Congratulations on your recovery but also your amazing strength and attitude 🙏❣️. I was diagnosed with stage 4 appendix cancer in 2021. Had debulking surgery to remove a mass, my ovaries and a hysterectomy. 6 months chemo and immunotherapy followed then HIPEC + CRS + peritonectomy. I have been 2 years NED with quarterly scanning. I’ve been told I’m not cured.
You are absolutely right how hard the mental side of this illness, diagnosis and treatment are.
We are so lucky to have such better treatments and they keep improving. Prayers up for continued health! 🙏❣️
It took my team almost 3 months after initial debulking surgery to decide my primary was appendiceal not ovarian. A very nervous wait. I then had 6 months of Folfiri + Avastin then HIPEC + Cytoreductive surgery + Peritonectomy. I’ve been NED for 2 years since HIPEC. Don’t be scared of HIPEC etc if you get a good surgeon who has done it a lot. While it was major invasive surgery it is very much worth it if you qualify. The pain management in hospital is great. My surgery was 12 hours including the 3 hours of hot chemo and I then spent about 5 days in ICU and 4 on the general ward. They got me moving the day they woke me up and that movement helps with recovery. All the best!
Wow. Thank you for talking about this to me. Very scary, but you got through all right. It helps to hear this. I already had debulking surgery but it sounds like I might need it again BEFORE HIPEC. Will see when I actually talk to the doctors. Very hard waiting as you said. Best to you too!
Wow. Thank you for talking about this to me. Very scary, but you got through all right. It helps to hear this. I already had debulking surgery but it sounds like I might need it again BEFORE HIPEC. Will see when I actually talk to the doctors. Very hard waiting as you said. Best to you too!
Just to remember your initial surgeon didn’t do anything wrong: I too started off with a gynaecologist surgeon. One of the best. Once the cancer has spread out from the primary site it is so difficult to tell the difference between ovarian and appendiceal cancers, even with biopsies etc. The treatment course is different though. My surgeon worked with a peer group at my hospital on the biopsy results and genome sequencing to make the call before referring me to an oncologist. Everything moved very very fast from there and I started fortnightly chemo and immunotherapy with a 46 hour take home pump (with colon cancer protocols) a week after my port was installed. Please do keep us updated with your journey 🙏❣️
Hi no I didn’t have HIPEC in fact it’s wasn’t even mentioned to me.. I’m meeting my oncologist on 20th August next so I’ll be sure to ask him about it… it sounds pretty full on. I had chemotherapy from December to April and seemingly I’m in remission… trying to get back to normal as much as possible … hope you’re doing well x
Dear @shivy
I think you are on the right track. I would ask about HIPEC at your next meeting. Get a second opinion if you don’t feel you are getting what you need in the way of information. You should insist on getting the best and latest treatment as it may make a huge difference down the road. Also, just wondering why your meeting isn’t sooner?
Take care.
Hi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
Hi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
Bless your heart, no one has a hand book, just just take it one day at a time and thank God for the time you have. Do something you have always wanted to do. It doesn't matter what you look like or what people may think, you are stronger than they will ever know and everyday is a precious gift. Don't just squander it. My uncle just got diagnosed with renal cell carcinoma and I personally think it should be the push people need to really show their appreciation for their new found life. You're beautiful inside and out. Live a beautiful life
Hi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
@danyeltardy12 Hello, and welcome to Mayo Clinic Connect. I'm relieved to know that you are 5 years out from a Stage 4 diagnosis of ovarian/peritoneal cancer. I think many of us can relate to your daily struggle of being a cancer survivor and your worries about recurrence. I was first diagnosed with endometrial cancer in 2019 and so I would be 5 years out from that initial diagnosis but I had a recurrence in 2021. For me, that recurrence was almost more difficult to emotionally deal with than the initial diagnosis. I found that once I talked with the doctors and had a treatment plan (in my case it was radiation therapy) I began to feel better. But once I finished that treatment and went back to active surveillance checks of every 4-6 months the worries came back. I have my next set of appointments during the week of November 18 when I will have a CT scan with contrast and a physical examination. That's just two weeks away.
Are you now 44-years-old? If I'm doing the math correctly then you were 39 years old when first diagnosed? Is that correct? I know that life isn't always "fair" and so cancer at 39 years old seems, well, unfair to me. I was 67-years-old when I was diagnosed and by that time felt that although I was healthy (I thought) I'd lived a good life.
Do you have children? Have you been able to return to work given the memory problems you described? What kinds of activities or things do you do to take care of you?
Hi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
Good morning:
Cancer treatment can be rough. As a caregiver of a survivor I can attest that the recovery process can be a challenge. It can take a long time. Some changes can be reversed more quickly than others but as another person who posted on this thread indicated, be grateful for what you have—your life and hope for the future. My advice to you is to be kind to yourself and be patient. Eat healthily, get lots of rest, exercise to speed recovery and get involved in some new activities or travel to shift your thoughts in a more positive direction.
All the best.
Good morning:
Cancer treatment can be rough. As a caregiver of a survivor I can attest that the recovery process can be a challenge. It can take a long time. Some changes can be reversed more quickly than others but as another person who posted on this thread indicated, be grateful for what you have—your life and hope for the future. My advice to you is to be kind to yourself and be patient. Eat healthily, get lots of rest, exercise to speed recovery and get involved in some new activities or travel to shift your thoughts in a more positive direction.
All the best.
Thank you. I never was too kind to myself before a cancer. That's a whole another issue but I'm not a work on. Definitely grateful and blessed in my life it's just hard. Thank you so much and have a wonderful day
Hi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
Thank you for your story. You inspired me. I, too, have peritoneal cancer stage 4, diagnosed 2 years ago. Initial prognosis not good. I thought, prayed a lot about life, death, God, family. Radiation and chemotherapy were an agonizing part of my existence as were complications requiring hospitalizations.
Now on break from treatment, I am slowly regaining strength. I don't look the same, can't do much that I could before. I am content to live a quiet life, enjoying small pleasures. I feel blessed to have this time to be with my husband who has Alzheimers. As another wrote here, this helps us to appreciate life. So many entered my life to help me. Gratitude has taken on a new meaning.
My heart and prayers go out to you.
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Thank you for answering me. It does seem to help hearing other people who have gone through the same thing.
Yes, prayers to you and everyone with cancer.
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2 ReactionsWow. Thank you for talking about this to me. Very scary, but you got through all right. It helps to hear this. I already had debulking surgery but it sounds like I might need it again BEFORE HIPEC. Will see when I actually talk to the doctors. Very hard waiting as you said. Best to you too!
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2 ReactionsJust to remember your initial surgeon didn’t do anything wrong: I too started off with a gynaecologist surgeon. One of the best. Once the cancer has spread out from the primary site it is so difficult to tell the difference between ovarian and appendiceal cancers, even with biopsies etc. The treatment course is different though. My surgeon worked with a peer group at my hospital on the biopsy results and genome sequencing to make the call before referring me to an oncologist. Everything moved very very fast from there and I started fortnightly chemo and immunotherapy with a 46 hour take home pump (with colon cancer protocols) a week after my port was installed. Please do keep us updated with your journey 🙏❣️
Dear @shivy
I think you are on the right track. I would ask about HIPEC at your next meeting. Get a second opinion if you don’t feel you are getting what you need in the way of information. You should insist on getting the best and latest treatment as it may make a huge difference down the road. Also, just wondering why your meeting isn’t sooner?
Take care.
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Hug
1 ReactionHi, My name is Danyel. I am 5 years remission in December this year from Peritoneal/ ovarian cancer stage 4. I struggle everyday with being a survivor, because I'm so scared of reoccurrence and my hair grew back so thin and my eyebrows and eyelashes. So sure my confidence is gone at 44 years old. The weight gain I still have pain in my legs for some reason. And short-term memory and long-term is s***. This is my first time even speaking of this on any support or reply groups. No one ever gave me any guidance on what to do after life after cancer. How are you doing? Did you or do you have short-term and long-term disability years still after remission. Thank you for your time hope you're having a wonderful day
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8 ReactionsBless your heart, no one has a hand book, just just take it one day at a time and thank God for the time you have. Do something you have always wanted to do. It doesn't matter what you look like or what people may think, you are stronger than they will ever know and everyday is a precious gift. Don't just squander it. My uncle just got diagnosed with renal cell carcinoma and I personally think it should be the push people need to really show their appreciation for their new found life. You're beautiful inside and out. Live a beautiful life
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Helpful -
Hug
5 Reactions@danyeltardy12 Hello, and welcome to Mayo Clinic Connect. I'm relieved to know that you are 5 years out from a Stage 4 diagnosis of ovarian/peritoneal cancer. I think many of us can relate to your daily struggle of being a cancer survivor and your worries about recurrence. I was first diagnosed with endometrial cancer in 2019 and so I would be 5 years out from that initial diagnosis but I had a recurrence in 2021. For me, that recurrence was almost more difficult to emotionally deal with than the initial diagnosis. I found that once I talked with the doctors and had a treatment plan (in my case it was radiation therapy) I began to feel better. But once I finished that treatment and went back to active surveillance checks of every 4-6 months the worries came back. I have my next set of appointments during the week of November 18 when I will have a CT scan with contrast and a physical examination. That's just two weeks away.
Are you now 44-years-old? If I'm doing the math correctly then you were 39 years old when first diagnosed? Is that correct? I know that life isn't always "fair" and so cancer at 39 years old seems, well, unfair to me. I was 67-years-old when I was diagnosed and by that time felt that although I was healthy (I thought) I'd lived a good life.
Do you have children? Have you been able to return to work given the memory problems you described? What kinds of activities or things do you do to take care of you?
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Helpful -
Hug
7 ReactionsGood morning:
Cancer treatment can be rough. As a caregiver of a survivor I can attest that the recovery process can be a challenge. It can take a long time. Some changes can be reversed more quickly than others but as another person who posted on this thread indicated, be grateful for what you have—your life and hope for the future. My advice to you is to be kind to yourself and be patient. Eat healthily, get lots of rest, exercise to speed recovery and get involved in some new activities or travel to shift your thoughts in a more positive direction.
All the best.
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Helpful -
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1 ReactionThank you. I never was too kind to myself before a cancer. That's a whole another issue but I'm not a work on. Definitely grateful and blessed in my life it's just hard. Thank you so much and have a wonderful day
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4 ReactionsThank you for your story. You inspired me. I, too, have peritoneal cancer stage 4, diagnosed 2 years ago. Initial prognosis not good. I thought, prayed a lot about life, death, God, family. Radiation and chemotherapy were an agonizing part of my existence as were complications requiring hospitalizations.
Now on break from treatment, I am slowly regaining strength. I don't look the same, can't do much that I could before. I am content to live a quiet life, enjoying small pleasures. I feel blessed to have this time to be with my husband who has Alzheimers. As another wrote here, this helps us to appreciate life. So many entered my life to help me. Gratitude has taken on a new meaning.
My heart and prayers go out to you.
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Helpful -
Hug
9 Reactions