Pancreatic Cancer Group: Introduce yourself and connect with others

When I was diagnosed with pancreatic cancer, it was my third cancer diagnosis. When I was first diagnosed with breast cancer, I had two young children and a marriage that was falling apart. I was in a complete stake of shock and my world was turned upside down and inside out. Then my oncologist and surgeon did not agree on the surgery (surgeon didn't think more surgery was needed after the local resection of the cancer and the oncologist disagreed). I had to take it upon myself to find someone for a second opinion. More chaos and confusion as I wound up trying to find my own consultant. The second opinion was very helpful. Once I had chosen my doctors and come up with a treatment plan, things settled down a bit.

With my second cancer, I felt a bit on more familiar territory and didn't wind up with too much with second opinions, my second opinion oncologist suggested the BRCA testing. Based on my family history, he thought the risk of the gene was about 13%. Shock of all shocks, I was found to have the BRCA1 gene. Did not turn my world upside down completely, but certainly changed things. At that point I was divorced and I went along and redid my will and trust.
Now with my third diagnosis, I am really a veteran, but I have much more idea how to advocate for myself and do my own research about my cancer and its treatment. Again I had to refer myself to a center of excellence, but wasn't too difficult for me to see where that should be.

I have learned from every story I read on this forum. We will be there to help you however we can. You probably do feel alone, but you are not at all alone. I hope you will keep talking to this group. I am sure we will all learn from your experience. Others can tell you how they have coped with their diagnosis and initial reactions.

What a neat testimonial for advocating for yourself, @gardenlady1116. Your journey with cancer has taken you down many roads and you have navigated the roads very well.

Your post reminds us that a cancer diagnosis never hits at a good time. There are usually other bumps in our road, and this new diagnosis represents just one more thing to deal with. I admire your tenacity and I hope that other members learn from your experience!

How are you feeling right now?

Hi Sandy, my husband had the same surgery in July. The doctorw will advise you of how to proceed diet-wise. The first step was liquid, then soft food (pudding, oatmeal, yogurt), then a light diet (eggs, toast, turkey, chicken, mashed potatoes). He was advised to stay away from raw vegetables and salad for the first two weeks. We found that if he had a meal with a little more fat, he'd have a bit of difficulty with digestion. One meal in particular was some ground chicken with a bit of mashed avocado - the avocado was a little too much so soon after surgery. He was lucky as it related to sugar, his sugar has been fine so there wasn't any restriction in that respect. Two things that helped him immensely prior to and after the surgery were using the spirometer and walking. I requested the spirometer in advance, and he started using it a couple of weeks before the surgery. It is amazing what the body is able to withstand. The thought of him getting out of bed and walking after that surgery was unbelievable to me, but he did and it was the best thing. If i can be of help in any way, please reach out. I'll be thinking of you both with positive thoughts.

Ray,
I so feel your anxiety. 11/2021 I was diagnosed stage IV out of the blue. A few side aches sent me to the doctor.
I’m here and I am thriving! Am I on medical care? Yes. Am I still doing the things I love, yes-except not many big bold cabs!
Get to a pancreas center of excellence, get second opinions, then make a treatment choice. You can do this! And many good things are coming for even better treatments so we can begin looking at this as a chronic disease.
Be sure that your doctors order genetic testing and tumor testing upfront. This will help direct your treatments now and in the future. Lastly, stay healthy! Fresh air, good foods, some quiet time, and laughing!

“Tumor testing “. What’s tumor testing? My oncologist has spoken of it.

Tumors should be tested to learn about your particular mutation(s) and to help guide treatment and also determine if you are eligible for any trials. You should also be given that information and afforded plenty of opportunities to ask questions and gain a better understanding of what it all means. That is standard practice. PanCAN.org has a lot of information on the importance of tumor testing and if you look around the website you may find a lot of very helpful information and good advice.

Learning that you have cancer can be so overwhelming at first. So, ask lots of questions and learn as much as possible. It takes time, but it's important. Every single cancer is unique in some way to the individual and the testing they do on "your" tumor is essential. Hugs!

Hi , my husband of 51 years was diagnosed with cirrhosis of the liver , liver cancer ,and pancreatic cancer . He is a 75 yr, old diabetic with ischemic colitis and in good health until an an ischemic event brought him to the hospital with what we suspected was appendicitis. The MRI revealed much more. He was released after a week , we are walking about 3 miles a day again as was our habit and are seeing a second opinion surgeon who specializes in the pancreas today . My question . Surgery is out . We were told 18 months . Should we be seeking palliative treatments or chemo and immunoglobulin therapy as the first dr suggested . My sweet husband is super sensitive to everything (food, weather, taste, pain ) especially food . Are there questions we should ask this Dr or should I not refrain from the serious questions and just allow my husband to confer with the Dr. ?

Whew! So much all at once. That is daunting, I know. There are lots of people on this board with lots of expertise, and I hope some will chime in to share ideas as well.

I think the first big question is what your husband wants to do. He's the patient and needs to set the agenda. Once you all have conferred and figured that out, then you can proceed on the path you've identified. Since no surgery is recommended, chemo would likely be his weapon of choice. That would lead to questions about which set of medications to use (there are generally two standards of care, but a whole lot of variations within those) and what to expect with those, and you can discuss those with the MD.

In my case, I decided to fight my cancer. (FYI, I'm stage 4 pancreatic and inoperable due to blood vessel involvement.) My husband is totally supportive. He goes to all appointments and chemo infusions with me. We plan our questions in advance, and I'm usually the one asking them, but some are his questions as well. (Did that make sense? Ha.) So yes, your asking questions is totally appropriate and understandable, as long as your husband is OK with it.

Re palliative care, at my healthcare system, I was immediately referred to a palliative MD right after my diagnosis. BTW, palliative care and hospice are not necessarily the same thing. At my system, palliative handles side effects and symptom management. I can get fluid infusions, massage therapy, acupuncture, integrative med and dietitian consults, prescriptions for neuropathy and other issues, chaplain support, etc.--no direct cancer treatment, but a host of things to help manage the cancer and the treatment. Hospice would be appropriate when treatment is stopped, and the palliative MD is the one who would help set up hospice care if/when I decide to stop treatment. So depending on what your provider offers, I would definitely say yes to palliative care right now. If you get on their patient roll, then it's easier to get to them when you need them to manage symptoms and such.

There are tons of posts on the various chemo regimens and how to manage them, diet, comfort care, etc. You can search for topics and see what pops up. Hopefully others will offer ideas as well.

Thank you so much for your response - it was extremely helpful and detailed !

Hell o everyone. I’ve been looking for group to join and happy I found this great site!

I count my blessings everyday that I reported white stool to my PCP who then ordered CT and a small cyst was found in the head of my pancreas.

Because my sister and grandfather had pancreatic cancer and an uncle with bile duct cancer, they followed me closely.
1 year after finding the 7 mm cyst an MRI was done and cyst was unchanged but was on main duct.
2 1/2 months later an EGD sono showed the cyst had grown to 10.1 mm.
On 5/13/2022 had a Whipple for suspicious main duct cyst which was found to have dysplasia!
I was fortunate to have to have a surgeon following me that averages 60 Whipples a year.
I tell everyone I can that we know our bodies and if you notice something unusual, call your PCP!!!
I’ll be 2 years post op and feel good except for some gas problems, abdomen cramps, with BM urgency but usually gone by late morning.
Good to hear what foods are better post Whipple. That was lacking by dieticians at hospital. There doesn’t seem to be a good recommendation.