July 16, 2015 at 12:14 pm #87596
Thanks so much for the encouraging notes! It is so difficult to find survivor stories out there, so I’m psyched to hear about your stories. Perspective after a cancer diagnosis is so different. Here you all are telling me how lucky I am that they found the cancer so early. Meanwhile my friends and family are crestfallen that I’m a new young mom facing this scary diagnosis. Perspective counts!
Post-surgery recovery continues relatively smoothly and it’s especially nice to be home with my kids. I am scheduled to see the Hopkins oncologist at the end of the month and begin a chemo treatment plan in mid-August. I see that 2nd opinions are strongly recommended for the newly Dxed. Any recommendations on where to go? For 2nd opinions? I’ve been happy with the Hopkins liver transplant team, but am less familiar with the oncology team here. Also, am curious about what to expect with chemo. Should my husband extend his leave from work? Will I need to hire a nanny to care for my baby? Just wondering how incapacitated I am going to be from the chemo…I realize it’s highly individualized, but any shared perspectives are appreciated.July 13, 2015 at 8:23 pm #87595jathy1125Spectator
Jessica, Congrats on new baby and sorry we met this way. I am excited to tell you I am 6 years cancer free thanks to a transplant. I keep my story posted at http://www.catherinedunnagan.com
Tiffany Snead Schwartes, is in your age group with young children and is 2 years cancer free thanks to transplant, she also did chemo after transplant.
Please contact me if I can help or you would like to talk.
CathyJuly 7, 2015 at 3:38 pm #87594knfarrowSpectator
My oncologist recently told me that I’m “off the books”. I’m young. I managed to have a successful resection even though my tumor was quite large. SO, she is quite literally making up a plan for me and hoping for a win! That’s the best we can do.
Try to stay positive and focus on those adorable little people!
KathyJuly 5, 2015 at 12:24 pm #87593herculesModerator
Jessica, although they seem to be more common as time goes on, young cc patients seem to be more common today than ten years ago, it is still quite infrequent. I was 49 when diagnosed and operated on. It happens, and usually without symptoms until later stages. I was fortunate, in the words of my surgeon, my tumor “manifested itself in a way that produced early symptoms” , your tumor was found during pathology tests after transplant, both cases incredible strokes of luck. Early diagnosis is a key element to long term survival. May your good fortune continue, PatJuly 4, 2015 at 1:14 pm #87592lainySpectator
Dear Jessica, it is almost impossible to narrow things down as we just plain do not know. We are more advanced than a few years ago but a lot of the whys still remain out of reach. We ask ourselves, WHY so young.
The one proven cause is a parasite in a fish, considered a delicacy in Asia. The parasite is called liver flukes and adheres to the bile ducts for up to 40 years, leaves and when it leaves it leaves behind liver flukes. I believe this is what happened to my husband. With that said, we do not know the other causes. If you Google liver flukes they do have some information on the parasite.
We also have a SEARCH button at the top of the page and if you type in a word or 2 lots of posts will appear on that subject.
While it sounds cliché, it is true that everyone seems to be so different so it is hard to say that what works for one will work for another.
The best thing you can do is to get a 2nd or 3rd opinion so that you have covered all territory. No doctor should deny that request.
We do NOT listen to stats as we were not born with expiration dates on our feet so truly agree with your ONC. The best news is that you were DX with Stage 1 and that you are young.
You might want to use the SEARCH engine to look up Roux-en-Y and posts will appear.
Wishing you the very best and know that knowledge is the best tool you can have to fight CC.July 4, 2015 at 11:43 am #87591
Thanks for the warm welcome, everyone. I do have a great local network that is ready to pitch in on my recovery at home. Can any of you direct me toward discussions or members who also have stage I and are younger in age? The oncologist keeps telling me to ignore the survival stats, which largely reflect older patients with late stage carcinoma. But I can’t seem to find much information about cases like mine. I’m wondering about my prospects. I’m wondering whether adjuvant chemotherapy is merited. Trying to parse out what info applies to me and what doesn’t.July 2, 2015 at 9:24 pm #87590gavinModerator
Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through right now. You sure do have so much to deal with right now don’t you. Congratulations on the birth of your second child, that most certainly is to be celebrated. No wonder you are overwhelmed with everything that is going on in your life right now, that is an understatement to say the least.
That is great that you were able to have the surgeries though and excellent news that they were both a success. I hope that your recoveries from them both will be smooth and as quick as possible. If we can help at all then please just ask and we will do what we can. I’m glad that you have joined in with us here although so wish that you hadn’t had to find us. We are here for you and we care.
My best wishes to you and your family,
GavinJuly 2, 2015 at 5:43 pm #87589knfarrowSpectator
I’m sorry that you have CC, but glad for you that they found it when it was small and got it out! I also have little children – a 6 year old and 4 year old twins. I am fighting this battle for them. At least for me, it’s better when I focus on them and being the best mommy I can be! Good luck with your recovery.
KathyJuly 2, 2015 at 8:22 am #87588middlesister1Moderator
Welcome to our group. I’m sorry you had to find out what CC is, and especially at such a young age. I’m not sure about the statistics, but it seems like we are seeing more and more diagnosed who are not in the over 70 age group.
Although it’s been many years, I remember the challenge of recouping from a C-section with just the one newborn; I can’t envision a transplant and the two little ones. I hope you have a tremendous support group so you can recover (while enjoying your babies).
We all wish you the best. Please let us know how you are doing.
CatherineJuly 1, 2015 at 8:20 pm #87587iowagirlMember
Jessica, What a really crazy, and I’m sure you feel, unbelieveable year you’ve had so far in 2105. A new baby…..how wonderful…….as a baby is a sign from God that life will go on. Congratulations on becoming a mother again. I’m sure that has almost been lost in the transplant surgery and surgery again….and now looking at chemo when you’re well enough. It will be all worthwhile though, if it keeps you here with your babies. Rest….while with a 2 year old…..and new baby….doesn’t really sound possible, this is the time to ask for help from others…to do mundane things like laundry, or cleaning, or cooking….and save any of your precious energy for your recovery and time with those babies. I don’t know if it is availablel in your area, but here, at least one cleaning company will come out and clean the house of someone in treatment or recovery from cancer. You might check into it. I found about our local company by reading their website.
For now…….we have to believe that this has been found early and you are going to be around a very long time for those sweet babies.
Julie T.July 1, 2015 at 5:57 pm #87586lainySpectator
Dear Jessica, my goodness where to start…..Congratulations on the new baby and congratulations on the successful surgeries! You have really been through it all and in my eyes are a real true heroine! I would be overwhelmed as well. I know it is easier said than done but do try to focus on one day at a time. Below is a sight you may find helpful and please do keep us in the loop on your progress. I am thinking you need a lot of rest but sounds more like a dream with a 2 1/2 yr. old and a baby. I have a feeling these munchkins will keep you strong.July 1, 2015 at 4:25 pm #11116
I am a 36 yr old mother to a 2.5 yr old and 8 week old baby. I was diagnosed with primary sclerosing cholangitis back in 1993 but had been fortunate to live w/o symptoms for the past 22 years. Then, in the last trimester of my 2nd pregnancy, my liver function began to deteriorate rapidly. After undergoing ERCP, MRI, liver biopsy, and other diagnostics I was listed quickly for a liver transplant and received a transplant at Johns Hopkins on June 18, 2015, just 6 weeks after having my baby. I thought the drama was over then, but unfortunately for me the doctors discovered a stage I 0.9 cm cholangiocarcinoma in my removed liver that was ‘on the margins’ of where they had connected the new bile duct to my old bile duct (all tests prior to transplant had been negative for cancer, so they performed transplant unaware of the cancer). I went back under the knife Just a week after transplant for the surgeons to remove any remaining cancerous tissue. They successfully performed a Roux-en-Y and achieved ‘negative margins’, so I am glad we went through with the 2nd surgery. Now , instead of facing a year of maternity leave, I am looking at transplant recovery followed by chemotherapy. Very overwhelmed with what the immediate future will look like and worried about my long term prospects too. Kids are still so young, so I want to do everything I can to be here for them for years to come. Looking forward to learning from this community.
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