 30 some times. Anyways no more doom and gloom..positive thinking again as I first started off before surfing

KTeacher
Posts: 925
Joined: Jan 2011

Enjoy time with your family and the little one.

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

J-

Ditto everyone else's advice given above.

And the best thing you can do for yourself is stay off of "Dr. Google".  Most of the stuff on the Internet is outdated and inaccurate to say the least.  We have all been thru the journey that you are embarking on and we have come out the other side.   The treatment is tough, but it is very doable.  Stay positive...that will help you a lot over the next few weeks.

Get a calendar and a notebook, so you can keep all your appts straight and write down any questions you have.  Ask your medical team to explain anything you don't understand.

And of course, come back here and ask us...anything, any time.

Good Luck to you.

 

Noellesmom
Posts: 1298
Joined: Aug 2010

Watching the forums is not the best way to educate yourself on the statistics related to your specific type of cancer, jackflash.  This is a tough group of people, in for the long haul and keeping each other up and ready for the fight.  It's a good place to be.

BOT (base of tongue) cancer has a good chance of a cure.  To read on the chance of recurrence you'll need to go elsewhere - American Cancer Society has excellent information.  You'll find that the long-term (5 year) survival rate for BOT is different than for other head and neck cancers - each area has its own survival rate.

That being said, educate yourself, yes, but remember the individual attitudes make a LOT of difference - listen to your medical cancer support team (doctors and nurses and technicians) and do what they tell you.

Call your dentist and discuss treatment for your teeth.  Since no one prepared you by telling you radiation would follow the surgery, call and talk to the radiation oncologist and find out what you are looking at - how many treatments, and preparations you need to make, etc.

Let us hear from you.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Something also to consider when looking at survival rates... Along with the many, many influecing factors, health going in, age, heredity, attitude, tons.... Is the age for the data you are looking at...

I noticed on the ACS site and oral cancer survivor rates....two things.

One it states that STGI, I, III are all statistically the same as for survival rates, with IV being slightly less.

BUT...., also the data collected was for the period ending in 2001.

That's like over twelve tears ago..., a ton has been researched since then... Hell, HPV was rarely mentioned when I first joind this board in 2009. Now nearly everyone here or at least I'd say in the 75% plus range are here as a result of HPV derived cancer.

So, myself, I'm not basing my longevity on statistics and old information....

JG

Noellesmom
Posts: 1298
Joined: Aug 2010

Statistics are just statistics. 

 

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Had a personal friend end up being our Oto Onc Nurse. She spit it right out to us. 

Data on the internet is Bullcrap. Outdated and anyone can put it there.

Rob is Stage IV tonsil, lymph node involvement (several). No dissection. We are in the best Hospital in our state with a Comprehensive Cancer Center. University of Michigan. Our OTO Onc has been sited in many journals of medicine and stated back in 2008 that Oral Cancer casued by HPV is an epidemic. But being HPV+ does not change the treatment plan just the survival rates are better.

Survival rates are higher than ever. cancer patients are improving everyday. Protocols are based on individuals and we know that not one person on earth will have the exact same cancer in the exact same place. 

Not one of of docs bs'd us. They laid it out there and did thier jobs. We never questioned, except dissection, which in all the trails they have done over 20 years they found no significant difference in do it or don't as everything is getting fried with the radiation. 

I believe in my heart that Rob is going to be cancer free for a very long time and I have our team to thank for it. We will be forever greatful to them for life.

I think you are on the right path and have some great docs working for you. Just remember doctors do not like to lose and virtually will stop at nothing to help you. They want people t win this war or they wouldn't be there.

Sandy

 

Viilik70's picture
Viilik70
Posts: 57
Joined: May 2012

We are not doctors on here for sure, but what I can say is we've all beaten this h & n cancer at least once. Some of us have beaten this thing 2 to 3 times and like what has already been mentioned a lot has to do with a positive can kick this things butt attitude! You will do fine because I sense the fire in you and your no nonsense attitude and with the love of your family you can't be stopped! God bless!!!

john j

 

you all have great input and insight And are such a blessing!! Keep it up!!!

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