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Post by berty on Feb 11, 2017 21:15:39 GMT
I'm so sorry. I'll be thinking good thoughts for you and your family. There's already been such great advice given, and I'll second the suggestions to take it one thing at a time. Focus on you and your health first, and let others help carry some of the burden for a while.
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MDscrapaholic
Drama Llama
Posts: 6,389
Location: Down by the bay....
Jun 25, 2014 20:49:07 GMT
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Post by MDscrapaholic on Feb 11, 2017 21:22:16 GMT
Donna, I am so sorry to hear this. That's really good news that the tumor is encapsulated! Are they going to do a biopsy?
My DH had a 2 cm mass at the head of his pancreas and had a Whipple three weeks later. It's a tough road but it can be done. I wish I could help you in some way. The best thing I can tell you right now is to get a notebook and take it with you to all your appointments. Write down what the doctor/oncologist says, the date, the time, because you're not going to remember what they said when you get home. We found it helpful to take a family member or friend along to DH's appointments just to take notes. That notebook came in handy so many times.
((HUGS))
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Post by scraphappy0501 on Feb 11, 2017 21:25:22 GMT
Sending lots of hugs and prayers to you. We are all fighting with you!
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Feb 11, 2017 21:28:14 GMT
Oh my. I am so very, very sorry. That's about the worst news you could have received. From your message, it's clear that you know the prognosis for pancreatic cancer remains pretty bleak. I went and read about the surgery and you are right, it sounds pretty awful. I strongly believe in quality of life, and that this should be the goal of treatment. I think that not having the surgery is a completely reasonable thing to do. For any treatment options, look at how you will feel, what your life will look like, while you are going through that treatment option. Is it better than just providing palliative care, i.e. good symptom relief? It is really important that you do what YOU are comfortable doing, what YOU feel is best; don't allow anyone to bully you into doing something that you don't want to do. In my experience, most doctors will push for patients to do the most extreme treatments available, and they don't take into account what the patient's life will be like. And I strongly urge you to do your own research about treatments, outcomes and possible side-effects.
I suspect that you are going to need to stop working at some point. If you do the surgery, that may happen soon. If not, you might be able to continue for a while. But please don't make yourself miserable with working if you are too ill.
When my sister was first diagnosed with brain cancer, and right before her surgery, she told me how she had to get better and get back to work because she was the primary wage earner (her husband made quite a bit less than her). I told her not to worry about that. And I knew she'd never be going back to work. I was correct. And it was important that she get to do some things on her bucket list, and most of all spend time with those she loved. Trust me that THIS is what your loved ones will want; time with you.
Do you have disability insurance? My sister did, and this helped with the reduction in income.
I will be thinking of you. I hope that you are able to come to a decision about your care that feels right to you. Remember this is, first and foremost, YOUR body and YOUR journey.
I am so sorry. Please know that the Refupeas will always be here for you.
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melissa
Pearl Clutcher
Posts: 3,912
Jun 25, 2014 20:45:00 GMT
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Post by melissa on Feb 11, 2017 21:45:30 GMT
Donna, This is the beginning of the rollercoaster ride. This is the biggest, scariest hill of them all, that one at the start. You can't even tell if this is a long or short roller coaster yet or even if it is just the coaster in the kiddie park. Here's the truth. You know very, very little right now. So little. You know there is an encapsulated mass on the head of the pancreas. Could be benign. If it is actually pancreatic cancer, the fact that it is described as encapsulated is about as good as it gets! Keep in mind that there are surgeons who do this laparoscopically today. You should be at a cancer center, not a local hospital that does 1 or 2 a year. Very important to know how many they do every year. There is NO harm in proceeding with the next step in testing with the surgeon you are about to see, while researching to learn the best place to have the surgery, assuming it is what it appears to be. Trust me on this.. I've seen some pretty spectacular failures from radiologists over reading what something is on a scan in my time! You also will need to learn about the variations of this procedure. Another reason to be at an academic cancer center because they will be far more likely to have adopted the newest procedures, vs someone in the community who does it the way they learned in residency which may have more long term side effects, etc. Because so much is involved with this procedure, this is vital. We are going to presume that as this is encapsulated, you will be an excellent candidate with an excellent prognosis who will live a long healthy life after this, which is why you want to minimize long term effects as best you can. Anyway, an important lesson I've learned in life is that the world, specifically your world, can turn upside down at a moment's notice. You will do what you must do to survive. There is no alternative on this one. It's happened to me twice. First with breast cancer and then again this summer when they thought a tumor I had removed was a very rare and deadly form of sarcoma. It took several weeks to learn it was actually benign. No one thought it was cancer at first until the pathology department had a look. They sent it to the top expert in the field... which brings my earlier point about getting to someone who sees this all time time. If we had gone by the original pathology, I would have probably had an amputation, radiation and who knows what. That roller coaster turned out to be the one in the kiddie section of the park. Also, if you've seen me post in the past, I do bring up genetics now and then. IF this is actually pancreatic cancer, in my opinion, you MUST get genetic testing. Pancreatic ca is a BRCA gene related illness. This has implications not just for your own risks of other cancers, it also has implications for your relatives. AND, today, we have specific treatments for BRCA related cancers, so it is important for your treatment as well, once again, IF this is what it appears to be at the moment. One step at a time. Start keeping lists as already mentioned. Take notes and bring someone who can take notes to all these consultations. Not necessarily your spouse though it can be. Someone who can keep a clear head and not be too scared to do the job. Everyone needs an advocate by their side (says the woman who never did this LOL, but has played this role many times). If you need to take time off from work, you will do so. Things happen. If you need a long term sub, they will find you one.
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caro
Drama Llama
Refupea 1130
Posts: 5,222
Jun 26, 2014 14:10:36 GMT
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Post by caro on Feb 11, 2017 21:51:24 GMT
I just prayed for you. Big hugs!
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Post by llinin on Feb 11, 2017 21:54:03 GMT
I'm so sorry! I don't have much to add to all the great support on this thread, but there is a fb group that my sister really liked, lots of firsthand information, recovery tips, and caring folks. It is the Whipple Surgery Survivors Group m.facebook.com/groups/250497878309541?tsidTake care, Laura
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Post by kat on Feb 11, 2017 22:10:06 GMT
Keeping you in my prayers.
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Post by k8smom on Feb 11, 2017 22:13:58 GMT
Oh dear, that is a lot to bear. I will be thinking of you and praying for you. My advice would be not to stress out, if at all possible. Let other people take care of you for once, do things you enjoy. All of the other stuff will work out one way or another, whether you obsess over it or not. Think positively, live in the moment, and be kind to yourself. You got this, donna
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gloryjoy
Pearl Clutcher
Posts: 3,332
Jun 26, 2014 12:35:32 GMT
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Post by gloryjoy on Feb 11, 2017 22:15:48 GMT
Prayers and positive thoughts for you.
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Post by Spongemom Scrappants on Feb 11, 2017 22:41:58 GMT
You must feel so overwhelmed right now. And scared. I'm so sorry. It's simple advice, but "take it one day at a time" really does help. Just deal with it all in little steps. Make one decision at a time. Get one thing taken care of. Before long, you will begin to feel more like you are back in charge and not just being bowled over by all the possible negatives. I wish you the best.
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Post by gotranch on Feb 11, 2017 22:45:25 GMT
Prayers for strength and healing as you move through this journey.
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Post by flanz on Feb 11, 2017 23:56:27 GMT
Don't give up hope. My DH was told he had a year to live with stage IV kidney cancer. That was ten years ago this April. The advances being made in cancer are amazing. He has metastasis on his pancreas, liver, lungs, bones, and remaining kidney. Yet, his quality of life is still excellent. YOU FIGHT! It is easy for me to say don't worry about your job. But, truly, this is the time to take care of YOU. They will figure out a sub. File for disability immediately. Let your brother handle your mother. When your friends offer help, take it. I mean this. Take it! Let a friend go with you and your DH to see the oncologist. We took our SIL, who is a nurse. She was able to take notes for us. You have my prayers, dear Pea friend. Dear donna, I second all of this, and more. Great advice from mikklynn and others. I, too, know people who have survived for a very long time with metastases in multiple organs (brain/bones/lungs in the case of a dear friend.) Please focus on your healing and what you need, ASK for what you need, and let the rest go. For now. love from little 'ole me in Calif.
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Post by kckckc on Feb 12, 2017 0:34:28 GMT
I am sorry you are going through all this.
My mother-in-law had the Whipple surgery in 2001 at the age of 69. She is cancer free, doing great, and will celebrate her 85th birthday next week. Please don't give up hope.
Good thoughts and prayers for you.
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Gravity
Pearl Clutcher
Posts: 3,231
Jun 27, 2014 0:29:55 GMT
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Post by Gravity on Feb 12, 2017 0:50:46 GMT
((HUGS)) I will keep you in my thoughts.
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Post by Lexica on Feb 12, 2017 1:08:06 GMT
I know that the outlook for pancreatic cancer can be scary, but I want to tell you my oldest sister was diagnosed with it a couple of years ago. It was just by chance that they found it. She went in for something else and the Xray was taken to address her initial issue, but also encompassed her pancreas. While looking at that Xray, the doctor immediately picked up on a suspicious area in her pancreas.
They immediately changed courses from her original complaint, which could be put on hold, and focused on the pancreas issue. She ended up going to a hospital in Boston, I think it was, to have the surgery performed. It was 100% successful and she has no signs of cancer at all anywhere now. Caught early like yours has been, seems to make a world of difference in the outcome.
Try hard not to worry about how this news is going to affect others and just focus on yourself right now. It sounds as if you are a very giving person and putting yourself first doesn't come naturally to you. It has to now. You focus on yourself and healing your body. Everything else from your job to your scrapbooking will be fine and will be there waiting for you when you are at the other end of this.
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Post by anniefb on Feb 12, 2017 1:23:15 GMT
So sorry to hear you're dealing with this. Sending prayers and a hug your way!
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Post by scrapsuzy on Feb 12, 2017 1:56:56 GMT
My thoughts and prayers are with you.
In addition to what others have said, here's a few tips I've learned from having liver disease (on the transplant list since May): Take advantage first of the friends that offer to help. They want to do something, buy many of them aren't in it for the long haul (or short haul.) That doesn't mean they are bad friends, just normal people who get busy with their own things. For the most part, your family will be there for you the whole journey because, well, they're your family, and that's what family is supposed to do. Never go to the doctor alone. Try to make it the same person each time, and one of you should take notes. Ask questions, and write down any questions you think of in between appointments. (Get a notebook, the cuter, the better.) Get a maid, if the budget allows for it. Even if it is just someone every other week cleaning the bathrooms, kitchen, and changing the bedsheets. A little bit of help is helpful. Find all the restaurants that you can order take-out or delivery from. Then use them. Get used to using services like Amazon Prime or online grocery ordering/in-store pick-up. Amazon Prime doesn't require anyone else to do anything (except bring bags inside). With online ordering, you can place your order, someone at the store packs it, then you can have someone stop by and pick it up. Find some support groups on FB. My transplant center has one that you have there for, and they meet once a month. Didn't really work for me. But when I searched on FB, several came up. I joined a few and found a few that worked for me (and a few that didn't.) The groups are completely private, so you can feel free to share and ask questions you may not even know you wanted to ask. My mom even joined a caregiver group (no patients allowed) and one of my groups is a patient only group. Those groups are my favorite thing about FB right now.
Are you still in Georgia? If so, Piedmont is teamed up with MD Andersen in Texas, and I've heard they are doing great things with pancreatic cancer in particular.
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Post by peano on Feb 12, 2017 2:41:14 GMT
My thoughts are with you as you go through this stressful time. Please keep us posted; we're here for you.
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FurryP
Drama Llama
To pea or not to pea...
Posts: 7,006
Site Supporter
Jun 26, 2014 19:58:26 GMT
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Post by FurryP on Feb 12, 2017 3:02:22 GMT
Prayers for your whole family, especially your mom who needs none of this right now. Sending positive thoughts your way for a smooth but difficult journey on which you about to embark. Keep the faith. You can do it!
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Post by worrywart on Feb 12, 2017 4:03:18 GMT
((((Hugs!)))) and prayers and good thoughts for your health and healing. Take care and take one day at a time.
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Post by scrappinmom3 on Feb 12, 2017 4:59:25 GMT
Good thoughts coming your way.
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Post by donna on Feb 12, 2017 14:39:35 GMT
scrapsuzy I have been living in SC for 13 years now. I wish I were still in Atlanta because Peidmont is an amazing facility. My bil had quadruple bypass there back in September. Thank you for all of your advice. I am sorry to hear about your issues with your liver. melissa I had no idea about the BRCA relationship with pancreatic cancer. I will definitely ask about that on Wednesday even more so because my Mom's sister was just diagnosed with breast cancer. I had some genetic testing done back in Aug 2015 when I had my heart issues but they were checking for genetic Long QT not BRCA. We told our sons yesterday. It was particularly difficult telling my soldier son. He started crying and I just wanted to reach through the screen and hug him. His unit would like to send him home but the Red Cross won't start the process because I am not in the hospital in bad shape. He is due to come home towards the beginning of April. Our other son is in Atlanta and took it better. He was just here this week making plans to move back home to get some more schooling. It will be very helpful having him here through this process. I adore my boys. Somehow my dh and I raised two young men that are a joy to be around. I am so glad I started this thread yesterday. You all have helped me so much with your comments! I have missed you guys!
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Deleted
Posts: 0
Jun 10, 2024 2:08:02 GMT
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Post by Deleted on Feb 12, 2017 14:43:10 GMT
I am so sorry that you're dealing with this. Deep breath and focus on today. Tomorrow, focus on tomorrow.
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Post by christine58 on Feb 14, 2017 20:30:02 GMT
donna good luck at the oncologist tomorrow~~
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Deleted
Posts: 0
Jun 10, 2024 2:08:02 GMT
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Post by Deleted on Feb 14, 2017 20:31:45 GMT
sending lots of prayers.
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River
Pearl Clutcher
Posts: 3,517
Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Feb 14, 2017 20:50:03 GMT
My thoughts and prayers are with you as you go for your appointment tomorrow. Please keep us updated as you feel up to it.
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Post by deshacrafts on Feb 14, 2017 20:58:35 GMT
Sending you good thoughts.
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Post by destined2bmom on Feb 14, 2017 21:22:55 GMT
Prayers and hugs for tomorrow's doctor appointment.
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Post by straggler on Feb 14, 2017 21:27:45 GMT
Donna, lifting you in prayer. I pray for peace, healing and comfort for you and all your family!
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