my 74 year old mom dx with CC 4 wks ago
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Holly sue,
We live in East Lyme, cT and also went through Yale last summer. My mother used Dr. Caldwell and Dr. Ronald Salem for her first opinion.
I’m glad you have found Dr. Saif and are headed in the right direction.
ashley orefice
ashleyaorefice@yahoo.combtw – I’m not understanding the request for a biopsy.. a needle biopsy or a brush biopsy?? there is a difference that you may want to ask about . Feel free to email me if you want.
Good luck!HollySue that is just wonderful, yea! Did you ever think you would be in a group who cheer for chemo/radiation or surgery? But it is the RIGHT group.
I just got the book (very popular) Anti Cancer, you can look it up on our search site. It is not only wonderful it is extremely interesting.
HERE IS THE CANCER PATIENTS BILL OF RIGHTS:If I should express anger or depression,
PLEASE DONHi Hollysue1,
I’ve listed some of my favorite links below.
My Mom was diagnosed with CC with mets to the lungs at age 76. It was a real shock. My Mom was still working full time (by choice) and the diagnosis was an incidental finding. She had a bout of pleurisy and was having a CT to rule out a blood clot. You can read our story by using the search function and reading my posts under “Cherbourg”.
My Mom was treated with oxyliplatin, Gemzar, Xeloda and Nexavar. She too had a port. This was one of the best things she chose to do. Be sure and ask if the port your Mom is getting will allow “Contrast” to be used with it. Most of the new ones do but check. This made CT’s and MRI’s easier.
The last link is an excellent site to decipher the various lab tests you will encounter.
I hope these links will help. I have numerous other bookmarked links as well. I’m in the medical field (a Cytologist) and along with my Pathologist diagnosed my Mom.
My heart goes out to you. You are embarking on a hard journey but we here on the site will be with you and your Mom every step of the way. Come back here often and don’t hesitate to ask any questions you might have. Someone here will have had the experience and will know the answers or where to find them!
You are an amazing daughter and a testiment of what a wonderful Mom you have. You are doing all of the “right stuff”!!
Hugs and much love coming your way!
Pam
http://www.mayoclinic.com/health/cancer-diagnosis/HQ00379
http://www.cancer.org/docroot/home/index.asp?level=0
http://www.cancer.net/patient/Coping/Caregiving
http://www.labtestsonline.org/
Thanks to everyone for their best wishes, advice, etc… It is most appreciated. We actually were able to get an appt at yale with a specialist named Dr Saif. Although I was unable to go to that appt due to work, my mom and sis in law said that he was very compassionate, as was everyone else at the center. In one week he had her full body CT scan done, Bone scan, Biopsy scheduled for Friday, Port put in on Monday, followed by her first round of Chemo. He will be starting with Gemzar. Has anybody else out their been treated with this?? Wondering about the side effects etc…. Oh and also anyone have any suggestions on self help books relating to being a caregiver of a person with cancer?? Thanks for all of your help, it is much appreciated!!
Hi Holly Sue,
I am so sorry that you had that happen, I feel like it’s exactly the same thing that is happening to my dad. We keep trying to get him in sooner for appointments but still nothing’s coming up and we still have no concrete answers or treatment plan. But we’re still plugging away every day.This site is wonderful everyone on here is amazing, welcoming and helpful sorry you had to find it but it’s becoming an invaluable resource.
All the best to you and your mama.
Jen
Hollysue
Welcome to this site – you will find it of great benefit as you advocate for you Mum. I would also like to share my experience in the hope it may be useful for you. Like you Mum and Lainy’s husband I also got pancreatitis following an ERCP – so its quite common but its important the inflammation clears quickly as it may delay surgery and you don’t want that. Also my surgeon took a “brushing” and not a biopsy for fear that the biopsy would seed the cancer.
Keep in touch and let us know how your doing.Gerry
Hi Hollysue,
Welcome to the site, although I am sorry that you have to be here. I am sorry to hear of the lack of compassion from your mums doctors in explaining things to you all. That is most shocking indeed and is not right at all. I was my dads carer and was with him with all his meetings with doctors and specialists etc, and we never encountered anything like that.
I know that this is a tough time for you right now. All of this is not easy to deal with and having doctors with bad attitudes does not help. So please, come back here often to ask questions, post and vent if need be, and you will get a ton of support and help from us all.
My best wishes to you and your mum,
Gavin
HollySue,
I am so angry on your and your moms behalf. In fact, I feel the need to be very nasty to your doctor!Timelines are beneficial in that they show you the likely posibility, but they are not fact. Some people follow the statics and some dont. Where will your mother fall? I dont know and neither does a doctor. It is a guess. Not a fact.
Did they say where they tumor was? Are there mets? All these things can determine what type of treatment one gets. Why have they not started chemo? We have seen many people here respond well to it.
Get mad, get determined and then get another doctor. NO ONE should see a doctor that already sees them as dead. Sees them as sick, yes. Sees them as terminal, ok…but never already dead and that is what your moms doctor has decided.
Take care.
\Krishollysue…….receiving the diagnoses of CC always is shocking but, certainly a bit more sensitivity on behalf of the physicians comments would be welcome. Hang in there. Ashley is making a good point because, in our case, a biopsy was not required as all other symptoms and scan readings very sufficient for diagnoses for this cancer. Definitely, as Lainy had mentioned, you will want to be in possession of copies of everything pertaining to the diagnoses including, ct scans, physician’s report, lab results, etc. (also, keep a copy for yourself) and forward those to a physician or physicians familiar with this cancer. The members on this board always are very helpful in steering you in the right direction. I am a big proponent of 2nd, or even 3rd opinions and as Ray has mentioned, he is living proof that the predictions given simply, were not accurate.
Take a deep breath, let go of the unpleasant happenings and put on your boxing gloves.
Best wishes coming your way,
MarionDear HollySUe, we want to welcome you to our Family and happy you found us.
My husband had the same thing with the pancreas! I guess sometimes the dye from the ERCP can leak on the Pancreas and it literally damages it. His healed in about 3 weeks, just enough time to have his surgery.
With that said, I would gather all your mom’s info and look for a doctor who is very familiar with CC. Can you tell us where you live and I am sure you will be getting some responses quickly to help you find someone. In the meantime start gathering her records. Please let us know what is happening.Welcome to this site. I’m so sorry to hear about your mother.
Yes, your doctor is incompassionate ( Dr. Gloom and Doom) and please go forward with another opinion! However do NOT have the second needle biopsy as it has potential to seed the cancer. I hope your second opinion is requesting biopsy via brushings and not a needle??? A visible tumor, CA 19-9 blood results, FISH staining ( sent to Mayo) or Brush cytology are preferred methods to diagnosis this cancer INSTEAD of needle biopsies.
Where are you located?? I’m certain this site can offer a hospital where doctors are more familiar with this cancer.
Ashley
Time to go and you’ve already made the first step. get that biopsy done ASAP and head to the cancer centre. Ask and make sure they have someone who is famailiar with CC and can really help you.
I had an oncologist that told me ” You’re sicker than you think.” I aksed him how sick and his reply was” You have 6 months to live”. That was 37 months ago with great CC care and surgery. The next time he saw me he couldn’t believe his eyes.
My mom who is 74 was dx 4wks ago. She has had an MRI and an ERCP and they placed a stent in so the bile could drain. They did a biopsy at time of ERCP and it came back inconclusive, so now she has to have another needle biopsy so that there is confirmation. We have been to 3 DRs the PCP, the GI MD, and one oncologist. Not one of these Drs has sat down with her and explained anything in a compassionate way. I feel like they are dragging their feet about the biopsy which could have been done 2 wks ago when she was in the hospital after the ERCP (which caused Pancreatitis) the MD says he ordered it to be done but it wasnt. Two of the MD’s have said in a not so compassionate way that there is no hurry because this is not a treatable cancer. One actually said to my 21 year old daughter who asked if we should be getting this biopsy quicker, “Well the horse is already out of the barn, she has cancer, she is going to die” this all in front of my mom also. So I guess I am venting and also wanting to know if anyone else has experienced anything like this. It is very frustating to have to depend on MDs for appts and biopsys etc. We had called a major cancer center and they wanted a biopsy before an appt could be made. I will be calling them back and trying to get an appt again this am. Any advice would be greatly appreciated.
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