my partner's diagnosis and surgery
I'm nervous about her coming home because I really have no idea how able she will be to do simple things; how much help she'll need and all that.
Comments
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home nursing help
NY, my mother went through the major debulking surgery and chemo at age 78, and she's still here, almost 81. You and your partner can do this, but it will take a team. That surgery is a bear, and recovery takes a while. When she comes hme, make sure the dr orders home health care nurses and have them come as often as you can. Also line up friends and relatives to check on her during the day for the first couple of weeks. She will be weak, but will start getting stronger after that.
My best caregiver advice is to take one day at a time. Right now, it's all about surgery recovery. You'll have plenty of time to worry about chemo later. Good luck with this day.0 -
Post-op weepinessBarbara53 said:home nursing help
NY, my mother went through the major debulking surgery and chemo at age 78, and she's still here, almost 81. You and your partner can do this, but it will take a team. That surgery is a bear, and recovery takes a while. When she comes hme, make sure the dr orders home health care nurses and have them come as often as you can. Also line up friends and relatives to check on her during the day for the first couple of weeks. She will be weak, but will start getting stronger after that.
My best caregiver advice is to take one day at a time. Right now, it's all about surgery recovery. You'll have plenty of time to worry about chemo later. Good luck with this day.
I just want to say that if you partner gets weepy, you should know that crying goes with the territory after this kind of diagnosis/surgery. There is a LOT of hormonal shifting going on and crying seems to be something that is going to happen even if the person is usually optimistic.
If someone was around when I got into crying mode, it was better if they didn't try to say anything to cheer me up. I felt better if they just sat with me and let me cry.
I cried a lot and always felt better after crying but I wanted to be alone when I did my crying. I suspect that being on narcotics had something to do with me being weepy. The day after I stopped the painkillers "cold turkey," I had a real roller coaster of a day with lots of tears and irritability.
Maybe you won't have to deal with this. It seems like a lot of people are uncomfortable around someone who is crying and want them to stop. So they say all kinds of nonsense, thinking that if they say the right thing, the crying will stop. The crying stops when the person is done crying. Period.
Carolen0 -
determination
Your partner's determination and overall health besides the cancer will make a huge difference in recovery from surgery, chemo, and the emotional impact of cancer. My mom was diagnosed at age 62 with PPC spread to the omentum, and seeding in the abdominal cavity. She also had mets to the right lung by way of cancerous fluid spreading to the pleural cavity around the lung. No tumors there, but the fluid caused a stage IV diagnosis. Mom's cancer is treated as a chronic disease. Some times are better than others, but she keeps beating the odds.
I know some women personally who have ovarian cancer that spread only within their abdomen and they experience long remissions and their quality of life is excellent most of the time. Keep hope alive. Try not to look too far into the future. Make sure your partner has the BEST gyno oncologist in your area. Don't settle for less. Optimal debulking surgery where all visible cancer is removed is a huge prognostic indicator, from what I have read.
Hope this helps.
Eileen0 -
Outlook
Your partner is as well off as she can be at this point. The fact that all visible cancer was removed is ideal. I had a less successful surgery two years ago. There were still tumors that could not be removed that were larger than 1 cm. Yet, I am here and doing great! Feel better than I have in years and am very active. She won't want to do much when she gets home. I don't necessarily believe a home health nurse is necessary as long as someone can be with her. She will want to sleep a lot. It would be best if someone could prepare food for her to keep it available. I would highly recommend getting a raised toilet seat, as getting up and down is tough for awhile. She may also need a wedge pillow, so she can lie down with her upper body raised. It's pretty tough to lie flat for awhile.0 -
After surgery, I was
After surgery, I was diagnosed either UPSC 4B or OVCA 3C (ambiguous origin: my gyn onc and hospital pathologist had different opinions - moot point in a way, since the treatment and prognosis are same. Everything that could be taken out without impacting survival was taken out. My cancer was all over the place. The surgery report says, omentum turned into a solid sheet of cancer nodules, and cancer nodules studded all over the place, over the surface on intestines, around colon, on the pelvic walls, etc. A lime sized tumor wrapped around the colon could not be taken out, so was left behind. This was a pretty bad start, as you can imagine.
However, this story ends on a high note so far.....
I may be an exceptional case, but here is how it went for me.
* Right from the beginning, I did not need any pain medication.
* came home two days after this surgery
* I only needed help to get up from a chair or a bed due to the extensive abdominal incision. Actually, I could this do on my own even without help, but it was easier if somebody held my back so that I could ease the pressure on my abdominal area.
* 5 days after the surgery, I made myself a pot of soup, and cleaned the kitchen.
* 8 days after the surgery, I went to an integrative doctor to get an accupuncture. Then we went out for dinner and walked around the mall (it was winter so we went to the mall for exercise). Oh, we also went grocery shopping.
* Within two weeks, I started to walk about an hour and half (at a much slower pace than usual, I have to admit) at the mall. one month after the surgery, I was already walking total 4-5 miles a day everyday.
* 3 weeks after I started chemo: weekly infusion, straight 18 weeks, no break.
* had no chemo side effects other than hair falling out and blood count tanking. Did not take a single anti nausea pill they prescribed. No fatigue. No neuropathy. No mood swings. No chemo brain.
* exercised 1- 1.5 hours a day all throughout chemo (aerobics, though lower intensity than before).
* at the end of the 18th week, I was declared to be in remission: CA 125 was 15, no trace of tumor on CT/PET scan. This was unexpected. A good friend of mine who is a ob/gyn thought that given where I started, I would probably need additional treatment beyond the initial standard package of 6 cycles (18 weeks) of chemo.
********************************
I know I am probably in the exceptional case group. I am not saying all this to brag (who would want to brag about the most advanced stage cancer diagnosis and treatment!!!!!). I am sharing this so that people know that there is a very wide range of responses and reactions. It's not necessarily the case that chemo is horrendous for everybody, and the recovery from this kind of surgery is not always a nightmare. Being prepared for everything is great, but dreading it, thinking that it's bound to be really bad, may be way premature, and may just add more stress to already stressful situation.
Good luck!
P.S. I am participating in a clinical trial in MSKCC for women in their first remission. I know MSKCC does not offer dose dense (weekly infusion of 18 weeks). If I were you, I would insist on getting this protocol. It produced AMAZING results in clinical studies, yet, most doctors are still not putting women on this protocol yet. I asked my MSKCC clinical trial doctor why they are not using dose dense, and his answer was non-committal. However, he did indeed acknowledge weekly taxol is probably a very good idea. (weekly taxol, carbo every three week is the dose dense protocol I was on). There is NO down side to this protocol: same drugs, only different delivery schedule. If weekly infusion is too harsh, the patient can always revert back to the standard once every three week schedule. Nothing to lose and potentially A LOT better outcome!0 -
Your Partner
I think the fact they got all the visible cancer is excellent & I've read this correlates with length of remission. I did everything your partner did plus had 3/4 of my colon removed, part of my stomach and part of my bladder and 1% was left. I did the HIPEC surgery. I needed a lot of help when I got home because I was weak and had IV's etc. My first chemo was bad but the chemos have gotten easier because my body, from the surgery, has gotten better. Keep hopeful...there's always people who survived this nasty disease.
melanie0 -
Your Recoveryevertheoptimist said:After surgery, I was
After surgery, I was diagnosed either UPSC 4B or OVCA 3C (ambiguous origin: my gyn onc and hospital pathologist had different opinions - moot point in a way, since the treatment and prognosis are same. Everything that could be taken out without impacting survival was taken out. My cancer was all over the place. The surgery report says, omentum turned into a solid sheet of cancer nodules, and cancer nodules studded all over the place, over the surface on intestines, around colon, on the pelvic walls, etc. A lime sized tumor wrapped around the colon could not be taken out, so was left behind. This was a pretty bad start, as you can imagine.
However, this story ends on a high note so far.....
I may be an exceptional case, but here is how it went for me.
* Right from the beginning, I did not need any pain medication.
* came home two days after this surgery
* I only needed help to get up from a chair or a bed due to the extensive abdominal incision. Actually, I could this do on my own even without help, but it was easier if somebody held my back so that I could ease the pressure on my abdominal area.
* 5 days after the surgery, I made myself a pot of soup, and cleaned the kitchen.
* 8 days after the surgery, I went to an integrative doctor to get an accupuncture. Then we went out for dinner and walked around the mall (it was winter so we went to the mall for exercise). Oh, we also went grocery shopping.
* Within two weeks, I started to walk about an hour and half (at a much slower pace than usual, I have to admit) at the mall. one month after the surgery, I was already walking total 4-5 miles a day everyday.
* 3 weeks after I started chemo: weekly infusion, straight 18 weeks, no break.
* had no chemo side effects other than hair falling out and blood count tanking. Did not take a single anti nausea pill they prescribed. No fatigue. No neuropathy. No mood swings. No chemo brain.
* exercised 1- 1.5 hours a day all throughout chemo (aerobics, though lower intensity than before).
* at the end of the 18th week, I was declared to be in remission: CA 125 was 15, no trace of tumor on CT/PET scan. This was unexpected. A good friend of mine who is a ob/gyn thought that given where I started, I would probably need additional treatment beyond the initial standard package of 6 cycles (18 weeks) of chemo.
********************************
I know I am probably in the exceptional case group. I am not saying all this to brag (who would want to brag about the most advanced stage cancer diagnosis and treatment!!!!!). I am sharing this so that people know that there is a very wide range of responses and reactions. It's not necessarily the case that chemo is horrendous for everybody, and the recovery from this kind of surgery is not always a nightmare. Being prepared for everything is great, but dreading it, thinking that it's bound to be really bad, may be way premature, and may just add more stress to already stressful situation.
Good luck!
P.S. I am participating in a clinical trial in MSKCC for women in their first remission. I know MSKCC does not offer dose dense (weekly infusion of 18 weeks). If I were you, I would insist on getting this protocol. It produced AMAZING results in clinical studies, yet, most doctors are still not putting women on this protocol yet. I asked my MSKCC clinical trial doctor why they are not using dose dense, and his answer was non-committal. However, he did indeed acknowledge weekly taxol is probably a very good idea. (weekly taxol, carbo every three week is the dose dense protocol I was on). There is NO down side to this protocol: same drugs, only different delivery schedule. If weekly infusion is too harsh, the patient can always revert back to the standard once every three week schedule. Nothing to lose and potentially A LOT better outcome!
I am so happy to hear about your results. Sounds like we had a similar situation i.e. alot of cancer! I can't say I've rebounded as well as you. I think I didn't come out of the surgery as well as you; nonetheless, you give me hope and I am so happy for you.
melanie0 -
finally got to read all the repliesMaxRudy said:Your Partner
I think the fact they got all the visible cancer is excellent & I've read this correlates with length of remission. I did everything your partner did plus had 3/4 of my colon removed, part of my stomach and part of my bladder and 1% was left. I did the HIPEC surgery. I needed a lot of help when I got home because I was weak and had IV's etc. My first chemo was bad but the chemos have gotten easier because my body, from the surgery, has gotten better. Keep hopeful...there's always people who survived this nasty disease.
melanie
It's been very enlightening reading everyone's replies. He update is this: They're waiting now for her to pass gas before releasing her from the hospital. But in the meantime every day she gets stronger and more able to do things: her walking is much better - she can do it without assistance; she can go to the bathroom without assistance and has even walked up a flight of stairs with the PT yesterday. I think one thing she has going for her is her size. She's small and in good shape. She's really ready to come home but if she doesn't pass gas they may take an xray to see what the story is.0 -
And the passing of gas isnyartist said:finally got to read all the replies
It's been very enlightening reading everyone's replies. He update is this: They're waiting now for her to pass gas before releasing her from the hospital. But in the meantime every day she gets stronger and more able to do things: her walking is much better - she can do it without assistance; she can go to the bathroom without assistance and has even walked up a flight of stairs with the PT yesterday. I think one thing she has going for her is her size. She's small and in good shape. She's really ready to come home but if she doesn't pass gas they may take an xray to see what the story is.
And the passing of gas is painful at least it was for me I was up and moving the same day of surgery and doing most everything by myself. The hard thing for me was the pain tell her to walk as much as possible that will get the gas moving.
Anne0 -
You can thank your liverevertheoptimist said:After surgery, I was
After surgery, I was diagnosed either UPSC 4B or OVCA 3C (ambiguous origin: my gyn onc and hospital pathologist had different opinions - moot point in a way, since the treatment and prognosis are same. Everything that could be taken out without impacting survival was taken out. My cancer was all over the place. The surgery report says, omentum turned into a solid sheet of cancer nodules, and cancer nodules studded all over the place, over the surface on intestines, around colon, on the pelvic walls, etc. A lime sized tumor wrapped around the colon could not be taken out, so was left behind. This was a pretty bad start, as you can imagine.
However, this story ends on a high note so far.....
I may be an exceptional case, but here is how it went for me.
* Right from the beginning, I did not need any pain medication.
* came home two days after this surgery
* I only needed help to get up from a chair or a bed due to the extensive abdominal incision. Actually, I could this do on my own even without help, but it was easier if somebody held my back so that I could ease the pressure on my abdominal area.
* 5 days after the surgery, I made myself a pot of soup, and cleaned the kitchen.
* 8 days after the surgery, I went to an integrative doctor to get an accupuncture. Then we went out for dinner and walked around the mall (it was winter so we went to the mall for exercise). Oh, we also went grocery shopping.
* Within two weeks, I started to walk about an hour and half (at a much slower pace than usual, I have to admit) at the mall. one month after the surgery, I was already walking total 4-5 miles a day everyday.
* 3 weeks after I started chemo: weekly infusion, straight 18 weeks, no break.
* had no chemo side effects other than hair falling out and blood count tanking. Did not take a single anti nausea pill they prescribed. No fatigue. No neuropathy. No mood swings. No chemo brain.
* exercised 1- 1.5 hours a day all throughout chemo (aerobics, though lower intensity than before).
* at the end of the 18th week, I was declared to be in remission: CA 125 was 15, no trace of tumor on CT/PET scan. This was unexpected. A good friend of mine who is a ob/gyn thought that given where I started, I would probably need additional treatment beyond the initial standard package of 6 cycles (18 weeks) of chemo.
********************************
I know I am probably in the exceptional case group. I am not saying all this to brag (who would want to brag about the most advanced stage cancer diagnosis and treatment!!!!!). I am sharing this so that people know that there is a very wide range of responses and reactions. It's not necessarily the case that chemo is horrendous for everybody, and the recovery from this kind of surgery is not always a nightmare. Being prepared for everything is great, but dreading it, thinking that it's bound to be really bad, may be way premature, and may just add more stress to already stressful situation.
Good luck!
P.S. I am participating in a clinical trial in MSKCC for women in their first remission. I know MSKCC does not offer dose dense (weekly infusion of 18 weeks). If I were you, I would insist on getting this protocol. It produced AMAZING results in clinical studies, yet, most doctors are still not putting women on this protocol yet. I asked my MSKCC clinical trial doctor why they are not using dose dense, and his answer was non-committal. However, he did indeed acknowledge weekly taxol is probably a very good idea. (weekly taxol, carbo every three week is the dose dense protocol I was on). There is NO down side to this protocol: same drugs, only different delivery schedule. If weekly infusion is too harsh, the patient can always revert back to the standard once every three week schedule. Nothing to lose and potentially A LOT better outcome!
Evertheoptimist
Your story is congruent with someone who has excellent liver function and no genetic defects in detoxification--you are one of the lucky ones. You inherited that liver function most likely from your mother. Go thank her if she is still alive.
The dose-dense taxol almost killed me. I wasn't so lucky with the liver...
Carolen0 -
Hi NYnyartist said:finally got to read all the replies
It's been very enlightening reading everyone's replies. He update is this: They're waiting now for her to pass gas before releasing her from the hospital. But in the meantime every day she gets stronger and more able to do things: her walking is much better - she can do it without assistance; she can go to the bathroom without assistance and has even walked up a flight of stairs with the PT yesterday. I think one thing she has going for her is her size. She's small and in good shape. She's really ready to come home but if she doesn't pass gas they may take an xray to see what the story is.
So glad to hear that she is getting stronger each day. The fact that she is in good shape will be a big help. I was also able to get around quite well and had little pain after my debulking, which was quite extensive. We'll be here to answer questions or concerns that you both might have........ welcome.
(((HUGS))) Maria0 -
your storyMwee said:Hi NY
So glad to hear that she is getting stronger each day. The fact that she is in good shape will be a big help. I was also able to get around quite well and had little pain after my debulking, which was quite extensive. We'll be here to answer questions or concerns that you both might have........ welcome.
(((HUGS))) Maria
hi Maria
I'm really curious about what your debulking procedure was like: what was found and where. With Nancy there was cancer found a bit on her diaphragm and bowel. So she had some bowel resection but didn't need a colostomy bag. We go for the pathology report with her surgeon next Wednesday and she's really scared about that - as I am. I guess we don't know for sure if anything spread beyond the areas where they found and removed the visible cancer.
How long ago was your operation? have you started chemo yet? and if so how are you responding to that. I may have mentioned that Nancy is a breast cancer survivor - 20 years ago for that one. She also had an acoustic neuroma a couple of years ago but that was benign. It seems to me that we get some hope and then some other piece of news comes up that crashes that hope. That's what the cycle has seemed like. I know she's feeling really bad so we're trying to set up some counseling as well.0 -
Hi NY and Nancynyartist said:your story
hi Maria
I'm really curious about what your debulking procedure was like: what was found and where. With Nancy there was cancer found a bit on her diaphragm and bowel. So she had some bowel resection but didn't need a colostomy bag. We go for the pathology report with her surgeon next Wednesday and she's really scared about that - as I am. I guess we don't know for sure if anything spread beyond the areas where they found and removed the visible cancer.
How long ago was your operation? have you started chemo yet? and if so how are you responding to that. I may have mentioned that Nancy is a breast cancer survivor - 20 years ago for that one. She also had an acoustic neuroma a couple of years ago but that was benign. It seems to me that we get some hope and then some other piece of news comes up that crashes that hope. That's what the cycle has seemed like. I know she's feeling really bad so we're trying to set up some counseling as well.
I was diagnosed in May 2006, stage 3C and also had a bowel resection with no colostmy bag. I then had 6 carbo/taxol chemo infusions over about a 5-6 month period. I remained in remission for 3 1/2 years before my CA-125 counts started to rise and I've been on chemo for the last 20 months. The infusions are keeping me stable and that's a good thing. Chemo is a pain in the butt, but I'm here and feel excellent when not under chemo after effects, which lasts about 1-2 weeks a month. I also had thyroid cancer over 20 years ago. Please, please don't get caught up on grim statistics that you find all over the internet. You said that Nancy is strong and otherwise healthy and that makes a huge difference. I celebrated my 5 year survival anniversary by taking part in a Teal There's a Cure walk/run with my whole family.
((((HUGS)))) Maria0 -
Thanks MariaMwee said:Hi NY and Nancy
I was diagnosed in May 2006, stage 3C and also had a bowel resection with no colostmy bag. I then had 6 carbo/taxol chemo infusions over about a 5-6 month period. I remained in remission for 3 1/2 years before my CA-125 counts started to rise and I've been on chemo for the last 20 months. The infusions are keeping me stable and that's a good thing. Chemo is a pain in the butt, but I'm here and feel excellent when not under chemo after effects, which lasts about 1-2 weeks a month. I also had thyroid cancer over 20 years ago. Please, please don't get caught up on grim statistics that you find all over the internet. You said that Nancy is strong and otherwise healthy and that makes a huge difference. I celebrated my 5 year survival anniversary by taking part in a Teal There's a Cure walk/run with my whole family.
((((HUGS)))) Maria
Just got back on the site to check messages today as the hurricane (not himicane) is bearing down on us. Nancy is getting stronger every day and more and more healing. She even poops now! But she's able to take pretty long walks with me and others, sleeps better, appetite is really coming around. We met with her surgeon, Dr Abu-Rustum at Sloan-Kettering and he was optimistic about recovery. He mentioned 2 years to know about remission and 5 years to know about cure. We know there is still so much uncertainty - and that's like living on a knife's edge. Chemo starts in a couple of weeks so we'll see how well she responds to that. Like you she's a stage 3C and had a bit of bowel resection also without need of a bag, a little cancer on the diaphragm, omentum and I believe on the liver. No issues with the lymph nodes or anything like that. I agree that it's easy to get caught up in the statistics.. I want her to stay away from that.0 -
Hi NY and Nancynyartist said:Thanks Maria
Just got back on the site to check messages today as the hurricane (not himicane) is bearing down on us. Nancy is getting stronger every day and more and more healing. She even poops now! But she's able to take pretty long walks with me and others, sleeps better, appetite is really coming around. We met with her surgeon, Dr Abu-Rustum at Sloan-Kettering and he was optimistic about recovery. He mentioned 2 years to know about remission and 5 years to know about cure. We know there is still so much uncertainty - and that's like living on a knife's edge. Chemo starts in a couple of weeks so we'll see how well she responds to that. Like you she's a stage 3C and had a bit of bowel resection also without need of a bag, a little cancer on the diaphragm, omentum and I believe on the liver. No issues with the lymph nodes or anything like that. I agree that it's easy to get caught up in the statistics.. I want her to stay away from that.
It's so nice to hear that Nancy is doing so well/ I thought she would do well as you said that she is otherwise healthy and pooping is a very good thing ( a major issue for many of us during chemo ). You are right that there is a lot of uncertainty. You both will become all too well informed about OVCA, but the real trick becomes to celebrate the great news like the surgery is over and Nancy came through it just fine. Next you'll count down the chemos. Stay safe with the hurricane.
(((HUGS))) Maria0
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