Carcinoma of unknown primary
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Pecan,
Just like Marion has stated, different emotions will visit you and difficult decisions made. I highly believe in quality of life. There was the moment of fear and sadness which you will realize needs to be faced and give yourself the will, strength, and hope to give her support. The most important thing you can do is help her, no matter how tough it is at times. Think about her home care also by supporting in palliative care to help her symptoms of fatigue and if she can’t sleep. Also, implement a good nutrition program and emotional support. Chemo is a personal choice. Only from my experience, we had to turn away from it as my mom has a chronic anemia which the side effects would have been too harsh for her body. In this case there was no option. So you can see how each CC patient is different.Please keep us posted and know we are all in this together.
pecan….treatment vs. quality of life is the most important decision to make. Your mom made a wise choice by given chemo a try, and as she mentioned, it’s in her power to stop treatment at any time. The vast majority of CCA patients receive Gem/Cis, the standard of care for this cancer and I hope they chime in on this important conversation to help lessen your Mom’s (and your) fears.
Know that with time you will accept that this cancer has come into your life. Coupled with moments of absolute fear and anger come those times of strenghts and optimism.Also, please remember, we are here for you and we are in this together.
Hugs
MarionThank you all for your kind responses.
My oncologist at Mayo Clinic have recommended cisplatin and gemcitabin. My mom meets with the local medical oncologist this coming Wednesday to get ready to start chemo. At the moment, she’s really having mixed feelings about chemo. She feels pretty good at the moment and is fairly active. She gets winded because the lymph nodes that have the cancer are pressing on one bronchus which restricts airflow.
Her biggest worry at the moment is that chemo will make her sick and that she wil! waste whatever time she has left feeling lousy. We talked about the possibility of just forgoing chemo and just making the most of whatever time she has left but she said she’d make one run at the chemo and see what happened.
Probably at this point, she is coping better than I am. I end up in tears several times a day. I feel better when I see her going on like it’s business as usual but then my thoughts get the better of me.
Thank you again for your responses. I’ll keep you posted on how chemo goes.
Laura
Pecangirl…….Already you have received a warm welcome and great advice. I agree, receiving this diagnoses is like being hit in the stomach with a baseball bat, but we soon pick ourselves up and get out the boxing gloves.
Know that today’s patient have many more treatment options than ever before and it’s likely your Mom will benefit from one or the other treatment.
Here is a great link to peruse: http://cholangiocarcinoma.org/newly-dx/
Your physician explained it right, at this point we don’t see any genetic predisposition of this cance. It is highly unlikley you or your family member will contract either Ampulla of Vater or cholangiocarcinoma. There are thousand’s of postings on this site and to date we have not one family memberr reporting on inheriting this cancer.
Currently is a study you may be interested in: http://cholangiocarcinoma.org/professionals/action-alert-mayo-clinic-study/
We advice all patients to request full comprehensive molecular testing such as offered by Foudation One or Carris. Don’t know about Carris, but Foundation One bills the insurance and does not charge the patient.
Try to stay positive, come here for support and education and know we are in this together.
Hugs
MarionDear Pecangirl,
I am so sorry to hear about your Mom, but very glad you found us. When my Mom was diagnosed, we thought at least they caught it early so she is operable. However, during surgery they found that location of the tumor made it inoperable, and they closed her back and came to us in the waiting room 3 hours after they had wheeled her back to OR. At that time, we were told a year- maybe a little more with chemo. However, we’re almost 4 years later, and after chemo and Y-90, she has no evidence of disease. So, although it may be a long shot, don’t give up hope yet.
Hopefully she will respond well to chemo and it may give you time to move on to plan B.
Keep in touch and let us know how she is doing,
Best wishes,
CatherinePecangirl,
Thank you for sharing on our forum. This is a great place for support, and I was in the same place when my mom was diagnosed. It was hard to accept and understand. Even if it is extremely difficult, get several opinions from oncologists and treatment plans, and have hope. Take it one day at a time and no one can predict the days or months of anyone. How is she feeling now? What chemo regimen will they use? Look into palliative care right away, and you can use the search function on our site.It’s a tough road, but the most important is you are present to offer emotional support and care.
Pecangirl,
So sorry for your having to face this horrid cancer in your mother. This is an amazing group to help support and give great advice though. You will find much comfort here.
I don’t know much and have only been on this site for a few months which is when my MIL was diagnosed with inoperable stage 4 cholangiocarcinoma with mets to the liver, pancreas and gallbladder with lymph nods also involved. She is only 59.
My husbands family is taking it one day at a time and so far she is doing well, except for pain and not sleeping well.
I feel so sad to be posting here. My 71 year old mom was just diagnosed with carcinoma of unknown primary that her oncologist thinks is probably cholangiocarcinoma. My mom has vasculitis and was at Mayo Clinic for a follow up visit. As part of her testing, they did a CT scan that showed an enlarged lymph node in her sternum, near her trachea. The doctors thought it was probably an infection of some sort because a subsequent PET scan only showed that one problematic area of lymph nodes. The doctors went ahead and did a biopsy just in case. It came back as adenocarcinoma. The oncologist hypothesized that because of the location of the lymph nodes. It was probably non-small cell lung cancer. So we came home with a treatment plan for lung cancer and a somewhat optimistic outlook. A few days after we got home, Mayo called and said the molecular testing showed that the cancer most likely originated in her GI tract and it is most likely cholangiocarcinoma because this type of cancer sometimes shows up as carcinoma as unknown primary. Now we have a different treatment plan and a much more grim prognosis…probably just a few months, even if chemo helps.
My mom and my family is absolutely reeling from this whole situation. My mom is fairly active though she has slowed down a little these past few years. She still does a good bit here on our pecan farm. I know that active peop!e find out they have cancer all the time but it’s still unbelievably shocking to find out that your mom has months to live when cancer wasn’t even a possibility when we showed up in MN.
So now we are waiting for her appointment next week to start chemo and hoping it will buy her a little more quality time. But honestly, after then past three weeks of ever increasing bad news, we don’t have much hope.
And now my brother, sister and I have to grapp!e with the fact that our dad died of adenocarcinoma of the ampulla vater, a rare GI cancer and now our mom has a rare GI cancer. Even though the oncologist at Mayo told us that there isn’t a definitive heriditary link with either of those cancers, we sort of feel like we have a suspended death sentence waiting for us in our digestive tracts.
I’m glad I found you all. Even though I wish with every ounce of my being that I didn’t need to be here, at least I have a place to go now with people who have been through something similar.
Thank you for listening.
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