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Newly Diagnosed but Stage 4 - Scared to do Anything!

Cancernaut
Posts: 1
Joined: Jul 2012

Hi,

Maybe I've googled too many discussion boards, because I am so scared of doing Anything now. It seems like I'll be so much worse for "quality of life" compared to just going forward as is, with pain medication if/when symptoms worsen. Just want to enjoy my time left with 2 grown children, 2 grandsons, play my guitar, etc., and I need to be able to keep working too.

I am a healthy (ha! who knew?) 60 year old woman and this week I was newly diagnosed with Stage 4 Adenoid Cystic Carcinoma.

My oncologist met with a tumor board and decided against surgery, but recommends radiation therapy. Possibly chemo too.

Any Stage 4 Survivors out there that have enjoyed "quality of life" with or without treatment? I would love to hear from you. In the meantime, Positive thoughts headed your way to be cured of your cancer and to have a terrific day today!

Skiffin16's picture
Skiffin16
Posts: 8285
Joined: Sep 2009

Welcome....

Yes, one of the first things most here will tell you...."Stay Off of the Internet", LOL....

While I wasn't Dx with your specific cancer... I was Dx with STGIII NPV+ Tonsil Cancer.

I'm a fighter and wish you to consider that path as well.

My Tx was in early 2009, so far all is good...

I went through sixteen weeks, four types of chemo and seven of those weeks were with radiation.

While it was tough, it was all very doable, and survivor rates are good.

As for quality of life.... I'm now 58.

I'm actually to a point where my "New Normal", is my old normal.

I have all taste back, nearly all saliva has returned as well, and I'm not on any meds other than Protonix for acid reflux.

So to me life is good....actually very good.

Best,
John

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

I was on the internet right away when Doug was diagnosed - couldn't help myself. However, I did find several studies that showed radiation/chemo were as effective as surgery against H&NC (and I think they were all stage 3 and 4 cancers). So, don't be scared by the "no surgery decision" (in the old days, that meant bad things - these days, it often means it isn't necessary).

My husband is the one who had the cancer, so I'll leave it to him to talk about quality of life. I can say that he had just about every bad side effect of the treatment, and didn't looks so great for a few months there, but today (more than a year out) no one can tell from looking at him. He just got back from a business trip to Brazil and then played hockey last night.

Good luck and check in often - the list was a valuable source of information and support for us.

phrannie51's picture
phrannie51
Posts: 4320
Joined: Mar 2012

living quality lives. Head and Neck cancer is one of those cancers that rarely gets caught early, so most here are Stage III or Stage IV.

The very first thing I was told when I got here was to stay off Google, and I'm glad I followed that advice...it all bleak and ugly information...and OLD informtaion. Here in this forum you have scores of people starting treatment, going thru treatment, or done with treatment (some for years) to give you the real skinny on life during and after throat cancer treatment.

I was Dx with Stage III Nasopharyngeal Carcinoma...No surgery, but I've had 35 radiations (tumor was gone before I was done with them)...and 4 chemo's so far, with two more to go. I fully plan on going back to work in September...I fully functional, except my eating habits have been slowed down (fully plan on them returning to close to normal at least).

You're too young to just give up before you even get started (tho I truly understand the first reluctance to get involved in what seems like a lot of work and misery)...actually going thru treatment is NOT as bad as it may appear when standing on your end looking thru the tunnel...honest to gawd....and SO worth it. Please rethink your reluctance.

p

rush1958's picture
rush1958
Posts: 211
Joined: Jul 2010

Howdy,

I'm a Stage IV - SCC-BOT Cancer survivor. I'm a little over two years out from the end of treatment. I won the trifecta - I had surgery, chemo and rads.

Everyone is different, so there is no "one-size-fits-all." However, I can attest to a higher quality of life post treatment tnan prior to treatment. The weight loss that occured during treatment cured a variety of medical issues I had prior to diagnosis. Changes in life style since treatment have kept those issues at bay.

As to the treatment - it is tough. The side effects - they're pretty tough too. Fortunately, I can say that the treatment was worth it and the side effects have mostly faded away into my memory.

My ability to taste has returned to just about normal. I don't have any issues with swallowing. I don't have dry mouth and I can eat anything, but I can tell that my saliva production is a little less than it was prior to the treatment.

I recently started a low dose thyroid hormone replacement to treat a sputtering thyroid gland. This was most likely the result of the radiation, but it just requires a once daily pill.

All-in-all, life is pretty good.

I know it all seems pretty overwhelming right now, but you've come to the right place. You are amongst a group of folks with a wealth of wisdom.

Rush

MarineE5's picture
MarineE5
Posts: 820
Joined: Dec 2005

Cancernaut,

We don't know allot about you and I didn't have your exact type of cancer, mine was Base of tongue with removal of over 1/3 of my tongue.

YOU can't win the FIGHT if you don't step into the Ring.....

Yes, I read the side affects typed on the internet, but you also have to remember that each of us reacts to treatments differently. What may be terrible for one, may not be so bad for the next person. I can honestly say, during my treatments of Radiation, I was in some discomfort, but was not in any real pain. There are Med's to help keep the pain at bay.

YOU can DO this, as you will see all the good people here that will answer all your questions. You are 60, 60 is not old, 99 is old and I plan on going to 100 and smoke a cigar like George Burns and Bob Hope at that time, and I don't smoke : )

I hope you give yourself a fighting chance. Each day is a Gift.

My Best to You and Everyone Here

boardwalkgirl
Posts: 269
Joined: Jun 2012

My diagnosis was Stage IV HPV+ squamous cell carcinoma with unknown primary. Found in lymph node in right side of neck that they had said was a branchial cleft cyst. According to my dr. they graded it a stage IV due to the fact they know it didn't start there, he said it doesn't mean quite the same as when they stage some other cancers. Don't know if he was just trying to make me feel better or not, but he seems like he is always honest and upfront with me. He says they probably will never know where my primary was and my prognosis is good. So don't give up before you fight. I know it seems scary and there will be days you will wonder why you are fighting, but look around you and see the people you love and you will know why.

Whitedove2012
Posts: 2
Joined: Dec 2012

My neice, also has soriasis and it causing the cancer to grow faster. the tumor board met today and called her and told her they recommend surgery first then treatment. she is facing vocal cord removal, a breathing tube and temporary feeding tube. she was totally against this at the first meeting with doctors, now the board of 5 are telling her they highly suggest it as the survival rate increases. the soriasis will limit the chemo from being as effective on cancer. I want to get radical and take her somewhere where she will survive this without having such evasive surgery at such a young age. i know the body can heal if you give it the right combination of nutrients. can you reach out to me with any suggestions.

Whitedove2012
Posts: 2
Joined: Dec 2012

My neice, also has soriasis and it causing the cancer to grow faster. the tumor board met today and called her and told her they recommend surgery first then treatment. she is facing vocal cord removal, a breathing tube and temporary feeding tube. she was totally against this at the first meeting with doctors, now the board of 5 are telling her they highly suggest it as the survival rate increases. the soriasis will limit the chemo from being as effective on cancer. I want to get radical and take her somewhere where she will survive this without having such evasive surgery at such a young age. i know the body can heal if you give it the right combination of nutrients. can you reach out to me with any suggestions.

Billie67's picture
Billie67
Posts: 843
Joined: Jul 2012

And I think you will get a better response. Simply click on "start a new post" and copy and paste your original post.
In the mean time, where does she live? Maybe someone on here can direct her to a place where they know.
Can't wait to hear back from you?
Billie

CivilMatt's picture
CivilMatt
Posts: 3480
Joined: May 2012

Hi Cancernaut,

To treat or not to treat that is the question. Well, I think the odds for a longer, healthier and enjoyable life are with treatment.

I am Stage IVa, SCC, HPV+, BOT w/one lymph node, I received surgery, radiation and chemo and actually feel pretty darn good. If I had chosen to not go the treatment route; I assume the cancer was guaranteed to eat me up a little at a time (to scary to think about). With treatments I am hoping to have many more years, good years.

I am 55 years old and the decision to seek treatment was the only way to go, I have things to do (finish a chicken coop for one). Don’t you have a chicken coop to finish somewhere?

Be strong, you are young and we will help you traverse the symptoms if you choose to fight.

Best,

Matt

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

correct me if I'm wrong, but haven't heard from many folks who have "quality of life" when their advanced cancer symptoms worsen.
for me, the motivation to seek a diagnosis/cure was due to declining quality of life. loss of weight and energy meant that I was no longer able to skate/hike like I once could. trismus in my jaw meant that I couldn't open my mouth wide enough to bite a reuben sandwich. had I allowed the SCC to progress, I have no doubt my quality of life by now would have been even worse.
as it is, I'm gaining weight again. the past three months haven't been fun, but they're in the past. I plan on living to see my grandchildren, and taking them ice skating. that's quality of life that I absolutely wouldn't have if I'd rejected treatment.

hwt's picture
hwt
Posts: 2319
Joined: Jun 2012

When this all began for me (just turned 61) I asked the surgeon if I had any other options and he bluntly told me "yes, you can do nothing and wait to go to hospice". He also said it was treatable and "curable". What he did not tell me was how difficult the journey was. There were definitely days when I questioned whether I had made the right decision. When the going got tough, some days I lost sight of all that optimism but then it became a memory when the first CAT scan came back NED. I feel like a traded 6 months for a chance at a lifetime.

Kent Cass's picture
Kent Cass
Posts: 1870
Joined: Nov 2009

I was stage-3 and am now 3+-years post-chemo and rad, only, treatment. Stage-4 for most Cs is not good, and with some it does kick them into quality of life mode. However, for H&N this is often not the case, as others above have noted. Hope that's the case w/you.

kcass

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

I'm stage 4a tonsil, 40 years old. The only way I could have considered doing nothing is if I were twice my age or the cure rate was less than 10%. I have too many adventures left in me! I think everyone here does also. The treatment is bad but it's NOT THAT BAD and certainly not worse than the alternative.

katenorwood
Posts: 1911
Joined: May 2012

Cancernaut,
Hello, and welcome to our group. I also am living with the adenoid cystic carcinoma dx. Please don't give in to the fear of the unknown. Mine was in the right submandiblar saliva gland. I was able to be resected and tried rads but failed miserably. Was effecting my vocal cords and voice box to the point I was hospitalized for it. I decided to back out of it due to my quality of life being effected by it. Now I have to live with my decission (even though my docs agreed) and know my cancer is still lurking. Are your doctors knowledgable and have they treated patients with our rare form of cancer. Mine weren't. I am going to send you a link for a foundation with wonderful promising information on our specific cancer. Don't hurry on a decission not to fight until you have all the facts. I will be thinking of you...and there are a few others with ACC on this site. I will fight on for a cure, and try other options. I hope you find the strenghth to do the same ! Warmest regards ! Katie

Couldn't get the msg sent so....the site is under yahoo search ACCRF or ACCOI. PLEASE read the info under these links they are specific to our cancer period. Also give treatment options that most doctors aren't aware of. I wish you only the best...and again being informed is the best policy on decission making !

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

Treated in 1996. Treatments were rough as well as a short time following my completion of treatment but we all made it and I too get to enjoy my grandchildren as a result.

Hang in there a give it a fight. Great site for information and venting your fears nd frustrations.

Billie67's picture
Billie67
Posts: 843
Joined: Jul 2012

I chose to do chemo and radiation and surgery wasn't an option for me either if I ever wanted to talk again. I too was diagnosed as stage 4. My oncologist said that stage 4 in the H&N is much different than anywhere else in the body. Much more treatable and curable.
I just finished treatment 6 weeks ago and starting to feel like me again. I won't lie, treatment (radiation more so than chemo) was tough but doable. I will have my first scan at the end of the month to see how successful we were but both of my oncologists and my surgeon are extremely positive that we nailed it.
I say please don't do too much research on the Internet because you can find all kinds of horror stories that may not be true or even pertain to you. I never looked once! A nurse at the office recommended this site and I'm so glad I found it. Everyone has been so positive and helpful.
Lastly, you are young, I say fight and beat this but I can't and don't intend to make that decision for you. People much older than you have done this treatment and are living healthily now. Just keep that in mind. Good luck to you and whatever you decide to do. Come back often, we are always here to tell you how we got thru certain periods.
Take care,
Billie

Tim6003's picture
Tim6003
Posts: 1506
Joined: Nov 2011

Sorry I did not post sooner. I seem to keep missing posts ..busy with work and life I guess...

...now there's a point to consider. I was stage III base of tongue. No surgery option for me...only radiation and Erbitux ...and how can one describe the quality of life now (still have pain, comes and goes) eat smaller bites, chew longer, do get tired sometimes (I am 6 months past my last radiaton)...

...so here is what makes it all worth while..this past Father's Day when I sat in church and all five of my children and wife sat with me on that row...as I looked down the row at my dauther Georgia 13, my sons Kohle 11, West, 8, Jace 5 and Raylan 2 as well as my beautiful wife ....I knew no matter what, I had quality of life if I only had gotten one more day of life extra from all my treatments and all I went through :)

And I don't have the side affects or issues some do have on this journey...and my heart hurts for those less fortunate than me every single day. They are always in my prayers!!!

Best,

Tim

D Lewis's picture
D Lewis
Posts: 1572
Joined: Jan 2010

Hi Cancernaut

I was diagnosed at age 55 with stage 4 Squamous Cell Carcinoma, Base of Tongue with metastises to several lymph nodes on both sides of my neck. Two minor surgeries - one 3 cm lymph node cut out, and tonsils removed during an extensive biopsy process. Eight weeks of oncurrent chemo and rads, which ended just over two years ago. Treatment was very difficult, but very much worth it. I am so very happy to be here now, with my family and friends, and I plan to stick around for a long time. My quality of life is great. I've got a few lingering side effects, but nothing debilitating. You CAN do this.

A wise nurse told me that the treatment process would "consume" about six months of my life. And so it did. After that, I got my life back.

Deb

mls351w
Posts: 90
Joined: Jul 2011

I was diagnosed at stage 3 base of tongue and progressed to stage 4 right before treatment started. I was given choice of surgery/light radiation, heavy radiation/chemo, or do nothing.
I went with radiation/chemo.
First of all, don't go to any site but this one (imo).
These are the best group of people to confer and comiserate with.
Only you can decide how to deal with this. The treatment can get rough and the side effects can be tough. But I NEVER thought about doing nothing. I think that "doing nothing" is not in anyone's vocabulary that posts on this site. This is a group of fighters. Personally, I don't know if quality of life would be to wait around to die. In my case, I fully recovered and have no lingering effects, so I might not be the best person to discuss this with you.
I had a yearly check-up last month and have been "clean" for 6 years.
Sorry if my attitude is a bit harsh, but there it is. If you decide against treatment, then that is your decision and I respect the reason behind it.
My sincere best wishes to you and yours whatever you decide!

Mark S.

patricke's picture
patricke
Posts: 498
Joined: Aug 2006

And in this corner is a stage 4 bot, diagnosed in July of 2000, treated with radical dissection surgery in September of 2000, followed by 35 radiation zapps, but no chemo. I was the healthiest person I knew at the time of my diagnosis (e.g., ran regularly, lifted weithts, surfed, ate my greens and antioxidents, etc), but cancer is, as we know, an equal opportunity disease. None of the treatment was a walk in the park, and I, like the rest of the crew, have adjusted to a new normal. Overall, my quality of life is great, all things considered, in that, I am doing just about everything that I did before my cancer attack, but I have had to adapt, and modify. Everyone's situation is unique, in the midst of a lot of commonalities with others who have been or are in similar diagnostic and treatment situations. I believe that the key to one's quality of life has more to do with attitude, flexibility, and adaptibility than with the situation itself. I believe that it is worth going thru the gauntlet of treatment, to come out the other side and be able to keep having fun with your family; it was for me. Lastly, I don't believe in throwing in the towel to let cancer win without giving it my "A Game Fight." I just had a delightful week with my two kids and grandson. Life is good, I'm just happy to be here!

PATRICK

osmotar's picture
osmotar
Posts: 989
Joined: Jul 2011

Patrick,

I have to agree with you about the unique situation each of us goes thru..I just spent the weekend at the Grand Canyon with family, a year ago I was starting my chemo treatments...I have way too much life ahead of me.

Linda

D Lewis's picture
D Lewis
Posts: 1572
Joined: Jan 2010

:)
This post made me smile. I just spent two weeks camping in the high Sierra. Gotta love those sunrises and sunsets.

Deb

CMOD54
Posts: 2
Joined: Aug 2012

I felt the same way did not smoke or drink very much but ended up with tongue cancer that spread to my lymph nodes on one side unfortunately you are automatically considered stage 4. Recovery has been tough but the prognosis is very good. I cannot comment on the quality of life without treatment, but I would say you would just be waiting around for the other shoe to drop. I had 8 weeks of radiation, and 2 rounds of Chemo. Finally starting to get my taste buds back actually woke up Monday and could taste my Starbucks Vanilla Bean. Just starting to eat food but tongue and throat are still really raw so its tough. But listening to people on this site and their stories make you believe you will get through it. Working may be tough I took off 2 months, the first month after treatment was really tough, but I am 7 weeks out and finally starting to feel semi-normal. Good luck, this is my first post so hello to everyone you are an inspiration!

Dav1965
Posts: 127
Joined: Apr 2011

I had 3/4 of my tongue cut off and replaced along with double neck dissection. Plus i had radiation and chemo. I had so much radiation some of my jawbone was eaten away plus i have a cyst in my jaw bone now.

I fought as hard as i ever had. I still hurt daily and i take 2 60mg of morphine a day and 6 oxycodones when i need them. But when i get to play with my Grand babies its all worth while. I am a 46 year old white male.

kerry501
Posts: 1
Joined: Aug 2012

hi!! i was 19 when i was diagnosed with stage lll larynx cancer, and here i sit 9 years later, and no sign of it coming back (knock on wood) so far. You can beat this, and while some days will seem never ending, others will fly by, I had radiation and chemo therapy, and a feeding tube. never give up the fight my friend!

akotke's picture
akotke
Posts: 37
Joined: Mar 2011

I was diagnosed with stage 4 tonsil cancer in November 2010. Treatment sucked, recovery sucked but now I'm doing really well. I'm eating anything I want, I am working full time, taking care of my family again and just recently started school. I totally understand how much fear is involved. I didn't want to have chemo, radical neck dissection, or radiation. However I am very blessed to have had cancer in a time that all of these things were available to keep me around for my kids. I might be a little worse for wear but I am enjoying life, food, and being with my family and friends.

Tim6003's picture
Tim6003
Posts: 1506
Joined: Nov 2011

but I'm glad it came up again...it reminds me of where I was and am now and is a great inspiration to read.

I pray all on this thread are doing well!!!!

Tim

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

Yet ANOTHER stage four, spread to nodes survivor. I, too, was told that up-front surgery would not be an option for me - I was very disappointed, and worried. I was ANOTHER one who foolishly spent way too mucy time Googling my cancer - my odds - my folly. I tell many people on the fence about treatment - for most people, it's two months (including getting ready), then a couple three weeks feeling pretty bad, then it's recovering. Doesn't seem like much time when compared to the rest of your life. And that's assuming you're one of the ones who have a rough time of it. Not everyone sufferes terribly during treatment - most all of us are somewhere between horrific and uncomfortable. I think I only recall seeing one person who said they were going to stop treatment because it was so bad. Treatment for me wasn't fun - but it sure beat the bleep out of having cancer.

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