To the one(s) left behind

6monthsandcounting

My name is Ron.  I was diagnosed on July 27th 2017 after a scheduled endoscopy to determine what was causing my difficulty in swallowing. Upon waking up from anesthesia was told I had a large obvious cancerous tumor that that wouldn't even allow the scope complete entry. CT confirmed 10 cm tumor upper esophagus with mets to lymph and lung. Prognosis 6 mos or less.

Oncologist referred me to radiologist for palliative treatment to aid in swallowing.  10 treatments of radiation, and was referred to hospice for palliative care.  Was not a candidate for surgery, nor was I interested.  I'd already become aware of the statistical outcomes.

The radiation treatments seemed to have worked, as I am now able to swallow without difficulty and actually feel pretty good.  I am taking dexamethasone which I was told would increase my appetite (it definately has) however, was advised the dex would probably be a short term benefit.

My question is to anyone who relates to someone they lost who seemingly appeared to be getting better even though the doctors and tests indicated otherwise.  The situation seems so strange to me since being so sick and weak to now actually gaining weight and feeling ok.

I guess what I'm wanting to hear is, "Oh yeah, thats what happened to my dad and he died 3 months later." or "Yes, that's what happened to my husband and he's still going strong."

I know every situation is different and all I'm looking for is a little clarification as to what I may expect, from people who have experienced this.

LorettaMarshall

Ron~There are stats for EC & there R those that beat those odds!

Dear Ron ~

The first thing I would probably say is “stop the count down and enjoy” the place you are in right now.   None of us here have a “cancer countdown calendar!” 

Although we are all aware of what Stage IV Esophageal Cancer is all about, there isn’t a uniform time line that is “set in concrete.”  Now to be honest, there are those who do not make it very long after they’ve been diagnosed.  That’s the nature of this particular beast.  No the stats are not good, but you’re not a statistic YET.  Some Stage IVs will beat the odds and live for years.  I was friends with a Stage IV Esophageal cancer patient who lived for 6 years after her diagnosis.  Except for her difficulty in swallowing, she fared well for a long time.  Sometimes, I even wondered if she had been misdiagnosed.  But she was a doctor herself, and had sought opinions from more than one of her colleagues.  She lived here in my own hometown, although we first met on this very link.  She was an obstetrician with her own private practice.  Eventually, she would close her practice, and instead chose to work at two hospitals here in the area.  Only in the last couple of years, she was just too fatigued to keep up her regular schedules of practice between Maryview Hospital in Portsmouth, and DePaul Hospital in Norfolk.  She had a good quality of life for a very long time.  Yes, there were times of exhaustion due to chemo, but she was able to adjust her work schedule accordingly.  Her cancer eventually spread to her Pancreas, but I say all that to say that it was “years” before she said of it all, “Enough is enough.”  Her saying was always, “IT IS WHAT IT IS!” 

She only had palliative treatments of chemo and radiation and was not a candidate for surgery.  She just passed away a couple of weeks ago.  (October 2017).    So only the Lord knows how long you can and will live with this diagnosis.  I know the stats deal in “averages” for certain diagnoses, but the “Great Physician” has the final say. 

We have a miracle who writes here as “DeathorGlory” who would encourage you to enjoy your improved condition.  Ed is a miracle, and he will tell you his own story. 

As for me, I’m on this board because of my familiarity with Esophageal Cancer since my husband is an EC survivor.  But as for me personally, in November of 2012, I went into the Emergency room thinking I had a hernia, and two hours later my CT scan, said Peritoneal Carcinomatosis.  That’s a Stage IV diagnosis.  A second opinion at the University of Pittsburgh Medical center would include a PET scan and exploratory surgery.  There it was discovered that the cancer most likely was originally in my ovaries before spreading to the abdominal cavity.  So Cytoreductive Surgery was performed in July of 2013, after a 6-regimen series of chemotherapy.  Then targeted radiation in 2014, and more chemo in 2015 and again in 2016.  Now I’m facing another decision as to what kind of treatments “I wish to pursue.”  That’s still a matter of prayer, but my quality of life is still so good at this point, that I am not yet in a count-down mode, although there will be a time when I say, “Enough is enough.” 

The bottom line is I could have died in 3 months, or even shorter after my diagnosis back in November of 2012, but by the grace of God, I’m still here.  Yes, it’s not all been “peaches and cream”, but the quality of life in between has been worth the struggle thus far.  It’s been very difficult at times. 

So that’s my best advice.  There are Stage IVs that have beaten the odds by a long shot.  You just may be one of them.  Sorry to meet under these circumstances, but usually all of us on this board have a mutual understanding about how cancer changes our lives, and the struggles we encounter along the way. 

Being a firm believer in Psalm 139, my days are known only to God, but if I woke up each day and started another countdown, I would never have another moment’s peace.  I’m firmly convinced that I will not live one day longer, or die one day sooner than my allotted time on this earth.  God has already given me years more than the stats indicated.  He just may do the same for you.  He alone knows the number of our days! 

So if I were you, I would say, may you enjoy the warmth of the autumn sun and the gentle winds be at your back as your journey on for what might be a long time of “feeling fine” before you have to make other choices.  That’s what I intend to do.    

Love & prayers,

Loretta & wife of William who is now in his 15^th year of survival of Stage III Esophageal Cancer (T3N1M0)

Deathorglory

Hello Ron

Hello Ron,

My own case has parallels with yours, but also some differences.  I'll share and just let you draw whatever you will from it.  My 1st time with EC, I was stage III.  I had chemo/radiation, surgery and then bonus chemo.  I had a "complete response" and thought I was done with it.  A couple of years later I had a recurrence.  It was in my lung.  I was stage IV and was given 7-8 months ("some people live a couple of months longer, some live a couple of months less, but figure on 7-8 months").  Surgery and radiation weren't options.  I was offered chemo and a clinical trial.  Then my HER2/NEU results came back and I was HER2+.  Herceptin had just been approved a few months prior for metastatic EC and I was offered that instead of the clinical trial.  PLEASE tell me that you've been tested.  Even now, some folks' doctors miss this.  

So I was prescribed 12 biweekly rounds of folfox and weekly herceptin.  Folfox is an especially brutal chemo.  The oxaliplatin in it is really rough stuff.  Most people don't make it through 12 rounds.  My oncologist said most folks stop after 8 or 9.  I found out why.  I made it through all 12 rounds, but by the end literally everyone who knew me (wife, mother, sisters, etc...) thought I was going to die and soon (right on schedule with the 7-8 months prognosis).  I was a train wreck (I'll spare you the details), but what it actually was was the chemo & herceptin doing their jobs wonderfully.  It was just the side effects that had me so beaten down.  After I stopped the folfox, I slowly started looking/feeling better.  And I was testing clean of cancer.  

Next week is 6 years since I was given 7-8 months.  I'm still testing clean (except for a nodule that's popped up on my lung recently).  My quality of life has improved from "death's door" to mostly pretty good.  I suggest that you enjoy the living hell out of this time while you're feeling well & strong.  Hopefully it lasts quite a while.  Don't focus on the countdown, focus on enjoying your family, friends & life.  There'll be time enough for a countdown later.

Best wishes,

Ed

IMODad

My father had an initial

My father had an initial diagnosis of vocal cord cancer, removed by radiation in his late 50's. 9 years later he had a tumor in his larynx. He had a full neck dissection and tracheotomy. Complicated by prior radiation tissue damage. Shortly after, we found a knot on one of the lymph nodes that had been left behind.. and a very large tumor that eventually blocked his esophagus. His doctor locally threw him by the wayside, the oncology office basically told him they wouldn't treat him (already met top dose they could do of radiation) and literally asked do you want quality or quantity and basically told him not to expect either - 0% and really just to get his affairs in order. We did get him in to Johns Hopkins for a surgical consult, for which he was not a candidate either. From there this physician sent him to a great radiation oncologist and they started him on 5 weeks, 5 days a week, twice a day high dose radiation treatments - 30% chance max. At the end of treatment, he had clear scans. He was tired throughout the process, but he was still functionally getting out and enjoying life. 

Dad did pass later of a complication caused by an oops by another procedure to open his esophagus. They nicked something internally while performing a rendevous procedure, causing a GI bleed, and other complications. He was 71. I honestly believe he would have been on of these from death's door to miraculous recovery stories if it had not been for that. 

He lived another 2 years from the time they told us not to expect much of any time frame. He was always a beautifully stubborn man.

My uncle, also had head and neck cancer lived I believe almost 5 years and he was a rebel against the doctor in every form and continued to smoke until the day he passed. He had numbered his days and said the heck with it, I'm going to do what I want if there is nothing I can do to change it. 

I have a friend who was recently given 6 months. He is about 3 in now I believe and he has been caught on the roof stringing Christmas lights and taking on some challenging hikes never slowing down except for the occasional tired day. I'd like to think he's going to give the time frame a lewd gesture in defiance as well.

Forget the timing, don't number your days. None of us can accurately anyway. Be beautifully stubborn. Do the things you've dreamed to do. Enjoy your family.