• From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

I know I should wait to talk to doctor on Monday but I feel so helpless and ignorant to this disease.  I want desperately to do and learn everything I can to help my husband.  The sad part is we went to the local doctor on Tuesday and he told my husband and I that the biopsy they performed on him came back negative for cancer.  The specialist told me but not my husband or family about the findings and after reading his reports they suspected this almost a month ago!  I go from one emotion to the next and sit here alone in my knowledge.  A part of me doesn't want Monday to arrive because I know that this will become our truth then.  I know time is of the essence and I would never miss this appointment but I do wish for the "boring" days we had only 3 short weeks ago.  Thank you for all your help and for giving me someone who I can share this with.  I've never felt so all alone.  My heart breaks for the moment that my husband learns of this fight we are taking on.  He posted an update on Facebook the other day that said "Dear Lord, I ask not for an easier life, I only ask you make me a stronger man" so I am thinking he feels it deep inside.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,223

Re: Sort of diagnosed?!?

Dear Randyswife, did you mean to say they found the biopsy "positive". You wrote negative which would be the best news. I am assuming it was positive in which case your husband and the family (this is my own belief) have a right to know. I believe your husband is issuing prayers as that is how my husband steeled his mind for what had to be. I feel it is important for him to have this time to ready himself for what ever the Doctor says on Monday. We all get anxious before an appointment and scan results. Your feelings are normal for what you are going through BUT you are far from alone, we are all here for you! We liken all of this to a roller coaster ride but I promise you that IF the news is not good but a game plan is set in place your fright will turn to fight. Please also keep in mind that we have had Miracles on this Board and your husband is no exception.  We are anxious too to hear what the ONC says. Take some deep breaths and try to be very strong. I used to  get in the car, put on Mama Mia and sing out loud until my throat hurt. Drive around for about 1/2 hour and went home feeling better!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

28 Reply by PCL1029 (edited by PCL1029 Sat, 29 Sep 2012 10:16:28)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Sort of diagnosed?!?

Hi,
You will not be alone on this journey for God is with you.
If I may, as a patient and a man like your husband, most caregivers forget one thing, Men are also human beings, and we do have emotions ,we do shed our tears in time of desperation. But generally we may purposely hide or  ignore to show them in the best ways that we could; we are also afraid of death and afraid of the uncertainty. No matter what faith we are, at the end,we, the man still have to kneel down to pray  and ask God for mercy.and I think that is exactly what your husband did. For he may know his body and condition better than others; but one thing is for sure, we, as husband, will always be grateful for our wife's love , caring and undying courage and commitment  to see us through in sickness and in health.
Don't be afraid, my friend, be calm when thing is not going your way; be strong when you know your husband is depending on you; be knowledgeable when you try to help him more. Use your time wisely, take a rest emotionally and physically when you want too,eat well  and  let this event unfold uneventfully.
Keep in touch,
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

I want nothing more than to be strong and someone my husband can lean on.  God knows he has always been there for me.  I never imagined we would be in this situation, I guess no one ever does.  I want to learn all I can and do whatever I can to beat this thing.  But mostly I want to be there every step of the way and hold his hand and be his rock. 

The "negative" test we got was a brushing that the doctor took during the ERCP.  I've had three doctors tell me not to put any faith in this test because it often gives a false negative since the brushing just scrapes the surface.  I was just upset that the doctor made a point to tell my husband the cancer test came back negative without telling him that it could be a false negative.  I want to have hope and courage and I want him to have the same but I didn't feel it was right to tell him that.  It was the doctor that had me keep this information to myself until we know more.  Anyway, that boat has sailed so we must move on.  I am getting myself ready for this doctor appointment on Monday.  I know there is no turning back.

  • From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

I can't thank you all enough.... you will never know how much I've come to depend on this board already.  Just reading your words make me stronger than I ever thought I could be.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,223

Re: Sort of diagnosed?!?

AHA! Thanks for  clarifying all of that and I do agree with you. Things are easier when everyone is told the truth/same things from the beginning. On to Monday and remember no matter what is said we are all around you! You are not alone.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • LynnD
  • LynnD
  • Senior Member
  • Offline
  • From: Lakeland Florida
  • Registered: Thu, 06 Sep 2012
  • Posts: 121

Re: Sort of diagnosed?!?

randyswife,i went through the same thing in early may when my husband had a ercp,they found his common bile duct closed tight,they put a stent in and took a biopsy,2 weeks later the results were negitive.just a month ago he was in the hospital for being yellow,they removed the stent and put a metal one in and did another biopsy,this time positive,i sorta went off on the dr and asked him why was it neg in may and positive now,he said we only did a surface biopsy,i was so upset,angry,i could just spit nails.my husband is doing alright for the most part,me on the other hand im an emotional wreck,i hide it from him,but its hard.blessings and prayers to you and your husband..((((HUGS))))  lynn

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Sort of diagnosed?!?

Hi Randyswife and Lynn....We were in a similar situation in that the brushings came back "negative." Since then I have learned that some studies suggest that the overall sensitivity of bile duct brushing and bile aspirate cytology is quite low.  Supposedly it is somewhere around 50%. The numerous postings on this site reflect these findings. Stay strong and hopeful and please continue to keep us posted.  We are with you, all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

Today I smiled.  The doctor in Cleveland wants to operate.  Randy had a full body CT done today and once the Dr reads them he will decide if Randy is able to have the surgery. 

Today I cried... when we returned home this afternoon Randy started shaking uncontrollably.  He was running a low fever of 96 degrees.  I immediately called the Dr (who called me back within 10 minutes!) and they prescribed antibiotics.  They believe his stent may be infected.  He has improved some and is sleeping peacefully now. 

I really want to thank you all for the support...

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Sort of diagnosed?!?

Randyswife....I am smiling right along with you - my fingers are crossed too.
The fact that your husband is responding to the antibiotics is the second, great, news.
Unfortunately these stent become clogged with sludge and debris and cause infections.
I wish you both to have a restful sleep; you need it too.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,223

Re: Sort of diagnosed?!?

Randyswife, I am so very proud of you as sadly, you are really getting the hang of this roller coaster ride! Glad the antibiotics are kicking in and can't wait to hear what the Doc says!!! Crossing everything I own for good news.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

Randy went and had the ultrasound endioscope a week ago Friday.  During our Doctor visit they said the only reason they would do the ultrasound is if his blood test came back positive for autoimmune pancreatisis.  When they called to schedule the ultrasound I cried tears of joy.  From what I read this would be a much better diagnosis than cancer.  Well as soon as the ultrasound was finished the doctor told me he took two biopsies and one had already come back positive with cancer in the tail of his pancreas.  We sat on this information until Monday when our regular doctor phoned with the "official" results.  Randy has a mass in the head of the pancreas and one in the tail.  He scheduled surgery for this coming Thursday.  He called it exploratory but said they would attempt to remove the tumor (s) if the could.  My question is what if they can't?

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,223

Re: Sort of diagnosed?!?

Dear Randyswife, My forte is not Pancreatic Cancer however, I think that with any surgery the surgeon never knows what he is really going to do or find until he is in the area. Unfortunately, you are going to have to play the waiting game. In the meantime I want to send my thoughts and prayers and everything good your way for a successful surgery for Randy next Thursday. Please let us know how he does and this is the time now for you to pull on your inner strength. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

39 Reply by marions (edited by marions Sun, 28 Oct 2012 03:01:20)

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Sort of diagnosed?!?

Randywife.....first and foremost fingers are crossed for Thursday's surgery.  If a Whipple surgery is performed then our Lainy has much to share with you.  For the Distal Pancreatectomy you would want to visit the John Hopkins Pancreatic Forum.  It has been in existence for many years; is informative and similar to our site, is visited by great people.
http://pathology.jhu.edu/n.web?EP=N& … CREAS_CHAT
A tidal wave of good wishes is heading your way,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Boardman, Ohio
  • Registered: Wed, 19 Sep 2012
  • Posts: 16

Re: Sort of diagnosed?!?

I am so thankful for this board, I appreciate the fact that there are people out there that unfortunately know what we are going through.  Since we were diagnosed with cc and now the mass was diagnosed in his pancreas I didn't think surgery was an option.  I am hopeful since they have decided to do surgery but also confused because it goes against anything I've heard or read so far.  Doesn't the mass mean the cancer has spread?  Or is the surgery to determine that?  I'm very hopeful and staying strong for our family... This is the only place I have to voice these fears or ask these questions that I'm sure don't have quick answers.  Actually, I think voicing these fears enables me to move them out of my head.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,223

Re: Sort of diagnosed?!?

Randyswife, YOU GOT IT! This is the best place to voice your concerns and fears! I was not sure about what the surgeon wants to do (thanks Marion) and didn't want to give wrong info so did not realize you could be looking at a Whipple. Yes, yes, I know about Mr. Whipple. As a matter of fact they DID have to remove the head of Teddy's Pancreas to get to where his CC was in the bile duct valve. No problem. They also did that to make sure the Cancer had not spread in to the Pancreas or if it did, how much. I remember the Surgeon making us a drawing, to us it looked like an abstract painting, but he said at that time that everything depended on what he found when he went in. He also said the longer he is in surgery the better, as it meant the CC had not spread or he would have had to abort the surgery. My point is they can cut in to the Pancreas. One good thing for us was that we were visiting family in Milwaukee and from Jaundice to DX to 1st surgery only took a week! We didn't have time to think, were out of town and maybe that all helped not to have a long timeline. Thank God we got the best surgeon there was at the time as 6 years ago there was not that much! Hang in, be strong we are all here and we have your back!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.