This is a really tough post for me to write today. I’d been having stomach pains and nausea for months, and finally gave up and went to the ER. I ended up in the hospital for 10 days. Last Wednesday, I was diagnosed with Pancreatic Cancer.
We’re still trying to schedule treatments. I start with chemo for up to six months. They don’t expect me to last that long. Most people don’t. After chemo, if the tumor has shrunk enough, they will perform major surgery to remove half my pancreas, a third of my small intestine, and more. I didn’t catch what the “more” was. I was kinda shocked about the small intestine part.
I will keep you all updated on what’s going on. Feel free to ask me any questions. I have no problem explaining what’s going on.
Comment on other posts, too. It makes my day to see people interacting with my blog. I figure that staying as positive as I can will be the best thing that I can do to get through this.
Sorry to dump this on you all, but I wanted to explain what’s going on, since it might affect my ability to post on a regular basis.
Karen Lynne Creates 
Wishes for a good result.
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Fight.
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Karen. 6 years ago and 1 month ago my husband was diagnosed the same. He went to Dr. Sheppard at OHSU a world reknowned pancreatic surgeon. We only had a friend tell us to find him. We had no clue what to do. Sounds like you have found help. The biopsy said two tumors each end of the pancreas with one spilling over into the deuodenum & pylorus which is the stem sort of stomach to the small intestine. They also found the tumor was wound around the bile duct and that had to have a stent placed to keep it open for bile to run into the intestine. So they said it was late stage 3. When the got in they found the portal vein that brings the blood from the intestine back to be cleaned by the liver had the tumor around it.
So he really was stage 4 once they had the surgery. Before he had surgery He had chemo for 5 months when Dr. Chen the gastrointestinal specialist for cancer with the case said the tumors had decreased as much as possible and it was time to do the surgery. So he came out of surgery without a pancreas, spleen, gallbladder, pylorus, dueodenum and the bile duct and they removed his portal vein and placed a cadaver vein in place.
He rehabbed. We began life with out a pancreas that is work but doable, AT OHSU & Adventist campus we had our oncologist, a dietician, of course the surgeon and then the doctors who monitored the pancreatic enzyme replacement, his pcp, endocrinologist at OHSU, and any other issues that popped up over the last 6 years. Amazing team and we surely appreciated them very very much. We were astounded that we could sustain him with life after that intense of a surgery. We have learned a lot about making this work.
The most important thing is to have someone that will walk this path with you. We had been married just 50 years when the DX came in. So we have each other. And I mean it is so wonderful to have the care a 2 way street. I hear you it was devastating news to us as well. But through the grace of God and a marvelous health care team he is standing in the kitchen right now fixing his own breakfast, figuring his own carbs ( after surgery you need someone to help you do this absolutely and over time be able to assume that responsibility independently in case your dependable partner is unavailable. ). He didn’t figure them for at least 6 months and t hen got into it slowly. We have a method.
My heart goes out to you, Our hope was in our toes 6 years ago, we weren’t sure of the future. Then we finally realized that no one is really sure of the future and that loving each day and the people of that day is the best that any person can do.
Removeal of the pancreas is occuring frequently. The good news is that this Feb OHSU now has a blood test that has 85% accuracy for pancreatic cancer. I keep telling folks that any digestive upset, don’t just think it is the food etc but ongoing it can be hidden pan cancer. I tell that to folks all of the time. There is a test for it!! NOW.
For you I want you to know that we hit the pits for hope at one point in our journey and Dr. Chen found out that the biopsy/study of Bruce’s cancer found that the DNA was not the typical pan. can. But it was related to cancers that could respond well to immunotherapy rather than chemo!! So if they have not been able to ascertain for sure, ask your oncologist if they can check the DNA of the cancer and see if there are mutations. YOu don’t need to know what mutations are, I am not sure I do but the more there are the greater chance the immunotherapy will work. After surgery when he had a metastasis, immunotherapy zapped the cancer within 3 months!! We go in another month for the routine CT scan to see if there is any reemergence of the cancer. but he has 3 years of them not finding anything. Of course pan can is a secretive cancer hiding until a person can’t fight it off, so we never say he is cancer free. We just thank God that we have each day, week, month and year.
A cousin of mine had pan can. They did the chemo surgery-she kept part of her pancreas and then they did radiation and then she was in a research group using a vaccine to keep the cancer away. She is living her life well, been on a cruise etc. She is 20 years younger than my hubby and had less organs removed.
I hope this information didn’t over whelm you. We were hungry for other people’s experiences at your stage. For this is a road that we never dreamed of traveling. Cancer intervention has really improved. President Biden was determined that cancer be researched and more answers given as he lost as son to cancer. However, now he too has it. They say that just getting old is a correlation to getting cancer. There are a number of pancreatic cancer support programs. https://pancan.org/facing-pancreatic-cancer/about-pancreatic-cancer/what-is-pancreatic-cancer/
Recently, I have gone to a Mayo Clinic site where people and care givers can give each other support. We don’t go there for treatment at all. We have the greatest team right here in our front yard, OHSU. but it is interesting hearing from others and there is a connection place on their site somewhere. Many people share who aren’t actually going to Mayo Clinic for treatment. https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/symptoms-causes/syc-20355421
Your neighbor
Mary
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Mary,
Thank you so much for this reply. I’m going to copy and paste it into a file so that I don’t lose track of it. I haven’t even had my first apt with my oncologist yet. Still waiting for them to get all the test results from the hospital. They haven’t told me what stage it is. There are 3 veins involved in the tumor. I get chemo first to shrink the tumor, then they remove things. If they can’t shrink the tumor enough for surgery, they will just try to make me comfortable.
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Everything takes time. We so know the angst you are going through. The question on the dna is an important one in today’s treatment, this just emerged really not too long ago.
Targeting the cancer gene characteristics is the new process and has had some robust results in many cancers. Just for your file here is the progress made with the use of immunotherapy which my husband had. He has not had any therapy now for I think 2 years, although he is checked regularly and the immunotherapy made that possible. The drug Keytruda was very useful in his case. But it all is determined on what the cancer gene is like. But of course the t treatments and sequences of intervention are a fine set of well researched processes. https://www.cancer.org/cancer/types/pancreatic-cancer/treating/immunotherapy.html
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They have already sent a couple of samples for genome testing. Which, quite frankly, I find fascinating. That part will really interest me.
Again, thank you for talking to me. I’m really glad I posted the announcement this morning.
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Karen. So sorry for the shock and confusion in that crisis moment! I’ve been there with triple negative breast cancer 2x. I am now 6 years post 2nd DX and walking around town with one breast!! If you see me say hi!
The fight you are about to take on takes everything you have in you and more. But fight! It’s worth it. You will have bad days and good days but every day we wake up is an achievement and a goal reached!!!
I did chemo first round. Then radiation only second round. TNBC has very few treatments especially being genetically negative as well.
I’m sending all the strength and healing to you! You have options for treatment and that in itself is a blessing! A non alcohol cheers to you this Independence Day ❤️🤍💙
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Thank you! I just got back from my initial consult with the oncologist. Have appointments for a “Chemo Class” to teach me what I need to know for what’s coming. Kinda excited about that. Have an appointment to see someone about diet and meds. Have two appointments for the first chemo treatment. Just need one more to get the port put in, but insurance needs to put their 2 cents in first. I feel much better, now that some questions have been answered. And it’s not as bad as I was afraid it was. Thank you for your words of experience. I’m finding that every time someone tells me that they are or have gone through this, either themself or a loved one, it really helps.
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