Newly diagnosed Mother
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John:
My now 64 year old husband was diagnosed three years ago an in March of ’08 had a resection where they took out 3/4’s of his liver and gall bladder. In Nov of ’09 he presented with Jaundice. His then oncologist told him that there was nothing they could do and that Radiation and Chemo would be of no use, that he should just go home and that in 6 months he would be dead.
I did not accept that and told him to pack a bag, we were seeking other opinoins. We went to Marshfield first, and one of their oncologists agreed that although the tumor was inoperable (it involved the hepatic artery) she disagreed with the no radiation/no chemo. We then went to see his original surgeon and she also agree with the inoperable, but stated that with Tom’s fight and with my fight, if anyone could possibly beat this it would be us. We then went to the Vince Lombardi Cancer Center in Green Bay and met with the Radiation and Oncologist there. After 28 radiation treatments and then a few rounds of oral chemo (Xleoda) and about 4 rounds of IV Chemo (Gezmar and Cisplation) Tom is still here some 20 months later.
You can choose to listen to your Mom’s doctors or you can get on your fighting gear and get your mom to other doctors who are willing to take a chance that there IS something that they can do. And never forget the power of prayers! If we had listened to Tom’s ‘then’ oncologist, and given up, I firmly believe that Yes, he would be dead by now. Instead we got on our fighting gear and gave it all we had. Has it been tough? Heck Yeah…. Would I do it over again? Yes, in a heartbeat.
We have been through so much these past three years, but I would not trade it for the world. As Tom’s caretaker, there have been times when I only wanted it to be over for his sake. But now that we are through the worst (those 6 months…waiting for the end) part of the journey…we are glad that we did not take ‘No’ for an answer….instead we fought back and found doctors that at least were willing to give us hope, and doctors that took a chance…because in the end that is all we wanted…someone to give us a glimmer of hope and it has turned out way better than his current oncologist ever thought it would.
I know that eventually CC will take Tom from me and his family, but meanwhile we continue to build memories that will be forever dear to me. I will live out my life knowing that I did everything in my power to enable this man that I love to live his life to the fullest, to share in the joy that he brings to so many people.
Rule number one: Never take NO for an answer
Rule number two: Find doctors that are willing to take a chance on treating your mom.
Rule number three: Pray, pray and pray some more
Rule number three: Stand by your mom, be there for her, give her help when she needs it, just hold her hand at other times. Let her know that you love her.
Rule number four: Be strong and go with your mom to her appointments, ask those questions about what can they try, what can they do. What options are there. Have they ever treated anyone with CC. If not, can they recommend someone who has treated CC, or can they tap into someone with experience with CC.I hope these words help you in your journey with your mom.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretHi John
Welcome to this wonderful site and all the amazing people on here. As Lainy has said getting another opinion is a good idea, or even a couple more.
My mother was diagnosed Feb 2010 aged 77 and was basically told that nothing could be done as it was inoperable (she has a Klatskin tumour). We went to another surgeon who did not hold out much hope for her future. So we tried abroad and they also said that it was inoperable, but only just, and to try chemotherapy as just a little shrinkage might make the difference.
So Mum went through 3 months of gem/cis with very few side effects, and although there was no shrinkage there was also no growth. So we see that as a positive and she has been living her life as normally as possible.She last had her plastic stent changed 1st June 2010 (very rare for it to last this long so again we see this as a positive), and apart from getting tired more easily she looks and feels well.
As I am sure other people will tell you no-one is born with an expiration date, so do seek other opinions, get as well-informed as you can about cc and keep living your lives.
Most of the doctors and professionals we have met have been incredibly pessimistic about mum’s future but here we 14 months later and still going strong.
I wish you and your mum the best.
Jemima
John, welcome to our wonderful family. We heartily believe in 2nd and 3rd opinions. We do have a listing of Hospitals that seem to be our members favorites and most productive in treating CC. That would be on the Home page where you found Introductions. We have had patients who were told to go home and that nothing could be done but they persued and found treaments that helped. If you would tell us where Mom was treated, or should I say not treated, our family can better tell you about other hospitals. You have come to the right place and we all really care.
Hi, John here.
I’ve just stumbled across your Foundation message board, and nice it is too. I think it’s great to see initiatives like this.
Following 4 weeks of tests, following many months of painful discomfort, my Mother (79) has been diagnosed with a ‘no hope’ CC. Apart from the drawn out hospital stay and a lack of medical she was discharged last night.
We are looking at a very poor prognosis and palliative care. I feel entitled to get a full and if necessary, an alternative option or two.What are people’s experience?
Any suggestions as to the best surgeon.
Regards,
John
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