Has anyone been able to have surgery for tumor in the tail?

Posted by vlny2018 @vlny2018, Jul 3 12:08pm

Has anyone been able to have surgery for tumor in the tail of the pancreas, stage 4, metastasized to the lymph nodes. My husband's oncologist says that sugery isn't an option ever for him. Just chemo every two weeks until folfirinox doesn't work or becomes too toxic. Then some other chemo mix, then … Is this true? This is so discouraging. If the tumors shrink, can't they do more? My husband has had the cancer go into his lymph nodes close to his kidney and the pressure was closing the tube connecting to his bladder, and now has a stint in place to keep kidney function, which it has done.

We have an appointment with the Mayo Clinic in Rochester in August. My husband just had his 4th treatment and will be having a PET scan the end of July. Other than this, he has been extremely healthy, no bad habits, exercises everyday, and eats clean. This is just a huge punch in the gut, as I'm sure is everyone's experience.

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@gamaryanne

I might only add that having things to look forward to and being engaged with people helps a lot. No matter what we are going through, there is always someone going through something equally painful. When we pray for others it reminds us of how much we have to be grateful for.
There is always some place that can use your volunteer time. Even if just writing cards to others! Pls check with your Church. I find that the more I am involved with something besides myself, the less I feel depressed. 💜

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Great advice Maryanne if the time and energy can be afforded! I used to tell my son to volunteer when he was a teenager and feeling blue; and it resulted in helping his mood and his college application!. I volunteered as a board member for the Bolsa Chica Land Trust during my first round of chemo with 5FU in 2023. I started losing my hair with my 2nd round of chemo, abraxane, early this year and I quit recently for reasons not related to cancer. Maybe there’s a light volunteer task in the church you belong to which wouldn’t require much commitment or energy like serving donuts after service on Sundays (our church does this) or even helping out with just buying a box of donuts to donate. I always told my children that helping others takes the focus off ourselves I think we are too focused on ourselves, sometimes.

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@joiedevivre

You remember your French 🙂 Thank you for taking the time to share. I am in this forum without my husband knowing - he is very private and few people know of his illness. This support helps me alot and I then feel I can be of more help to my husband. We are Christians and faith helps. The surgery set my husband back quite a bit - he lost 10kg and he was not a big man to start off with, he had infection, then the Folfirinox gave him really bad side effects and it was a fight to put back on the weight. Now, a year after surgery, he is eating much better and exercising. We live in hot climes but walks are a thing. The chemo is ongoing but if it keeps the cancer away I can live with that. I have to help him live with that.

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Yes, I do continue to watch French movies with subtitles and I find it a good way to help me keep practicing my French a tiny bit. The daughter of my BFF (she passed in 2022 of gall bladder cancer) lives in the south of France and has invited me many times, but alas I hate to fly. It was on my bucket list to work with a therapist over my fear of flying so that I could visit some of my friends in other states and countries; however it is the last thing on my bucket list!! That’s a beautiful phrase though - the joy of life.
You are a great guiding light for your husband! I really admire you for that and I completely understand where you are coming from. Just a few weeks ago drs thought my husband might have lung cancer, but it’s some lung disease (he’s currently in the hospital) that drs are still trying to figure out. He’s a bit on the negative side and doesn’t converse with his family much and he says he doesn’t want to worry them, however I converse daily through text with his brother - a retired dr to make sure they know what’s going on with him and as a double check on the treatment he’s getting. But yes, I can understand when a spouse needs our up lifting and I’m so glad you are on this forum. It provides a discourse for helping others as well as being able to learn from others.
It sounds like he’s headed in the right direction. The GA chemo works very well on liver lesions and I imagine on tumors as well. The smaller one (1 cm) disappeared and the larger one (about 1.5 or 1.7 cm) shrunk to 0.9 cm and I recently had that radiated with MRIdean, so I’m hoping I decimated it; I’ll find out by next appointment in early December. These don’t light up on my PET scan. Yes, the info we get between drs, surgeons, or radiologists can be conflicting. Just be aware you can always seek out the opinion of another oncologist as just a consultation visit without having to change your actual oncologist, if desired. So glad your husband is improving and I wish you both well on this journey!

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@mnewland99

Yes, I do continue to watch French movies with subtitles and I find it a good way to help me keep practicing my French a tiny bit. The daughter of my BFF (she passed in 2022 of gall bladder cancer) lives in the south of France and has invited me many times, but alas I hate to fly. It was on my bucket list to work with a therapist over my fear of flying so that I could visit some of my friends in other states and countries; however it is the last thing on my bucket list!! That’s a beautiful phrase though - the joy of life.
You are a great guiding light for your husband! I really admire you for that and I completely understand where you are coming from. Just a few weeks ago drs thought my husband might have lung cancer, but it’s some lung disease (he’s currently in the hospital) that drs are still trying to figure out. He’s a bit on the negative side and doesn’t converse with his family much and he says he doesn’t want to worry them, however I converse daily through text with his brother - a retired dr to make sure they know what’s going on with him and as a double check on the treatment he’s getting. But yes, I can understand when a spouse needs our up lifting and I’m so glad you are on this forum. It provides a discourse for helping others as well as being able to learn from others.
It sounds like he’s headed in the right direction. The GA chemo works very well on liver lesions and I imagine on tumors as well. The smaller one (1 cm) disappeared and the larger one (about 1.5 or 1.7 cm) shrunk to 0.9 cm and I recently had that radiated with MRIdean, so I’m hoping I decimated it; I’ll find out by next appointment in early December. These don’t light up on my PET scan. Yes, the info we get between drs, surgeons, or radiologists can be conflicting. Just be aware you can always seek out the opinion of another oncologist as just a consultation visit without having to change your actual oncologist, if desired. So glad your husband is improving and I wish you both well on this journey!

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Thank you very much. You sound like you have a whole lot on your plate and I thank you for finding the time to reply and encourage. I go to bed at night overwhelmed with fear and wake up the same - fear of losing my husband whom I have known since I was 15 (decades ago!). You should work on your fear of flying, if you can. I still fear flying but breathing exercises and some meds help. Flying lets me travel and see places.

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Hi joiedevivre,
How are you and your husband doing?
My husband is out of the hospital now and on the slow mend. By the way, I thrive as being a multitasker so I often do have a lot on my plate. The change in energy level since I got cancer has been difficult to accept as my new normal since I was quite the multitasker so I understand where your husband coming from with his new version of himself being a bit weaker. Take solace in the fact that the weakness means the body is trying to use its own defenses to fight the cancer.
Did you meet your husband in high school? You have been with him a very long time and I understand the fear that goes along with the thought that you might not get to grow old together as you had planned. I met my husband when I was 22 but may have well just bern 18! I went to an all girls Catholic school and didn’t date in high school with the exception of 1 boy I was fixed up with whom I didn’t realize at the time that I was on a date until years later! I thought we were just friends. I always say my husband raised me! Wright was also in the hospital 1 month ago with pneumonia and changes on his CT scan which drs thought MIGHT be cancer (but they are not). During that time It had a lot of anxiety about the possibility that he actually might go before me. Right now as with many of us we don’t know our timeline. I would advise that you grow those connections with your children (if you have) and with friends and get involved with activities with them or at the senior center to make YOU happy. You will need these connections when that time comes. Faith in a higher power is another source of strength. With my mom and dad it was very difficult to lose them, to ease the pain I try and focus on the fact that they are relieved off their suffering they incurred while sick (my dad had pancreatic cancer and my mom had dementia and a stroke). Also, try and focus on the good times you have now with your husband and create a bucket list. Being a caregiver is much more difficult than non caregivers realize. I commend you for that and am praying for you. Please let me know how you are doing. Also, Mayo did a spotlight interview on me; check it out maybe it provides some inspiration?

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@mnewland99

Hi joiedevivre,
How are you and your husband doing?
My husband is out of the hospital now and on the slow mend. By the way, I thrive as being a multitasker so I often do have a lot on my plate. The change in energy level since I got cancer has been difficult to accept as my new normal since I was quite the multitasker so I understand where your husband coming from with his new version of himself being a bit weaker. Take solace in the fact that the weakness means the body is trying to use its own defenses to fight the cancer.
Did you meet your husband in high school? You have been with him a very long time and I understand the fear that goes along with the thought that you might not get to grow old together as you had planned. I met my husband when I was 22 but may have well just bern 18! I went to an all girls Catholic school and didn’t date in high school with the exception of 1 boy I was fixed up with whom I didn’t realize at the time that I was on a date until years later! I thought we were just friends. I always say my husband raised me! Wright was also in the hospital 1 month ago with pneumonia and changes on his CT scan which drs thought MIGHT be cancer (but they are not). During that time It had a lot of anxiety about the possibility that he actually might go before me. Right now as with many of us we don’t know our timeline. I would advise that you grow those connections with your children (if you have) and with friends and get involved with activities with them or at the senior center to make YOU happy. You will need these connections when that time comes. Faith in a higher power is another source of strength. With my mom and dad it was very difficult to lose them, to ease the pain I try and focus on the fact that they are relieved off their suffering they incurred while sick (my dad had pancreatic cancer and my mom had dementia and a stroke). Also, try and focus on the good times you have now with your husband and create a bucket list. Being a caregiver is much more difficult than non caregivers realize. I commend you for that and am praying for you. Please let me know how you are doing. Also, Mayo did a spotlight interview on me; check it out maybe it provides some inspiration?

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I read the spotlight interview - can put a face to the name. I live in SE Asia. I hope you and your husband are doing well. My husband (to me because he cannot see it!) gets stronger every day - not by leaps and bounds but small improvements. Still on Gem-Abraxane (9th month) and with few side effects, for which we are thankful. If you ever get on a plane to my part of the world, message me yes? Thank you for your prayers and I will remember you in mine.

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@joiedevivre

I read the spotlight interview - can put a face to the name. I live in SE Asia. I hope you and your husband are doing well. My husband (to me because he cannot see it!) gets stronger every day - not by leaps and bounds but small improvements. Still on Gem-Abraxane (9th month) and with few side effects, for which we are thankful. If you ever get on a plane to my part of the world, message me yes? Thank you for your prayers and I will remember you in mine.

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@joiedevivre so glad to hear your husband is doing better! I’ll be praying for both of you and I sincerely wish you many good days ahead.

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My wife just diagnosed with similar conditions. Haven’t started chemo yet. See your post was about 5 months ago, wondering how it’s been going since? Wishing you well,
All the best,

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I was diagnosed c adenocarcinoma of the pancreas x 6 mo ago. Diagnosis was challenging as many GP's focus on other maladies before ordering a CT. Imagery revealed it was located in the tail c no ductal intrusion. Surgery was recommended (robotic) and I've had a pancreatic tail resection and splenectomy. During the surgery it was discovered that the tumor had migrated to the stomach and according to the surgeon CT is not always accurate. Recovery p surgery was difficult and since the procedure I have completed six (6) rounds (six more to go) of folfirinox chemotherapy due to the threat of micro -metastasis despite negative margins. Awaiting PET results to determine efficacy but will be prepared for a Plan B. Learning of ongoing stage 2 trials for potential pancreatic CA vaccines and suggest that everyone remain vigilant in regard to these trials. Anyone experiencing CA of ANY type has my empathy and best wishes.

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Exactly the same situation as my husband. Chemo is tough but manageable for him. He’s had a year of chemo. He tested for BRCA and gene mutation to see if there are alternatives to chemo - no luck. But so far no cancerous activity anywhere. Hang in there!

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