Topic: Still in shock...

Hello Everyone!  It's been a while since I've posted and wanted to get this ordeal off of my mind.  Somehow I feel that if I do this...I can begin some positive thinking!  My husband had his right portal vein embolism May 16th for the large tumor in the right lobe of his liver.  Cat scan on June 16th showed that cc had spread to another lymph node, enlarged the one already involved, and also had spread to a few of the bile ducts outside of his liver.  The left lobe had not reached the size they had wanted but felt they should proceed asap with the resection.  June 26th was the day we thought would give us hope on getting a handle on this horrible disease.  After three hours in surgery the doctors called me in to state that that there was a hard "gravel" like tumor encasing three structures outside of the liver.  The doctors stated he tried for two hours trying to find a way to remove the tumor surrounding the structures but the tumor was so hard and he felt continuing to try would damage the structures and therefor the surgery ceased.  Needless to say I was too upset that I'm not sure that I had asked all the right questions nor am I sure I actually heard what he said.  Both doctors seemed as upset as I was.  My husband is doing better each day, healing, but needless to say we both are scared and upset about the whole thing.  The original plan was to begin radiation with chemo (gemzar) after he had healed from his surgery.  When my sister-in-law asked him if this was still the plan the doctor stated that he wasn't sure at this point the radiation would be beneficial but he wanted us to have hope and pursue this option anyway.  He scheduled us for a follow up appointment to have the staples removed and an appointment with the oncology radiologist (we have had one consult with him already) on the same day.  The doctor stated he had never seen anything like the tumor that has encased the three structures before and has been doing this type of surgery for 25 years.  I've researched the liver to find pictures of outer structures of the liver and have only found the bile duct outside of the liver which branches off.  Excuse me if I seem uninformed, would this happen to be the structures he is speaking about?  I feel absolutely silly not having a good understanding or giip on this!  Our plan is to take all the radiation treatments that we have read about with us to the appointment with the oncologist radiologist and make him go through the list with us explaining why/why not each would be an option for my husband.  I also wanted to ask him about the latest on the two medications gemzar and "something" (can't think of the other) posted here.  I'm having difficulty understanding how radiation works (probably because I need detailed specifics).  On the one hand I understand that radiation can shrink tumors and damage cancer cells.  Chemo can damage cancer cells as well as kill cancer cells (right?).  With all of this said, I just don't get why the *@!! there isn't a more positive outlook on cc!  I'm sure it's because "type" of cancer hasn't responded well to what we have on the market at this time...right?  If cancer cells are killed...why do they spread?  Sorry...I'm a bit confused at this point in wrapping my mind around this entire beast! 

On a better note, anyone going for treatment at Cleveland Clinic should ask their social worker to get them on a list to stay at Hope Lodge (American Cancer Society).  It's a beautiful place...and it's free.  Once your in you can stay for as long as you need/want!  They have everything there!  For me it was my first time socializing with others in person who are experiencing cancer.  I have to say it was a beautiful experience. 

You are all in my prayers....

Karen

Re: Still in shock...

Karen I am so very sorry to hear your disturbing news. I am not sure how far they can go today with cyber knife but it is truly a miracle.   Teddy had it in December and it worked beautifully. Problem is as I say, not sure what all they can use it on but you might want to mention it to the Oncologist. You should also make a list of your questions as you go along then present them to the Oncologist. We would all like to know why they don't step up the research on CC. Last Fall there was a Cancer Special on TV where one man donated 25Mil.
All cancers were mentioned throughout the 2hours except for CC!  You see, this is why we are an elite bunch! Take a deep breath and follow your gut feelings. Please keep us informed of the progress.

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.

Re: Still in shock...

OK...so today my husband and I marched our fanny's into his appt. with the surgeions to have his staples removed with a list of questions.  All went well...questions answered to clarify/confirm understanding of the resection that was not to be.  The tumor encasing the three "things" outside of the liver were the bile duct, the hepatic artery, and the portal vein.  Could not pursue the resection because they could not get at the bile duct to complete the work needed outside of the liver for the resection to be successful.  Intrahepatic and extrahepatic cancer.  Surgery team relinquished us back to the on-cologist but said if we felt we needed to talk to them about anything in person or over the phone to just call. 

Next the oncologist came in (love the guys attitude)...we had three pages of questions for him and he answered each and every one!  Found out that there are actually two tumors in the right lobe, 1 = 5"x7" and the other is 4"x4".  He thought that direct radiation would be the plan until I brought up the other treatments...to include SIR-SPHERES & theraspheres (which Cleveland Clinic does do).  He also wants to pursue chemotherapy for 6 months after radiation.  He mentioned Gemzar as the drug he would choose best for my husband.  I then informed him of the study regarding using Gemzar and Cisplatin to which he smiled and stated he was aware of that was in agreement with this if my husband felt he wanted this more agressive treatment (2 vs 1 drug).  He walks out and discusses what we discussed with the internventional radiologist and his team. 

Interventional radiologist and team walks in stating there was a minor disagreement and discussed using therashperes to treat the tumors in the right lobe and schedule an appointment with another radiologist to treat the tumors outside of the liver in other ways.  He also discussed SIR-Spheres as well and noted they would be completing their first procedure using SIR-Spheres next week and if that is what we wanted...he would listen.  He did point out the differences and the increased risk of SIR-Spheres for my husbands case.  Also informed about the Clinic's needed Board Approval & then FDA approval but has not ran into too much difficulty in getting the procedure/drug approved by both.  Found out today that my husband now has a lesion on the left lower rib!  So the thought is that the oncology radiologist will treat the tumor encasing the bile cut/portal vein/hepatic artery along with the two lymph nodes, if possible, and the lesion on the rib.

Tomorrow we have an appointment with the radiology oncologist to discuss treatment plans for the extrahepactic tumors/lesions. 

I've read some of the previous postings about theraspheres and some difficulty's with the insurance company's approving the procedure.  One discussion noted Cigna's position with a link but when I clicked on the link in the discussion I got the good old "page not found" signal.  I'll call our case worker at Cigna tomorrow and ask her. 

FYI...after discussing our latest nutritional journey (1 week as vegans) with the oncologist...we've decided to again enjoy, although in moderation, the wonderful American diet!  I did and do enjoy alot of the receipes we had tried and will continue many...but the diet was decreasing my husbands appitite (already lost 20 lbs) and depressing him which wasn't good for his moral.  So...we enjoyed a moderate mid afternoon dinner at Olive Garden!  It's funny...before the diet we could have eaten everything on our plates...today we only ate half of our meals before filling fully satisfied.  After eating...we both began to feel a bit sick to our stomach's.  Probably shocked our systems a bit with the change.  That only lasted 2 hours but it was well worth the taste of that yummy grilled salmon!

Keeping you all in my thoughts & prayers....

Karen

Re: Still in shock...

Karen,
I too bring pages of questions and research to my doctor. I too dont always understand what the doctors are saying because I am in shock or the news is bad and I stop listening.

Good luck with the variety of treatments. Having a positive doctor is important. If they see you as a living, not dying patient it is easier to believe and fight the battle.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Still in shock...

Hi Karen. If I was in a fight I sure would want you and your doctors in my corner. Not extremely happy  about the diagnosis but it sounds like you have some wonderful doctors working with you. We certainly hope and pray for the best and keep the attitudes going. Not sure if the Vegan way is for everyone.
We found out that Soy milk was making Teddy's life miserable  and mine if you know what I mean. He went off it a week ago and is feeling much better. One has to kind of hunt and peck at everything to find their own niche. I know you will keep us posted . Oh, Teddy has CIGNA and so fare we have not had a problem with anything, even when everything hit the fan and we were out of town.  Good luck.

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.

Re: Still in shock...

Karen,
What about microspheres? Another discussion board member told me about it. Dr. Andrew Kennedy in Cary, North Carolina. It was going to be my 67 year old mother's next plan of action for her CC diagnosis last month. However- good news at the Mayo last week as we learned they are going to consider her for transplant. This is a roller coaster but you always need to have Plan B, C, D waiting to go. I'm not sure about insurance for any of the 'sphere' treatment. However, I asked the transplant surgeon at the Mayo about microspheres added into the protocol and she said no, but that it was a good (not a cure)  option should the transplant not come to fruition for my mother.

Re: Still in shock...

Kris..Lainy...Ashley...

Thanks for the comments and support!  Appt. yesturday went well...lets say I'm not impressed with the Dr. as I felt he is the professional and should informing us of everything...instead of letting me pull it out of him!  He offered direct radiation...and stated "this is not a curitive disease" too many times during our session...I kept reminding him that we are fully aware of this...GEEZ!  Oh well I won't go on and on about my issues with this particular Dr.  In the end...he stated he would do whatever the oncologist would allow him to do...I had to pull the cyberknife procedure out of him...lol!  I asked him if I should call the oncologist to let him know what was discussed during our visit...he says "yes".  This pissed me off so when I got home I called the oncologist and the interventional radiologist offices...lol...I got a call back immediately from both!  Actually the interventional radiologist called me three times to talk about a plan...and inform me of his discussion with the Dr. we had seen yesturday.  I'll spare you all of the little detailed conversations.  So the plan is as of yesturday at 6pm....Monday morning the two radiologist are going to meet early to plan asap to start Cyberknife since my husband's first appointment for Theraspheres isn't until August 11th.  So...Cyberknife for extahepatic tumors etc. first...then immediately following or asap will be the Therasphere Therapy.  I will be getting a call on Monday...per the interventional radiologist.  The oncologist is going to schedule a CT of the spine (due to pain my husband is experiencing) and a complete CT of everything else...Chest and Abdomin area's.  I told him the Dr. we had seen yesturday made a comment during the exam that he felt a lymph node under my husband's right arm pit.  I don't know what that means but he said it out loud and he said he wasn't concerned...he should know better than to make a comment out loud like that if he had no concerns in front of a cancer patient and his wife...it caused a bit of a new panic as does each new area that is found.  I do have to admit though I probably focused more on the first part of the comment and let the "I've no concerns" part go by the wayside.  My husband reminded me that although we seem to have a plan now for treatments...the plan could change.  He is right...it's hard finding the right mindset to be in to keep some sort of sanity at all times....

Your all in our thoughts and prayers....Karen & Russ 

PS...Please pray for my nephew, Cliff who was in a terrible work related accident yesturday....

Re: Still in shock...

Karen;
Prayers coming your way for you, Russ and your nephew Cliff.  Take care and
God Bless,
Jamie

Re: Still in shock...

Karen,

Way to advocate! Congrats! I wonder if that is what the scripture that says, "Be angry but sin not" had in mind. I think we really make our point when our anger is justified, directed, we know what we want, and we control the anger. It also helps when what we want is for someone other than ourselves.
I am praying for you and your family.
Louise smile

Re: Still in shock...

Karen,
I swear I feel your pain...Having to be an advocate and fight the doctors is one thing you should not have to deal with.

Blah, blah,blah goes the doctors. Yes this disease isnt usually cured. But it sometimes is and never is completely different than rarely. My doctor and I believe that it is worth fighting for that slim chance and we are going full force to conquer it. Every oncologist I have talked to (4 of them) believe the same thing. Fight until the war is over.

I hate when doctors are too negative. I believe in being realistic, but not hopeless. I wish I could go and yell at that doctor....but at least it sounds like the other doctors are on the same page and are willing to be warriors with you.

Best of luck on cyberknife.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope