Feeling very scared

tootsie1
tootsie1 Member Posts: 5,044 **

I am a survivor of stage 1 colon cancer since 2007. It'll be 14 years in November. And now, a CT scan has shown a large mass on my pancreas. Tumor markers for colon and pancreas are very elevated. my PET scan is scheduled for this coming Monday, and a biopsy will follow shortly after that.

Trying not to hit the panic button, but i'm scared to death. It looks like my liver is involved, as well. It's like a black cloud of doom hanging overy my head. 

Any encouraging words would be appreciated!

 

Comments

  • CancerFreeSunny
    CancerFreeSunny Member Posts: 39 **
    edited May 2021 #2
    I saw this....A wide spectrum

    I saw this....A wide spectrum of benign and malignant diseases can produce a mass in the head of the pancreas. It can be solid (ductal adenocarcinoma, chronic pancreatitis, endocrine tumor) or a cystic lesion (cystic neoplasm, true cyst or pseudocyst). The most important question is whether or not it is a malignant or benign tumor.What are your symptoms, if any?

     

    Pancreatic cancer appears differently, depending on which part of the pancreas the tumor is in, whether the “head” or the “tail.” Tumors at the tail end are more likely to result in pain and weight loss. At the other end, head tumors cause fatty stools, weight loss, and jaundice.

     

    I hope you are negative and maybe this has helped you to know you can have a mass and it not be cancer. Good Luck! 

  • tootsie1
    tootsie1 Member Posts: 5,044 **
    edited May 2021 #3

    I saw this....A wide spectrum

    I saw this....A wide spectrum of benign and malignant diseases can produce a mass in the head of the pancreas. It can be solid (ductal adenocarcinoma, chronic pancreatitis, endocrine tumor) or a cystic lesion (cystic neoplasm, true cyst or pseudocyst). The most important question is whether or not it is a malignant or benign tumor.What are your symptoms, if any?

     

    Pancreatic cancer appears differently, depending on which part of the pancreas the tumor is in, whether the “head” or the “tail.” Tumors at the tail end are more likely to result in pain and weight loss. At the other end, head tumors cause fatty stools, weight loss, and jaundice.

     

    I hope you are negative and maybe this has helped you to know you can have a mass and it not be cancer. Good Luck! 

    Yes, I am aware that it could

    Yes, I am aware that it could be something benign, and that is my prayer. I've been having abdominal and back pain, along with some nausea.

  • Deanie0916
    Deanie0916 Member Posts: 452 **
    Tootsie

    Hope you had good and definitive results from the PET scan and biopsy. Good thoughts and prayers for you.

  • LouC
    LouC Member Posts: 8 **
    Any updates to share?

    Hello Tootsie! I'm eager to know how you are doing and the results of your diagnostics? Embarassed

  • Big Truth
    Big Truth Member Posts: 2 **
    edited July 2021 #6
    A Great Resource

    I just recently found a great resource that may help you face the future with less fear.  It is a book called Radical Remission by Kelly A. Turner, Ph.D.  This author provides a wealth of information and techniques that Western medicine has barely explored but has been used for centuries with incredible results.

     

    While there is far too much information to mention everything here, you may certainly want to explore changes to your diet and connecting/reconnecting with your spirituality.  Always look for the positivity and joy that surrounds each of us and thank God for each day.

  • tootsie1
    tootsie1 Member Posts: 5,044 **

    I was diagnosed with Stage 4 pancreatic cancer. It has spread to my liver. Doing pretty well, actually.

  • LouC
    LouC Member Posts: 8 **

    I too am stage IV pancreatic with mets to liver and doing well. You are not alone. :)

  • tootsie1
    tootsie1 Member Posts: 5,044 **

    How long have you had Stage 4? What treatment are you doing?

  • LouC
    LouC Member Posts: 8 **

    Folfirinox - 46 hr infusion every other week. Initial Dx in Feb with zero previous medical history or illness.

    Surgical Onc was hoping for whipple, I had to play the biopsy game with inconclusive results. It walked like cancer, talked like cancer .. but .. constant testing for staging delayed any treatment so the scalpel jockeys then handed me off to medical oncologist once imaging confirmed mets. The chemo IS doing it’s part, my side effects are few and easily manageable. Super grateful for my oncology team!

    What is your regimen, how many cycles? How’s it going for you?

  • tootsie1
    tootsie1 Member Posts: 5,044 **

    I also started with Folfirinox. The plan was to do 6 sessions of chemo (every other week) and then see where we were. The irinotecan gave me tremendous diarrhea, and I was hospitalized for a week after my first infusion. They took that out of the picture, and I continued with the other 2 drugs. The oxaliplatin was taken out after the 5th cycle due to neuropathy. Things were looking good. Tumors in both the pancreas and the liver had shrunk, and my CA-19-9 was down in normal range. Recently I am experiencing some growth, so we are going to either add back Irinotecan and continue with chemo, or I may enroll in a clinical trial. That will be decided in a couple of days.

  • LouC
    LouC Member Posts: 8 **

    btw, I appreciate you sharing your journey, thank you for that! We lowered my Irinoteca after first tx due to severe side effects and i've remained on the same regimen since...on #11 (or maybe its #12) next week. My marker has continued to drop as well and according to my previous images (nearly 3 months ago) I was grossly stable with some reduction in size. My next images are scheduled for Jan., will see what happens next when those come in. I certainly hope you find a plan that offers you what you require without any of your previous side-effect nastiness. *fingers and toes crossed* Please keep me posted, I'll be thinking about ya. 🙂

  • StageIVSurvivor
    StageIVSurvivor Member Posts: 14 **

    Was NextGeneration Sequencing (NGS) performing on a tumor biopsy specimen to determine its molecular profile? If there was insufficient biopsy material, a liquid biopsy can be performed on a vial of blood to look for germline (inherited) mutations. This is the first step in Precision Medicine….looking for actionable genes that leads to Targeted Therapy. The information allows the oncologist to customize a treatment plan specific to the genetic make-up of the tumor. If an inherited biomarker is found, an oncologist can prescribe a treatment specific to it. The information is valuable in determining suitable clinical trials. I took advantage of a liquid biopsy that identified an inherited mutation. This allowed me to search for a clinical trial specific for that mutation. The BRCA gene mutations are implicated in colon, pancreatic, breast, ovarian and prostate cancer. If the tumor on the pancreas is a primary tumor (unrelated/ not metastatic to the colon cancer, your oncologist likely would order NGS or a liquid biopsy to see if BRCA, PALB2 or ATM genes are a factor in driving these cancers.

    The pancreatic Cancer Action Network (PanCan.org) provides free NGS testing to any pancreatic cancer patient in the USA. The program is called Know Your Tumor and information is on their website or you can call Patient Central of PanCan.org at 877.272.6226, M-F, 7:00am - 5:00pm PT.

  • tootsie1
    tootsie1 Member Posts: 5,044 **

    I am not sure. Thank you for the information.

  • StageIVSurvivor
    StageIVSurvivor Member Posts: 14 **

    Check with your oncologist as to whether a biopsy specimen was sent to an NGS lab for profiling. Three common labs are FoundationOne, Invitae and Guardent360. PanCan.org uses Tempus Labs. You likely would have been presented with the report if it has been done. Here is the link on the information about the free Know Your Tumor program- https://www.pancan.org/facing-pancreatic-cancer/patient-services/know-your-tumor/?utm_campaign=patient-campaign&utm_medium=offline&utm_source=patients-and-caregivers&utm_content=body-know-your-tumor

    PanCan.org is currently closed until January 2nd. Call them and they will provide information you can provide to the oncologist on how to be tested. Genetic profiling made all the difference in my successful treatment and long-term survival.

  • LouC
    LouC Member Posts: 8 **

    Hello Tootsie - How are you?? PanCan is a great source of information. I've had profiling done w/Invitae and (((surprise))) not a single mutation. Nadda. Nothing. I'd say back to the drawing board however no 2 patients are the same and from my personal experience, this tends to be where the medical professionals go silent scratching their heads. PanCan has been wonderful in helping me research what might be available and/or on the horizon as far as possible trials, tx, and eligibility.

  • tootsie1
    tootsie1 Member Posts: 5,044 **

    I did get a list of possible clinical trials from PanCan and shared that with my oncologist. I am beginning a trial associated with Dana Farber Cancer Center on Tuesday. It was not on that list, but my oncologist feels this would be a good one for me to try. She is involved in clinical trials and research, so I trust her opinion. Feeling good about things! I've come a long way since my original post in May. At that point I just thought I was doomed to immediate death. Thank goodness I was wrong! I have been enjoying every day and spending lots of time having little trips with my husband and spending a lot of time with my grandchildren.

  • LouC
    LouC Member Posts: 8 **

    I am SO happy to hear you have an oncologist who is invested and trustworthy with your care - That is everything! Congrats on the trial and most importantly, congratulations on thriving! Enjoy and good luck! Please keep us posted.. Happy New Year :)