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I now have another cancer

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I've posted this in a couple of other prostate forums, so forgive me if I repeat myself.  This has all happened just within the past month.  My GP ordered a CT scan three weeks ago because my pancreatic enzymes were off.  The CT revealed a golf ball sized mass in the small bowel mesentary, which is a structure within the peritoneum that supplies blood to the small intestine.  He referred me to a gastroenterologist who informed me that this type of mass is usually carcinoid, and he referred me to a surgeon to perform a biopsy.

I just saw the surgeon on Friday and he said that where the mass is located it cannot be accessed for something like a needle biopsy (because of all the blood vessels and such) and that he would have to actually remove the mass to confirm whether or not it is malignant... also removing the affected part of the bowel in the process. He may be able to do it laproscopically, but there's a one in three chance that it may need to be open surgery.

The small bowel mesentary carcinoid is rare enough.  Typically carcinoid tumors affect the pancreas (as Arethra Franklin had), the colon, rectum or appendix. Carcinoid belongs to the general category of neuroendocrine tumors.  There are some possible non-carcinoid causes of this type of mass, however they are extremely rare, with only a few hundred cases reported. So it looks like the writing is on the wall.

Right now there is a serious complicating factor in that I have been on a high dose of prednisone for the past two months for another condition, Trochleitis, which is a rare condition of the structure that controls eye movement (it seems all I get are rare diseases... prostate cancer may have been the most "ordinary" of them). I see the neuro-ophthalmologist tomorrow and need to get from his a timeline of when I will be off the steroids and allow my natural adrenal system to recover sufficiently to undergo surgery.

The surgeon said I need to act in weeks, not months.

This is pretty scary.  I suppose if this were my first cancer I'd be freaking out. The prostate cancer was scary enough.  This week will be the second anniversary of my prostatectomy, and last year at this time I was undergoing adjuvant radiation (Aug-Oct).  I had just passed my third consecutive undetectable PSA last month, and felt it was time to move on with my life.  Of course, I am still on ADT, so will not have a truly meaningful PSA read until after all the Lupron has left my system, probably in 2020.

It seems like I've been getting blood tests every week now.  It may just be a coincidence, but when I started the prednisone I began having super hyper hot flashes, with profuse sweating and tightness around my diaphram.  I attributed it to the combination of Lupron plus steroid, and didn't really think it was anything.  In fact, I had already been scheduled for nasopharangeal surgery in three weeks to correct a bone deformity at the base of my skull that is putting pressure on my airway.  But now I've had to cancel that.  Just when I thought I was getting ahead, I get hit with this.

So far I haven't found any support groups or online forums for this type of cancer.  I thought I was handling it well, but as time passes it's starting to sink in.  With my wife's lymphoma last year this makes three cancers in three years. Pretty scary.  I don't know what might come of this, but just wanted to let my friends here know what is going on.

 

JayAur's picture
JayAur
Posts: 33
Joined: Aug 2017

  That is rough.  Good thought go out to you.  Thanks for you always being here for others.  Know that others are here for you!  

ramaka
Posts: 55
Joined: Mar 2017

Hi Rob:

I am sorry you and your family are going through this. You have always helped others out here with your time and valuable advice time to time. I am a big believer in Karma and I sincerely hope and pray you and your family experience only the best that life can offer going forward! I am sorry I do not have anything else to say other than this. Praying for your health! Thank you! Avi.

contento
Posts: 76
Joined: Jul 2017

Yes Rob sorry for your situation. You and your wife have been through so so much. My heart goes out to you. But there's no doubt your tough and I expect to see you continue to offer your advice and council in the years to come. Our thoughts and prayers are with you...contento

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

I'm really sorry to hear of this new issue, Rob.

What that mass is is still indeterminate, so I will mention at least a remote possibility that it could be what is called Peritoneal Cancer-- also very rare, and occures within the linings of the gut (literally, the peritoneum).  This mostly occures in women, since the cells involved actually are identical to ovarian cells, and when it occures in women it is initially confused with ovarian cancer itself, regardless of location. But rarely men get it also.

I would ask the surgeon if open surgery for the sectional removal might not be best from the get-go, since exploration may end up being necessary also.

Peritoneal cases are almost always initially believed to have been something else, so at least mention it to the surgeon so that it is on his mental radar going in.

I know this is massivley disappointing.  I pray that whatever it is it proves treatable and beatable.  

max

Old Salt
Posts: 720
Joined: Aug 2014

So sorry to read that. I am also sorry that I can't really offer advice on this complex development. But you are approaching it wisely and I join the others in wishing you the very best outcome.

Dwightsfight's picture
Dwightsfight
Posts: 6
Joined: May 2017

Sorry to hear of your latest news Rob, my prayers go out to you.

graycloud
Posts: 38
Joined: Jan 2018

I am so sorry for this recent diagnosis.  From what I've read here, you are a fighter.  Keep fighting!  Prayers and Love from us. 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Rob,

I am sorry for the news. I hope you get ready the soonest for the surgery to remove that mass and finally identify the culprit for peace of mind.

I saw recently a documentary of a young lady on a similar rare carcinoid case where the pancreas was involved. It took her two years of discomfort, moving from specialist to specialist that could not identify the real cause. Only after an open surgery they managed to identify cancer. The mass was removed and she followed with chemotherapy successfully.

Yes I agree with you; the occurrences are rare diseases but these got such classification because not everybody is so much concerned with symptoms (as you seem to be) to the point of investigating them in detail. Rare diseases may be prevalent in many of us without knowing that we have them. These are hereditary silent killing buggers found by chance.

My encounter with prostate cancer has changed me too. I become more attentive to health factors which have taken me to more studies and worries and tests after tests. Is this good? Yes I believe so.

I sincerely hope things resolve in your favor. Please let us know the details as you move forwards.

Thinking of you and your family.

VGama

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Dear Rob,

My very best wishes for a best outcome..............and a speedy recovery............best

Hopeful and Optimistic

fishinguy
Posts: 18
Joined: Dec 2017

Rob, sorry to hear.  Wishing you the very best of outcomes.  M ythoughts are with you and your family.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thank you everyone for your thoughts and prayers, and for your suggestions.  Dwight, I was saddened to hear of the latest development in your battle, especially after your transplant and the lengthy hospitalization that followed. Good luck going forward, though it probably does not look good right now.

Max, thank you for the suggestion.  I had a bowel resection at the cecum and open exploratory nearly forty years ago. The recovery was difficult.  This surgeon said laproscopic excision would require two days in the hospital and open surgery would be five days.  I appreciate the value of being able to look around in there, but a big part of me just says I should go with the doctor's experience on this one.  Both he and my gastroenterologist seemed to be familiar with this condition already so I think I will likely trust their judgement.

There is a peritoneal cancer forum here on CSN ... https://csn.cancer.org/forum/199 ... where I have also posted, but have only received one reply so far.  At this point I don't even know whether or not this is actually cancer.  At first, I began to research the various differentials that the radiologist had proposed, when I realized that they were all quite rare.  However, I also read that in many cases these masses are found during autopsy on those who had died from other causes... indicating that they are slow growing and many have them but are unaware of them.

The most common scenario is that the small bowel mesenteric stelate mass (which is the closest thing to a diagnosis that I have at this time) has metastasized from an unknown distant site (unlikely in my case), lymphoma, metastatic ovarian cancer, or mesothelioma.  That seems to cover the majority of cases. While peritoneal cancer is probably a possibility, I have not heard it mentioned other than here and have not read of it as a possibility. "Primary mesenteric carcenoid", along with schlerosing meserentitis, is even more rare.  Upon recommendation of another CSN member I considered going to Moffitt cancer center in Tampa to get their opinion, but again, I do not yet know if this is actually cancer, and not sure how much they would know without performing additional procedures.

Vasco, thank you for your input.  Actually I had not intended to "investigate" anything.  With the prostate cancer behind me (at least for now, as my PSA is zero) I had scheduled revision surgery for next month to correct a collapsed nasal valve that followed a septoplasty this past April.  And I was being treated by a neuro-ophthalmologist for an eye problem I've also had for many years.  He has me on prednisone which is when I started having the episodes described in my original post. 

One day on a whim it occurred to me that I should inform my primary care physician of all the stuff I had going on. He warned me to not have the nasal surgery while on steroids (this was all new to me). He drew some blood, then called me to have the bloodwork repeated at a different lab, then ordered the CT.  That was just three weeks ago.  When I saw him I thought it was to discuss my "usual" lipids and triglycerides.  Then he mentioned this stellate mass of unknown origin and said he didn't know what to make of it.

And from there the story goes on.  I am now tapering off the prednisone and hope to have the surgery scheduled for sometime next month.  Now you know almost as much as I do.  At this point, I have not yet even told my sister about it, nor my sons. Still getting up the nerve to tell them.  Thank you again everyone for your well wishes.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

As best I can recall, the response "Wow" to an incredible story began among sports commentators. "Wow" is pretty much worn out today, but your recap is still a "Wow" moment.

Your doctors have had the "peritoneal thought," and that is all that matters. (Know that the "metastatic ovarian cancer" you listed above IS the same thing as peritoneal, just the initial misdiagnosis in most cases, but I digress.)

They will research until they know what the truth is.  You are a thinking fighter, and will respond to the doctors in the best possible manner.

I was going to rehab years ago after being run over by the car. Femur in 3 peices before ortho rod was inserted, kneedcap torn off and replaced. Both shoulder blades broken, 13 rib fractures, back broken at T-9. Collapsed lung (pneumothorax) and a condition known as "flail chest." The rehab visits began after 4 months of recovery. I could hobble a few steps with a walker.

There was another guy there most days when I was there, about my same age (30).  The therapist would work on him and he would scream and cry, but his treatments did not usually last long.  He was on the far side of the treatment floor.  He left one day, and kept starring at me for some reason, which he had never done before. We had never met nor spoken.   

The therapist came over to start on me later. After a few minutes, she said "that guy across the room today asked me 'what is wrong with that guy over there' ?", meaning me.   She said she "gave him both barrels."  Said I was ejected out of a car window, and the car had rolled over me, that I was road kill, mutilated to pieces, had done two months in the hospital and then she had been coming to my house for a month more for home therapy, since at that time I could not get around.  She also said to him, "Have you ever heard him whine or scream once in here?"  She was just fed up with him, really unloaded apparantly. Lucky for her, she owned the rehab facility.

I then asked what his injury was, and she replied "Tennis elbow.  He is upset that he will miss some games."  He was not a professional, just a member of some sports club.  I never saw him again.  She said the next week that he asked to come in only when I was not there. And she said he never whined again....

Your history, Rob, teaches us all to not whine, to keep perspective. It is a priceless lesson, more important than any medical fact.

Thank you,

max

 

Grandmere409's picture
Grandmere409
Posts: 2
Joined: Aug 2018

Hi Rob, I understand the uncertainty all to well. My normal was the first time. Now my MD Anderson surgeon ask what's up with me and the rare diagnoses now. We keep them on their toes. Having faith in your doctor is a must. I've learned he knows what he's doing, and I sure don't. At my worst times I ask for prayer to get me through, and I riding by God's grace. Praying you get answers soon so you can tackle that little c. I think my first was practice for the last one. Just remember one day at a time. Too nerve wracking to look too far. Take care

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thank you Grandmere for your kind words and encouragement.  Yes, often it does seem that the first time through such an experience was only practice for the most recent.  I remember the kind of panic I was in forty years ago, and the emotional turmoil.  I felt sure I was going to die.  But I did not, and went on to meet a wonderfulwoman with whom we produced two wonderful adult sons.  Life is a journey!

-----------------------

Max... Wow, just wow.  That's quite a story you have there also!  I know when flesh meets steel it is - as they say, not a pretty picture.  I can't imagine what that must have been like, and I'm sure you realize that you are lucky to be alive and count every day as a blessing.  And then your lymphoma, and PCa... and I'm sure there are untold stories in there as well.

I too had an encounter with a truck, thirteen years ago... in August of course.  I hate August. It's always been when everything bad happens.  That truck put me in a hospital bed for three months... then a wheelchair, walker, crutches for about eight months, then a cane for another year or so. Still wear orthotics and at times a brace.

No dramatic tales from PT, but I do know different folks have differing perceptions of pain. When I was in the ER they asked me to rank my pain from zero to ten, with ten being the worst I could imagine.  I remembered waking up from that adbominal surgery long ago, and that was my ten. So I said "four".  FOUR... after a truck had crushed my leg.  When they began to cut off my trousers, I screamed and they gave me a shot of dilauded.

And we hear people who rank their pain as eleven. Why even say one to ten? There is no such thing as 110%.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Dear Rob, I’ve been on a bit of vacation from this board to give my psyche a break from all/most things cancer. While I’m a bit late to say this, I am so sorry about your latest diagnosis. I’ve always appreciated what you write and wish that I had sage words to direct your way in gratitude for what you give on this board. I will say a prayer for both you and your wife. Also sending a virtual hug! 

Mary

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

S **** ,, 

Well Rob Lee I have no words to add to all of the dialog that preeceds thiws post,, just some chit chat that you and i have had over the past few months.. I am jelous of your PSA scores ,, i got mine down to 7 amonth ago, but it has gone up to 20 on my last lab,, of course this is a long way from the peak of 550 in January of 2017.. So maybe if i keep on this medication i'll be able to match your 0 score.. I had an abdominal scan a month or so ago and it looked clean,, so i guess all of my metistaces is all in the bones only so thats good.. I miss you in the chat room so come on back and keep us straight.. 

i've sold my trailer and boat, so I guess i won't be comming to FL, but i hope we can get together some time and go fishing and tell off shore stories.. love and later gater, and keep strong..

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