At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
@livedinrochester. Go ahead and contact your previous GYN oncologist. I will save you lots of time and stress. Plus, if the doctor made a mistake, your phone call will be a wake-up lesson for him. Hopefully, it will prompt them to be extra careful next time. Was this doctor involved in your surgery at all?
As for you, you’ve already started on the way to self-advocacy. Good job!
What does HIPEC stand for?
At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
I was diagnosed with peritoneal carsanomatosis . I had 8 chemo treatments and surgery . I am doing well. I am in a wait and see stage now as some growths that were left after surgery have grown and some have lessened in size. I have CIPN and that is getting better. I have an AFO brace and I use a cane when I’m out . It has been a difficult road but with good medical team and family and friends as support I feel very blessed
If have a dear friend who grew up in Scotland, and she's told me countless times that here in the US people should count their lucky stars for our healthcare system, rather than complain about it! And here, you certainly confirm that. I'm wishing the best for you on Dec 4th. I just got a call from my cardiologist, and I've been cleared for surgery on Nov 30th. Whew - a big hurdle to clear.... Love and prayers right back to you! Ruth
HI Elle! Well, it must be tough to not have faith in your oncologist.... That makes this whole thing all the more stressful. I know I'm one of the lucky ones. While I live near Philadelphia, I'm only a few hours drive from Sloan Kettering in New York City, which is the best cancer center in the US. My surgeon is the top ovarian cancer doctor - and he works with a whole team, so I can relax into their expertise with confidence that they know TONS more than most (and certainly me!) about the best path forward. I count my lucky stars every day for that. And, yes, I sure did have ascites - I looked several months pregnant, and they aspirated almost 3 liters of fluid. That was in the very beginning, but no ascites anymore, especially now that the cancer is mostly gone. I still have a distended belly, but that could be all the Halloween candy I've been scarfing down. I have been comforting myself with food, which I know is not a good idea. I've added a good 10 lb (how many stones is that??) since diagnosis. It's also because my exercise has really dropped off. Fortunately, my lungs have remained clear the whole time. You and I are contemporaries! I'm just turning 70 myself. While I've only been to England a couple of times, from what I hear, Nottingham is a lovely place. I just Googled it!! OMG. Gorgeous. Stay strong, Elle. Best--Ruth
Hi Ruth Thankyou so much for your reply and hope you're doing ok.
I'm still really tired ,side effects from the radiotherapy.
Did they sort out your breathlessness and your op?
I go to hospital on Monday for a drain to be taken out,I had it put in in June,waste of time as the acites stopped and I've been waiting months for it to be removed!
You sound like you have a fabulous health care system over there,you're very lucky,the NHS we have is on its knees and not very good.
I go on the 4/December to the cancer hospital to get to know the outcome of the radiotherapy ....fingers crossed for me ...love and prayers xx
Enlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
Thankyou for your reply,it is a hard fight and totally life changing,I don't feel like the same person,always so tired...
I have recently had my 70th birthday in September which was great,and more recently celebrated my son's 50th,which im most grateful for,there was a time when I didn't think I would make either.
I live on my own but moved to a lovely village to be near my daughter in Nottinghamshire England,Philadelphia sounds lovely 😊
I've found in my journey that I don't have alot of faith in my oncologist and had to source a lot myself,I don't trust him,he's very vague.
Have you suffered from acites? fluid in the abdomen and lungs?
Take great care,keep fighting 💪 xx
HI Elle! Well, it must be tough to not have faith in your oncologist.... That makes this whole thing all the more stressful. I know I'm one of the lucky ones. While I live near Philadelphia, I'm only a few hours drive from Sloan Kettering in New York City, which is the best cancer center in the US. My surgeon is the top ovarian cancer doctor - and he works with a whole team, so I can relax into their expertise with confidence that they know TONS more than most (and certainly me!) about the best path forward. I count my lucky stars every day for that. And, yes, I sure did have ascites - I looked several months pregnant, and they aspirated almost 3 liters of fluid. That was in the very beginning, but no ascites anymore, especially now that the cancer is mostly gone. I still have a distended belly, but that could be all the Halloween candy I've been scarfing down. I have been comforting myself with food, which I know is not a good idea. I've added a good 10 lb (how many stones is that??) since diagnosis. It's also because my exercise has really dropped off. Fortunately, my lungs have remained clear the whole time. You and I are contemporaries! I'm just turning 70 myself. While I've only been to England a couple of times, from what I hear, Nottingham is a lovely place. I just Googled it!! OMG. Gorgeous. Stay strong, Elle. Best--Ruth
Thank you, dene - I wish you and your dear wife strength and courage as you face this journey together. It's a tough, tough road. We all have the benefit of decades of progress in the sciences for this disease, genotyping being an important one. My understanding is that the more mutations you have, the better the chance of something "getting in" to target and kill those cancer cells. So... yeah... for your wife, she'll got a higher hill to climb with no mutations at all. But there's still hope for her! I'm hearing more and more stories about women who have survived this 10 years and longer. Hang onto that. When I had my first exploratory laparoscopy I enrolled in a study with Sloan Kettering that looked at over 500 mutations/alterations, and the results show that I have 4 mutations: TP53, RD1, PRDM14 and STK40. I have two alterations: FGFR1 and CCNE1, both of which are likely to respond to immunotherapy. I believe that treatment will be down the road a bit, once I'm past surgery and the post surgery chemo. Best to you both! Ruth
Enlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
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@livedinrochester. Go ahead and contact your previous GYN oncologist. I will save you lots of time and stress. Plus, if the doctor made a mistake, your phone call will be a wake-up lesson for him. Hopefully, it will prompt them to be extra careful next time. Was this doctor involved in your surgery at all?
As for you, you’ve already started on the way to self-advocacy. Good job!
What does HIPEC stand for?
At 72 (MPLS,MN) I thought I had ovarian cancer but at surgery it turned out to be Low-grade appendiceal mucinous neoplasm (LAMN). I had my spleen removed & appendix. Now I see in my file peritoneal cancer. With it not being Ovarian my GYN Oncologist is out of the picture and I have an appt with a surgeon & Gastro oncologist. I am sacred to death. Have to wait a week to see what is going on. NOT ready for more stress and anxiety. I suspect I will have HIPEC but that also sounds awful. Has anyone had this?
thank-you & God Bless.
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1 ReactionI was diagnosed with peritoneal carsanomatosis . I had 8 chemo treatments and surgery . I am doing well. I am in a wait and see stage now as some growths that were left after surgery have grown and some have lessened in size. I have CIPN and that is getting better. I have an AFO brace and I use a cane when I’m out . It has been a difficult road but with good medical team and family and friends as support I feel very blessed
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4 ReactionsHi yes I’ve been diagnosed with peritoneal cancer
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2 ReactionsIf have a dear friend who grew up in Scotland, and she's told me countless times that here in the US people should count their lucky stars for our healthcare system, rather than complain about it! And here, you certainly confirm that. I'm wishing the best for you on Dec 4th. I just got a call from my cardiologist, and I've been cleared for surgery on Nov 30th. Whew - a big hurdle to clear.... Love and prayers right back to you! Ruth
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1 ReactionHi Ruth Thankyou so much for your reply and hope you're doing ok.
I'm still really tired ,side effects from the radiotherapy.
Did they sort out your breathlessness and your op?
I go to hospital on Monday for a drain to be taken out,I had it put in in June,waste of time as the acites stopped and I've been waiting months for it to be removed!
You sound like you have a fabulous health care system over there,you're very lucky,the NHS we have is on its knees and not very good.
I go on the 4/December to the cancer hospital to get to know the outcome of the radiotherapy ....fingers crossed for me ...love and prayers xx
I certainly will!!
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1 ReactionIt would be interesting to hear what your HRD test results reveal if you care to share.
HI Elle! Well, it must be tough to not have faith in your oncologist.... That makes this whole thing all the more stressful. I know I'm one of the lucky ones. While I live near Philadelphia, I'm only a few hours drive from Sloan Kettering in New York City, which is the best cancer center in the US. My surgeon is the top ovarian cancer doctor - and he works with a whole team, so I can relax into their expertise with confidence that they know TONS more than most (and certainly me!) about the best path forward. I count my lucky stars every day for that. And, yes, I sure did have ascites - I looked several months pregnant, and they aspirated almost 3 liters of fluid. That was in the very beginning, but no ascites anymore, especially now that the cancer is mostly gone. I still have a distended belly, but that could be all the Halloween candy I've been scarfing down. I have been comforting myself with food, which I know is not a good idea. I've added a good 10 lb (how many stones is that??) since diagnosis. It's also because my exercise has really dropped off. Fortunately, my lungs have remained clear the whole time. You and I are contemporaries! I'm just turning 70 myself. While I've only been to England a couple of times, from what I hear, Nottingham is a lovely place. I just Googled it!! OMG. Gorgeous. Stay strong, Elle. Best--Ruth
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2 ReactionsEnlightening! Thank you for taking time to respond to me. We will take this info to our Onc & see what he says. He’s wonderful & has his heart in each of his patients.
Thank you so very much Ruth. Best always to you as well.
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