Please help me. My world is falling apart.

Posted by needhelp123 @needhelp123, Apr 3, 2022

I'm 25 years old. My sister is 18. My mom went into the hospital last week because she had stomach pain and they initially said constipation. She had 0 other symptoms apart from that pain in her stomach, and blood results and everything else came back fine. The next two doctors she went to said it was probably pc, and that there was no cure as the mass looks big and they said they see two spots on her liver I think. We are still awaiting the 100% results but the doctors said that it is 98% the case. My family is family apart, please tell me there is something we can do, though she said she won't be doing chemo. I need help. I can't lose her.

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Sorry to hear what you're going through. If there hasn't been a biopsy no one should be jumping to conclusions. If the biopsy is positive for PC you need to get your mother to a National Cancer Center (like Mayo) with PC specialists. Most oncology practices and most general surgeons don't have a lot of PC experience. You need a team with the highest skills when dealing with PC. Also contact pancan.org for further guidance. Bless you and your family.

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@needhelp123 Of course you and your sister are very frightened. Your mother in the hospital is reason enough to be scared let alone the unknown of whether or not she has cancer.

Is another family member available for you for support? @beachdog is correct that many tests are involved before a diagnosis of pancreatic cancer can be made. Is your mother under the care of a cancer team with expertise in digestive diseases (like the pancreas, liver, etc)? If there is even a hint that this is cancer then I also think your family should seek out another opinion at a National Cancer Center. Many academic medical centers have specialized centers.

Please tell yourself that there is always hope. That's the key word in cancer. There is so much research going on and while some cancers cannot be cured the cancer can be managed with medication and other treatments.

Please let me know if there is another way I can help, will you?

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@naturegirl5

@needhelp123 Of course you and your sister are very frightened. Your mother in the hospital is reason enough to be scared let alone the unknown of whether or not she has cancer.

Is another family member available for you for support? @beachdog is correct that many tests are involved before a diagnosis of pancreatic cancer can be made. Is your mother under the care of a cancer team with expertise in digestive diseases (like the pancreas, liver, etc)? If there is even a hint that this is cancer then I also think your family should seek out another opinion at a National Cancer Center. Many academic medical centers have specialized centers.

Please tell yourself that there is always hope. That's the key word in cancer. There is so much research going on and while some cancers cannot be cured the cancer can be managed with medication and other treatments.

Please let me know if there is another way I can help, will you?

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Thank you for your kind words. Yes, I think we are all just numb now from the shock and crying, but we are holding on to hope and doing a lot of research. We already looked into multiple different clinics and doctors and help, and we are willing to travel across the country for the best treatment we can, and we have already found some promising things as we sadly are currently going to a non cancer type of hospital for biopsy so we can really only take their word for it as they are the closest right now. They are taking their sweet time however so we will definitely not be doing treatment with them.

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@needhelp123 You are most welcome.

If you are considering Mayo Clinic there are three campuses located in Arizona, Florida, and Minnesota. It will help to have a doctor referral. Does your mother have a primary care doctor (family doctor)? Her family doctor is a good resource to ask for a referral as well as where to go. As I mentioned in my earlier post look for a university medical center that has a National Cancer Center. This is where you will find the specialists and where the research happens in cancer.

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here is a website that will help you find a National Cancer Center in your region:

https://www.cancer.gov/research/infrastructure/cancer-centers/find
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@needhelp123

Thank you for your kind words. Yes, I think we are all just numb now from the shock and crying, but we are holding on to hope and doing a lot of research. We already looked into multiple different clinics and doctors and help, and we are willing to travel across the country for the best treatment we can, and we have already found some promising things as we sadly are currently going to a non cancer type of hospital for biopsy so we can really only take their word for it as they are the closest right now. They are taking their sweet time however so we will definitely not be doing treatment with them.

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@needhelp123, how are you doing? How is your mom?

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Probably PC and PC are very different diagnoses! Get a definite diagnosis before it’s too late. Don’t let them put you off like my sons doctors did for three months only to find he was stage IV metastatic inoperable cancer. Get to a gastroenterologist and get scans, blood test, and any other tests that need to be done. Look for any swollen lymph glands. Get proactive about the disease and tests that need to be done. Where any tumor is located within the pancreas and the spread of the tumor is major in making decisions for the result. My son found out maybe a little too late to help him without trials and I blame inexperienced doctors for that! What doctor sees swollen lymph glands and no other problems exist without doing further tests or referring a person to a gastric doctor. So, again, get proactive and get to a gastro dr that knows what he’s doing! I wish you luck and many prayers because it’s a roller coaster ride with this disease. But get to a gastro doctor!

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I am so sorry for your son and your family. Prayers for you and your son.

It is so unfortunate that we put our trust in these inexperienced doctors.

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Go to Mayo clinic. They are experts in pancreatic cancer. Dont mess around the the local md's. I first went to my local gastroenterologist and he told me it was nothing to worry about, but "get an EUS just so you can sleep at night." I got the EUS and it turned out to be pancreatic cancer. Had I "not worried about it" it might have been too late.

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@nhow234 You are right. Go to the best clinic you can find, even if you have to do a Telemed. Work out the plan, and get the testing done properly. Most folks do not realize that a person can have multiple types of cancers and other diseases, each of them mimicking others. My first round with pancreatic cancer was diagnosed as "loose bowel". Now I know I have myeloma in many forms, every one of them cancer. Even Mayo screwed up that first go-round with cancers. Now, I am not gonna pick on anyone, but we all make mistakes, so keep on keeping on until you know you have it correct. oldkarl

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You are in a tough spot and, in my opinion, the final decision is your mother’s, but it will consider you and your sister. That is how mothers decide what is best. Talk to her along with her doctors and make a plan for the future. If you are in tge right place medically ( we are not Mayo patients and have a different perspective ) you will have a team with whom you can discuss all of the options for her care based on her medical assessment. I am a mon of sons older than you up but I understand your confusion. We lease contact me any time for support although I have no medical background or knowledge, only what I am painfully aware of bc of my husbands pc. Take care of each other and reach out to any of us whenever you need to.

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