New stage III - Questioning which way my life should turn

Posted By
6/24/2011 3:18am
View other posts by
Activity
Replies: 20

I was recently diagnosed with stage III after a biopsy of a golfball sized tumor in the lymph node in my left armpit. It took a while to do the biopsy, PET and CT scan and I had a lot of time to research. No primary tumor could be found. I'm still waiting for the brain MRI.

I know this form is all about encouragement and support, and my oncologist seems awfully rosy, suggesting trials and interferon. I'd like some advice from others that may be or have been in my mindset.

I'm 46 and single with no kids. I own a business and have done well for myself. I have no fear of melanoma. But there are two fears that keep me up at night:

1) what if I spend months or years in aggressive treatments, trials and waiting rooms only to die without really living?
and
2) what if I ignore treatments, sell my business, go have a blast and blow all my money, only to live another 20 years?

I watched my dad work two jobs most of his life, save up for retirement, then die at age 53 of esophagus cancer in only 6 months. I'm not about to let that happen to me.

I know there is no clear answer as to my life expectancy. I'm less concerned about having a long life than in knowing how long that might be. In other words, I'd rather know I had 2 years than not know and live for 10. It may seem premature, but my impulse is to cash it all in, skp the treatments, and go have fun. I could have one he'll of a life for 5 years, but if I'm still around after 10, I may want to kill myself.

I didn't mention that i have nothing on my skin, and plan is to remove the regional lymph nodes after the MRI. Assuming the MRI wont find anything, I'll be left with a Stage III Melanoma of Unknown Origin. I'm not sure what to make of this.

Hi Flydiver. I saw this post, and I wondered how you were doing?

I was diagnosed with IIIC in 2010. At first, I was in a weird place too; which way do I go? how can I make any plans? We were uninsured, so our treatment plans were EXTREMELY limited. The melanoma was excised and all my axilla nodes were removed, then I was sent on my way.

My husband was VERY angry about the diagnosis, and very scared too, so we needed to reconcile how we felt about our prognosis before we were going to be able to move forward. My husband and I made a list of things we wanted to do together, incase I didn't make it to the 5 years point. 

Well, after 3 years, I pretty much do not think about Melanoma at all. I have (we have) gone to Canada, Oregon, spent some quality time on the California coast, and have worked to reorganize our small business to fit the "good days - bad days" fluctuations that just seem to come with this.

We have learned to live lighter. Cleaned out the basement and liquidated all the "crap" we have been carrying around for decades.

Our three year plan now is to sell our house to downsize dramatically, we'll buy an RV and do some traveling. We have been saving our pennies to make sure we can live for as long as we're around. Our business is web development and photography, so it works really well as a remote business from the road.

Life is good, and we both now take it as a gift and try to enjoy every single day. whether I live for 2 more years or 20 more years, each will be as full as we can get it. : )

I hope you are living well.

Sheenah

I am not going to worry about it until I am told there is something to really worry about, and then I will find a solution. I am not afraid!

I think it's way too soon to cash in your chips.  It is better to treat this as a wake-up call to live a more balanced life, to fully live the life you have right now with the intent to fully live all the days you are given, whether they are few or many.  There's no way to tell how many days you will have - not if you've stage III, stage IV, or someone who's lucky enough to have never heard of mm.

Katy

stage IV undead

Just keep going!

well said Katy

boots

don't back up, don't back down

Everyone has to answer this question their own way. What is the meaning of life? In my wife's case (Stage 4, brain mets, stroke, plus mets in her body and failed Yervoy), we talked about what was important to us. Is life about accumulating experiences or about friends and family? Although we have the means to travel the world - we'd be away from those we love. Better for us to be around our incredible support network, to invest in our community to make it better, to be active and engaged in life and bloom where we are planted. 

We know a single guy who seven years was diagnosed with advanced, non-treatable prostate cancer and told he had 6 months to live and nothing they could do. Sold his dental pratice for a lot of money - and proceeded to go everywhere and do everything. Lo and behold it didn't kill him, advancments came along, new treatments emerged and he's still alive. And the loneliest S.O.B you'll ever find. And now bankrupt because he blew all his money and is living off a small pension they couldn't tap. He's lost all connection with people who might have invested in a relationship with him. And lost the opportunity the disease presented to discover his own humanity and use it as a means to connect emotionally with those around him. It's so sad. So the other reply about a balanced life holds. But I think your last sentance holds too, especially with the new treatments emerging. 

So work less, get out in your community and make a difference, lead the efforts in your area to raise awareness about melanoma and it's causes and how to prevent it or catch it early, volunteer with youth and education, get involved in local politics and live a life that has true meaning - becuase you will have so much coming back to you in return. Do the treatments, figure out your mutations, and get on the treatments and trials that are appropriate to you. And get with a competent melnaoma specialist at MD Anderson or National Cancer Institute. 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

You remind me so much of Ecclesiates! Here's a link to it as The Message renders it. This is to the whole book so keep clicking the arrows at the bottom to advance to the next chapter. Short but you may well see yourself and get help with your questions.

http://www.biblegateway.com/passage/?search=Ecclesiastes+1&version=MSG

Friend, nobody knows what their future holds or how many days they have. Just because you have melanoma doesn't mean you're going to die from it. I'm stage 3b, have been since late 2008 and I'm alive & well &  kicking. And yet, I could have a massive heart attack sitting right here answering you and you'll never get the benefit of my great advice, which is....

I love what Nickmac said!  And you know full-well nobody can answer what you ask. How about cashing in just enough to do that one big thing on the top of your "Things I want to do before I die" list...you may not need to cash anything in to do it. Accopmlish that top thing, and then see your doctor...who I'm hoping is a melanoma specialist and if your dr isn't, then that really should be moved to the top of your list and accomplished first...find out exact staging...3? 3b? 3c? makes a difference...then start weighing you pros and cons based on however you make decisions.

I'm honestly not sure you're really asking what you're asking. You're too smart and savvy for that. Maybe you want some folks to walk with you through this...no wife, children, or dad and you know this is a place for encouragement. We'll walk with you. Promise.

Grace and peace,

Carol

I ask myself that almost everyday.  How do you live with one foot in the I will probably have a much shorter life expectancy than I had hoped for, yet may live on normally.

I have 2 young girls, single mom of a 3 & 6 year old.  I progressed to stage IV from IIA almost 8 years previously.  I went straight to IV without ever becoming a stage III.....  At least I still have my lymphnodes intact - lol!

After lung surgery and IL-2 I have been NED for a year.  I feel fine and to the core of my being think for some reason I have a more smoldering course if mel.  How do I live?  Do I go back to work which I love and is part of who I am or stay at home on SSDI and spend as much time with my girls.

Do I save for retirement or build a nest egg for the girl's education and forget about retirement.  Do I build a house like I wanted to?  Do I start my own practice like I was planning?  (I am a veterinarian)?

In the end each day you try to live in both worlds just in case.  Plan for the worst by making your wishes known, get estate planning etc., then enjoy each day to the fullest.  Do you get busy living, or plan on dying.  It sounds so simple, yet is very very hard to find just the right balance and wrap your head around it.

I was happy I lived to see last X-mas.  Now as more time passes and I remain NED, I am starting to save for retirement again - lol.  I went back to work and love it.  For me, it was part of taking my life back, afterall, I busted my tail to get through school to where I am.  I refuse to let mel make me give that up.  Then again, if you have a job you hate, then quit and do something else.  In a way our predicament although complex, gives us freedom to say - F this, why waste my time in a negative situation if I don't have much time left?  It can be empowering sort of like a yin-yang thing.

It gets better with time.  You will figure it out.

Best of luck!

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

I appreciate all the words of encouragement, but special thanks Kim M. You know where I'm coming from. I own a successful business, but I've been over it for a while. I figured if I stick it out another 4 years I'll have enough for a nice early retirement (at 50) and find something else to do with myself. It may seem hasty, but if there's a chance that I don't make it that far, or the retirement will be cut short, then all the more reason to get out now. But I'm equally afraid of cashing in too early and, God forbid, I last another 20 years.

The problem is that I'm stage 3 (metastasized to the lymph nodes), but as I understand it could also be stage 4 since we havent found the primary yet. In either case, its not good, but a pretty wide range as far as the prognosis goes.

Maybe nobody wants to hear this kind of talk but I've always been a realist, not a pessimist. And I want answers I know I'm not going to get.

Like you, my husband is 46 and had a golf ball sized tumor removed from his right armpit. In his case, he did have a primary removed from the same shoulder 2 years ago, yet when they removed it, it was tiny, tiny and they got clear margins. He was supposedly good to go, just get regular checkups with a dermatologist. He did and nothing was ever found until they removed the tumor and several other infected lymph nodes. By the time the staging process was complete, he was Stage IV. 

Does that mean that will be you? Nope. But you need to get to a melanoma specialist as soon as possible so they can determine this for a couple of reasons. One: because the treatments for stage III versus Stage IV are very different, and Two: because it will help you to answer some of those questions you are having. Obviously, the prognosis for stage III is different from stage IV. Again, with some of the advances they've made in treating even Stage IV melanoma recently, it changes how people should look at the disease. It is no longer an automatic death sentence.

Just look at the many Stage IV survivors on this board! There is a thread on this board whose title is something like "Stage IV and still kicking..." People are living longer and longer even at Stage IV.

Even if it turns out you are Stage IV (and of course, I hope that isn't the case), there are many factors: where it has spread to, how quickly the spread is occurring, etc. that will affect your outcome. 

All things being said, I would think it's a bit premature to go off and sell your business as of now. Get more information, see a melanoma specialist, get your staging complete. It still won't answer your "How long do I have to live?" question, but it will give you more facts to work with as you try to decide.

 While I can understand you not wanting to end up like your father, don't let his experience completely color your decision process. He died many years ago when there weren't as many treatment options available and they didn't know nearly as much about cancer as they do now. Not to mention that it was a different kind of cancer, which has different treatment options. My mother died at age 42 from cancer, yet we try not to let  that experience dictate how we will make decisions today. 

As Carol Taylor said, we are here for you. You do not ever have to feel that you are alone on this journey. If nothing else, I know I feel comforted by knowing there are other people out there that know just what I'm going through.

Best of luck to you and I hope you will let us know how things turn out.

Michelle, wife of Don

Gonna stand my ground, won't get turned around,
And I'll keep this world from draggin' me down;
Gonna stand my ground and I won't back down.
~Tom Petty

I read with interest the comments from others on a topic that is very close to my heart. I will receive the final diagnosis tomorrow but expect it to be Stage III, hopefully IIIa. I concluded a 35 year government career and proceeded to establishing my own consulting business. So I have those wonderful things called a pension and supplemental health insurance to augment the social health care program that is available to me in the province of Ontario. I acknowledge fully that I am in a different situation than so many of you.

Nevertheless, I'm trying to have a slightly different perspective on it because I also bring in my Christian beliefs. I live for the short and the very long term. That is, I enjoy today and take on what life presents to me with all of its joy, pain and fears. I will fight and take advantage of all of that the medical and broader health community has to offer to me. I try not to let my thoughts go over to what I call the dark side which is all of the frightening possibilities. But every day, I also will live for the life that I believe exists after this one.

Take this time to reflect on whatever your own spiritual grounding is. You may find that it gives you the strength and the direction that you need at this time.

Be Not Afraid-God is with you always
Stage IIIa

Hi,

I find you attitude refreshing & realistic.

Is quality of life better  than the quantity of life filled with surgeries & treatment.

Since being told you have melanoma, your life will never be the same.

I can only say that everyday since I was DX I feel a cloud is over my head.

I have had many recurrences & each recurrence take a toll. Each rejection from a clinical trial takes away hope.

So be sure you want to  fight the fight before going into battle.

Besides dealing with your  melanoma, you have to deal with the doctors & the beaucracy, injustices of not getting into clinical trials, mistakes made by so called medical professionals, PET/CT misread on occasion that you hope your doctor takes time to read & catches the mistake, etc.. ...

This ride to fight melanoma is not an easy ride, so be sure of your decision to fight or live the life you can without entering the world of melanoma & everything it makes you live through!

Good Luck with whatever path you take!

No One is scared of dying untill your told you only have 3 months to live..then you start thinking about how to survive and what going to make you survuve

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

Hello Flydiver,

 

 

I find myself in your same questioning situation. I too am without child or wife. My parents are gone (not from cancer) and I am wondering if I should just blow off these treatments that appear to have poor to short relative success. I am stage IIIb and wonder about quality of life going through this treatment, hold up in hospital, with a potential of such little time to remain. Additionally, how well could I “see the world” if I’m a basket case?  I suppose the film The Bucket List kind of approached this matter. After all we are all temporary.  I could sell it all and trip across the world only to end up in a worse position afterward. The study and progress of treatment for Melanoma does not seem to be making much headway, only in higher stages and I still read the percentages of making it 5 years… really? Five years? How many of those five were spent in hospital, pain, boredom??? So I wonder, (if you are still reading this board) Did you do it?? Are you out there living life? I think someone like you and I in their 40’s without a nuclear family perspective on this thing we call life is a little different.  Additionally, I am a firm believer in science and an agnostic realist so “praying it away” gives little comfort to a mind based on the reality of Melanoma and how deadly it actually is…

 

Let us know where you ended up these past few months, I know we all have to decide our own path but it would be good to learn yours.

 

Thanks!

For me, it is far better to grasp the Universe as it really is than to persist in delusion, however satisfying and reassuring. - Carl Sagan

Sorry it's been a while since my original post, but I appreciate all the replies. We are all in different situations, and I'm had to hear from you, Humorous, as it seems we have much in common. I'm stage IIIC so prognosis is less than 2 years, but I've had 2 scans since my lymph nodes were removed and both were clean. I know that could change at any time, but I find myself not thinking too much about it anymore.

While the 5-year survival at my stage is only 24%, I just figure I've got between 2 and 5 years and live my life accordingly. I had assumed I had 30 years left, but frankly was worried about what to do with all that time, and if I'd have to live with arthritis, bad knees, and Alzheimer's. How long would I have to work to ensure a comfortable retirement, and how long would the money need to last?

Problem solved. Well, sort of. Believe it or not, I'm more worried about living 20 years than I am about dying in 2. Even if I make it 10 years, have all the money I need, all the free time in the world, and plenty of friends and family to support me.

So I don't think about dying - ever. I just adjusted my timeframe to a more realistic lifespan. Yes, I went a little crazy at first. I bought a BMW roadster, took my mom and siblings on a first class trip to Machu Picchu, Peru, then gave 60% of the stock in my small software company to my staff and resigned. Turns out I was bored with it after 12 years and needed the excuse anyway. And now they're more motivated to build the business than I was, and I still get paid to sit on mymbutt all day.

No, everyone doesn't have it quite so well. Most facing cancer have a difficult struggle, especially financially, and have dependents to worry about. I guess if anyone had to get Melanoma, I was the best candidate.

I'm not saying it was the best thing that ever happened to me. I got depressed and distanced myself for a while, and kept it to myself. I stopped taking care of myself and started sleeping all day. Then one day I looked in the mirror and thought, this is not the way I want the end of my life to be. I since shared my story with everyone I know, have been getting back in shape, and have decided to make the next 2-5 years the best they can be. I've been traveling, partying, making new friends and stopped putting things off, whether I want to do them or not (after 3 years putting off cleaning out the garage I finally did it just today). Then I booked a Caribbean cruise for the end of the month.

So, if I'm still around in 5 years, I'll figure out the next 5 years then. For now, I live for today and just don't make any long term plans beyond a couple of years.

As for treatments, I'm not going to waste a minute in a clinic unless they can assure me they can extend my life without destroying the quality. I know I probably won't live as long as my friends and family, and I'm somehow ok with that. Believe it or not, that knowledge had opened new doors for me and energized me to to do more with my life, rather than sitting around waiting to see what life throws at me.

I dont know if your financial situation allows you all the same benefits, but if I had little money, I'd probably be backpacking around Europe right now. I hope you have a long life, but whatever the case, make it a good one!

Sounds like you are doing what I want to. I don't have your cash but I do have the same outlook! Thanks for the reply, enjoy life while we can....

For me, it is far better to grasp the Universe as it really is than to persist in delusion, however satisfying and reassuring. - Carl Sagan

I am Stage IIIB. I decided not to do interferon or the clinical trial. The only lymph node that was positive was the one with the tumor. All the 30+ others the surgeon removed were clean. After speaking with a radiation oncologist as well as my surgical oncologist and my local oncologist, all agreed it would be best to do the scans and watch diligently. I feel perfectly fine and didn't want to go through a year of interferon for a small chance it would help. I know exactly where you're coming from. I wish you the best with your decision.

 

Well, it's been a year now, still Stage IIIC and NED 3 scans following the surgery. Doctors can't give me any straight answers to my questions about survival rates. Averages say I had a 24% change of 5-year survival, but now I wonder if those numbers are skewed by large numbers dying in the first year, or if they include the 70-year-olds that die of natural causes.

I had a difficult time from the nerve damage caused by the axillary lymph node dissection, but I'm healthy and don't think I'll be seeing any tumors for a very long time, if at all.  I feel a little embarrassed that I may have worried a lot of people over nothing. I almost need something to go wrong just to prove I wasn't exagerating.  As bad as it sounds, I envy people with cancer's they can actually see and feel. At least they know its there and can see what direction it's moving. But I'm no longer waiting for the ball to drop.

Flydiver,

 

I am happy to hear that you are cancer free.

But don't think that your cancer cannot come back. If you read post over the years, you will find that melanoma has come back after 5, 7, 10, 15 years of being cancer free. You must live your life to the fullest but be diligent with you fu cancer follow up scans.

Good LucK,

Mary Jo

Congratulations on your one year "NEDversary"! yes I hope you have many more. There are plenty of Stage III patients who have had many NEDversaries.

There's no need obsess over survival statistics. Doctors can't predict how long you're going to live when you don't have cancer any more than they can predict it when you do have cancer. They have statstics they can refer to but these statistics often come from studies that were completed 10+ years ago. And for melanoma, it was a time when treatment options were pretty much limited to interferon. Who knows what statistics will be 10 years from now with Zelboraf and Yervoy being FDA approved. The main things to keep in mind are that cancer treatments are constantly evolving and that survivor lists are growing.

I also had an axillary lymph node dissection done in 2011 -- January, to be exact. Only one node tested positive and I had no primary. I'm still numb under my left armpit, which is where they removed the nodes from. But the numbness is dissipating. Even if I don't regain all feeling -- it's only my armpit, I'll get over it. smiley

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Well they damaged my thoracic nerve during the dissection tho wouldn't admit to it. I now have a winged scapula and can't catch a fly ball anymore. It could be worse. But as you can tell from my previous posts, I won't be doing anythIng more that further risks my health or mobility. And I'll fit in the scans, but from now on I'm not going to schedule my life around them.