Result of Pet and Blood Test for my Hubby- He had whipples in Aug 2009
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Hi,Phil.
I think , base on the inconclusive PET and MRI report,the bilary surgeon concluded that he did not have enough evidence to rule out or confirm the recurrence of the CC. Therefore he opted for the “observation approach” which is MRI with contrast or PET/CT in 3 month and see him again.I think nothing is wrong with that approach and if I were your husband,I will take it as a good sign at this point of the prognosis of the disease.
God bless.Hi Phil. This is one of the harest part of dealing with CC, the uncertainty of it all.
Lesion on the liver are very common among everyone with CC or not. My daughter was just told she has lesions but there is nothing wrong. I think that because the cells are so small the Surgeon cannot give you a solid answer, this happens as well. My Teddy had a Whipple and his CC returned 3 years later. I am trying to remember if Gerard had a Whipple or are they talking about doing one down the road? Know what? Let me go answer your email! Hang in there and be strong Phil! We are all here for you.Phil…you have to digest much info. So sorry. Please, try not to be depressed. Phil, I don’t believe that the physician has given up on your husband rather, I believe he is not able to give you a definite answer. Scans and MRI’s have not been perfected to the point where a microscopic cell can be detected rather, only in surgery when the doctor is able to see (with his/her eyes) the area of concern can he/be for sure to know of what he/she is observing. I would suspect that given the nature of this disease physicians will be skeptical about anything questionable showing on scans. And, the only way to confirm the suspicion is to duplicate the tests in a specific time. Tumor markers on it
Update on my husband after the MRI and the second opnion 9 June 2011
We had an MRI on Tuesday 7/6/11, the report was sent to our Oncologist, who sent us a copy of the report stating that there was no definite lesions. Note prior to the MRI, the PET scan showed a solitary periportal hypermetabolic abnormality suspicious for tumour recurrence. However the MRI report mentions that there are lesions on the liver and this could be benign. We are totally confused.
On the 9/6/11 we went for the second opinion, I must say the bedside manner of this Biliary Surgeon was really good but the prognosis similar to the first one. He said that with extrahepatic CC they give the patient one good operation
Hi Marions, thanks so much I do like the “Caregiver’s Bill of Right (CBOR) It does become a bit difficult at times with my 3 young sons, but I am trying to exercise this (CBOR). Now I am re-assured after reading about your husband that it is normal for my husband to be overwhelmed by his condition. Tomorrow is the MRI and on Thursday is the second opinion. I am being positive and will post after my visit on Thursday. You see this site makes me smile, as there is so much warmth and kindness. Thank you all and Godbless Pru
Pru…..It is not uncommon for the patient to feel overwhelmed by being ill and feeling as if life is out of control. And only too often it is the spouse taken on the enormous role of keeping things in control. Amazing the strenghts we can muster, isn’t it. My husband gave advise to many including, his collegues, he was a successful attorney and held a degree in psychology. And yet, when his illness took over our life he relied on me to educate and make decisions for us all.
I also would like to share something with you:Ever so often it might be helpful to re-post the Caregiver’s Bill of Right. I thought this to be one of those occasions:
Support for caregiversI have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for just as he/she was healthy. I know that I do everything that I reasonably can do for this person. I have he right to do some things for myself.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn
Thanks once again to both Lainy and PCL. I will be going to my GP tomorrow and will mention the anti-depressant.
GodblessHi,Phil,
You are welcome.
All the people on this board,Lainy,Marion ,Gavin and others,just to name a few,
are caretakers or patients themselves; We all went thru the situations.Thanks to the founder (Stacey)of this CC web sites who had the vision to set this site up for all those around the world who suffer or will suffer from this disease.Without them,I may not be the same with regard to my attitude toward this disease.They are the pioneers of encouragement ,comfort and knowledge of CC.
email me at anytime,bring a digital recorder on 6/9;ask for permission first;American doctors,especially the younger generation of doctors will not mind.
God bless
By the way ,ask your husband’s GP to prescribe an anti-depressant for him if the doctor feels ok for that;it will help him as well as you,(that is tell him if he feels better,the entire family will feel better and he may gain some weight because of the benefit of the side effect of anti-depressants.).Pru, just one thing here…….the fact that your husband doesn’t want to read about CC is normal. Teddy NEVER came on this board as his mind just would not take it. I did all the research and all the “footwork” for the whole time. I became his “medical” secretary, if you will. #1 I am a take control person (surprise everyone?) #2 I didn’t want him to have to think about anything but staying in a good mental place.
Honestly I felt that he had the CC, the very least I can do is be the best advocate I can be. You have more on your plate with 3 little boys so it is harder for you but just do the best you can do and you will get through this. The research eases up wish I could say so does the worry but it becomes a way of life and we get through it by being strong! Hugs to you, girl! You can do it!PCL, I did read your case study – very inspiring. I can take a tip of two for my husband. Thanks for all your feedback.
Godbless
PhilElaine (Lainy) and PCL, Many thanks for all your valuable information. I am extremely thankful. I cannot tell you how pleased I am that I am going to the Specialist with some important Q’s that I need answered with your assistance.
PCL, hope you are doing ok, you sound more like a doctor than a patient. I have still not found the “RFA-a case study of yourself” you did mention under the “radiation forum”, I will look for it. You seem so positive and I think this will pull you through. All the best to you, will say a special prayer for you. Thanks for all the handy hints. I will keep you posted after all the appointments.
I was so fearful and worried but the CC foundation has given me the strength to keep going on. Elaine (Lainy) and PCL thanks once again. I wish my husband can e-mail you PCL. At the moment he is very depressed. He does not do any research. I do all the research for him. He is always in Church, hopefully there may be a miracle.
Elaine(Lainy), you are my guardian angel. Thank you so much
Phil (Pru)Hi,Phil.
Thanks for your compliment. I am just a patient like your husband ,we are in the same boat.Your husband has ductal CC and I have the ICC in the later part of the same year 2009. If you like please read “RFA-a case study of myself” under the “radiation forum” on this web site. I think it may be of some insight for your husband’s case.
In addition to that,here is what I will suggest to you .
1. Make sure the MRI that will be done is” MRI with CONTRAST”on June 7.
It will give a better picture of the internal organs than without.
The MRCP you mentioned is a noninvasive technique for evaluating the bile ducts (eg. any obstruction or dilatation of the bile ducts)
2.For surgical consultation with that biliary surgeon; ask him whether surgery is possible,that is-
1. Is it resectable or unresectable?(surgical consultation).
You mentioned the hot spot is near the portal” duct”in or close to the portal vein of the liver,but which side of the liver,left or right? Is it located inside the liver or just outside the liver? It makes a difference in treatment plans.
Ask the biliary surgeon to explain it to you ,draw you a picture where the hot spot is? explain why or why not resectable?
2. if not, what are the options? embolization?PDT?SBRT? systemic chemo?
and may be of the most interest to you ,from a surgeon’s point of view from Mayo, Is your husband qualify for ” liver transplant” under Mayo’s criteria? and if so, how will he become one locally or must be needed to be done in U.S.
3.Ask the surgeon about his/her opinions to compare on the benefits of additional radiation and /or systemic chemo treatment specific to your husband’s situation.(eg.base on the location of the hot spot,which option is better ? Radiation like PDT ,SBRT? or chemo? or clinical trials or just observation only and MRI or PET/CT in 2 months?
By the way CA19-9 increased from 200 to 356 is not a good trend but not indicative of a bad situation either. In the meantime,just wait till 6/9 and relax.
I learn one thing as a patient,really there is not much I can do except keep on learning about CC,helping myself as well as helping others and trying to enjoy the good days and preparing for the bad days. Don’t worry,my friend,God will never give us anything that we cannot handle.And with His grace ,He will always give us a way out.
God bless.Hello Dear Phil (Pru), You won’t believe this but you are doing everything exactly right, getting that second opinion. I can only tell you what Teddy and I did after his Whipple and the return of CC to where his dudenum used to be. On the first return we did one course of radiation to bring down the size then Cyber Knife. On the second return we were told no more could be done. They would do chemo IF we wanted. We asked the ONC how much time it would buy (of course we really don’t know time) and when he said maybe a month we opted to let nature take its course. Not sure about the diet, we just were not in to that and felt it was too late for diet. I guess it can always help, if you feel strongly about it. Perhaps PCL can help, he is excellent and maybe more members will see this, this time. I hope the boys are doing well and that Gerard is keeping up his spirit. You sound awesome. You sound strong! I am very proud of you! Love and hugs coming to you all.
Update on my husband Gerry, he had a blood test and PET Scan on 23 May 2011 because his CA19-9 has been increasing, currently (356) the trend is no good according to the doctors and he also keeps experiencing nausea every morning. His LFT’s are fine all in the normal range. The Oncologist said the PET showed a suspicious hot spot near the portal duct of the liver that is close to the portal liver vein. Apparently it is still not clear if it is 100% malignant. The Oncologist met with the Surgeons and they are not prepared to operate right now.
What can I do at this point in time to make sure the cancer does not spread,note he had whipples in August 2009 for CC the oncologist is not too sure that chemo or radiation will assist.
I am going for a second opinion to a Biliary surgeon who worked in the Mayo Hospital, and now works in Australia
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