My Mom has been battline Stage III Ovarian cancer for nine years. She went in for a hysterectomy due to a benign tumor and they discovered the other ovary was stage III ovarian cancer and she had immediate debulking surgery and part of her colon removed and resected. She has had reoccurances over the years, as well as one more debulking surgery in Jan of 2007. The Doctor was so positive and confident that he got everything he could see with the human eye and he recommended six months of radiation but in May of 2008 the cancer came back. She spent three months sick in bed from Gemzar in in late August we found out the tumors grew. She then went on Taxol alone (she had an allergic reaction in past years to Carbo and Doxil) and half of the tumors grew slightly and some stayed the same. She then underwent three months on Navilbine and this week we were thrilled to find out the tumors remained the same, but then let down to find out she has a partial obstruction of her small intestines. They're moving conservatively due to her past history and they're trying to determine if it is in fact a tumor or scar tissue. For the past eight months her quality of life has declined greatly. It's nothing like she's had in past years. My sister and I keep asking is this the beginning of the end. Is there a way to know or can we still be hopeful. We know her oncologist has told us the tumors will not go away but they're trying to maintain them, yet doctors are also amazed that she is still here 9 years later. I guess I'm looking for clarity regarding when to know it's the end?
My heart goes out to your Mom and your family, it's been a very tough time for all of you. My suggestion would be for you, your sister, and perhaps your Mom if you feel she would be able to handle it, to make an appointment with her oncologist and speak frankly with him. Then you and your sister would know if it's time for Hospice, or if he thinks another chemo is warranted. Best wishes, and G-d bless all of you.......Jane
This disease s...s, no doubt about that. No one can tell us when our time is up, we do not have expiration dates written on our foreheads.
Jane is right, speak with the oncologist, see what they have to say...and don't be afraid to get a second opinion. Your mother will know when she is ready to stop fighting...take the hints from her, she will know when she has had enough and cannot go any further.
You and your entire family will remain in my thoughts,
I agree with Jane, having an open discussion with the oncologist would be a good idea now. My Dad's oncologist was honest about what was happening, offered some treatment options but made sure we understood anything done at his stage would have been for possible pain relief only (radiation on the spine for the cancer there). We all knew there was no cure at his stage. It made it easier to make decisions about pain management and comfort and hospice care. His doctor never put a time on him though. No one can predict a thing like that.
Keep your Mom involved with the decisions. She needs to have some sense of control of her life. We let my Dad do as much as he could right up to the end.
Thank you all so much for your comments. On Friday my Mom underwent surgery for the bowel obstruction and it was not scar tissues it was disease. I wasn't surprised, however, I did think the doctor would be able to take it out and resection her small bowel. That's what he had hoped too but unfortunately the cancer is lining her pelvic area and there were multiple blockages. She ended up with an iliostomy bag. To my surprise she wasn't as devastated as I thought when she woke up. I guess she knew she was lucky she didn't have this sooner. To me it's just another step in the wrong direction but she remains positive and so I must try to as well. We'll talk to her oncologist next week to see what she thinks. There are still a couple of drugs they haven't tried so I'm hoping some treatment will keep it from growing to aggressively. She actually may have a little more quality of life with the bag b/c she was in the bathroom 8-15 times a day! My sister and I and my two brothers are planning to take her away in April for some fun with the grandchildren. You have to embrace every moment. Where is a damn cure! She still too young at 63.
Thanks for the update. I'm glad she has some relief for now. The trip in April is exciting, something to look forward to. We found that sitting together asking odd questions was good too. You can reminisce about the good old days but ask about now, her thoughts and feelings. Sometimes our loved ones won't share with us for fear of upsetting us. It's nice that they love us so much but they do have tons of thoughts rambling around in there when they're alone. My Dad seemed to be open at times to just talk about how he felt inside. Just a thought.
I want to thank you for letting us know what is going on in your mom's world. It is good she had surgery and that it swwms to be giivng her a better quality of life. Also, it is good it has given you and your sister and brothers a little peace of mind.
I would like to address the subject Irene injected here.
My dad died in 1980....he was 52 and had just been promoted to Major General in the Army. I had never seen him vulnerabel before.....he had always been tough and strict and he scared the hell out of me. Still to this day I regret not sitting and talking....listening.....to what was banging around in his head. I know very well he wanted to talk but I was too imature to mustur the courage to listen....I was young and stupid and I would give anything to be able to travel in time back to that blown opportunity to know my father better. Please don't make the same mistake.
Hi, I'm sorry they were not able to resect the bowel, but it is wonderful that you Mom is staying positive. I sincerely hope you get uplifting and positive feedback from the doctor and that they are able to do some treatment to eliminate or at least minimize the spread in the pelvic area. I understand how hard it is to stay upbeat, but you sound like you are a great support to your Mom. If you dont mind sharing, what were you Mom's symptoms and frequency of symptoms leading up to this? My Mom is 62 and was diagnosed in Oct 07. I am concerned that she is getting increased disease in her pelvic area. She has a CT review with her Dr. this week. She has some symptoms that are similar to a blockage and I am trying to remain positive, but am also finding it difficult. Thanks and keep us updated on the Drs feedback.
Thanks for your thoughts. Unfortunately it is so hard to know with my Mom when something might be the cancer spreading or just her regular symptoms b/c she has had so much of her colon removed and so much scar tissue from prior surgeries. With that said her symptoms were frequent diarrhea and pains in the stomach. We attributed it to the chemo she was on even though Navilbine causes constipation and not diarrhea because she has had so much of her colon removed in prior surgeries. So frequent diarrhea was part of her life. What really happened that said to her something is wrong is as the blockage worsened (the doctor said he thinks it was progressive) the symptoms got worse. No appetite and a lot of diarrhea and she was having trouble holding it in at night. Finally the severe stomach pain that sent her to the hospital and the cat scan that ironically showed no growth to the tumors they have been measuring since May 08 but a spot in the pelvic area. Apparently it is to deep in the pelvis to measure.
We saw her oncologist the other day and she said Mom needs to focus on getting better from major surgery right now and get out of the hospital without any complications such as pneumonia or blood clots. She said what happened last week could have been fatal. My Dad followed her out and asked her what she thought of the last chemo that seemed to keep the tumors from growing and she said she had to think about it but Mom wouldn't have any treatment for a month. He also asked her if she thought the amount of cancer was "significant" and she simply said "it's ovarian cancer." Finally, he asked her where we are on this journey and she said "go home and do what you have to do." "If you can travel do that." She will not give us a time frame. My sister (a nurse) thought we were going to get the three to six month speech but the fact is they don't know. This oncologist loves my Mom and has told her many times that she thought she only had two or three years to live when she first came to her in Dec. of 1999. So God is the only one who knows and while it's difficult to deal with, I'm trying to not mourn her death before she is gone. I feel angry again like when she was first diagnosed at only 54 years old. Why couldn't this have been found sooner, why does she have to have it, etc. I'm also thinking with everything is this the last time she'll be here or there. But as she's getting better from surgery I feel a little better. Yesterday was a tough day as her bowels are working again and the gas pains you get from abdominal surgery have started. And now she has to learn how to work the bag and everything. It's a lot but if anyone can do it, I know she can. We're hoping we can take a family trip in April and then my sister and I want to take her away for a weekend. Hopefully the two or three chemo drugs left to try will keep it at bay for a year or more, who knows. They always say cherish every day right? It's a little surreal like we're talking about someone else in church or town who is going through this not us with our Mom. That's the toughest thing -- going on living with cancer and not cashing it in.
Best of luck to your Mom. I hope her cat scan is clear and she doesn't have a reoccurance. Stay strong!
Thanks to Irene and Dian for your comments. I will try to take this time to allow her to talk, vent, cry....Prior to this latest set back she really has been the sickest she ever has been on the chemo. I think just b/c her body has been through so much. One day we did find ourselves alone and she opened up a little. She said she was scared and not ready to leave us. It's hard to hear that from your mother but I'm glad she was able to get it off her chest. My Dad prays everyday that she will find some kind of peace of mind but I don't know if that ever happens when someone is young and just not ready to go. We can only hope to have some more good times and try not to dwell on the short time we have. Many thoughts and prayers to you all.
You'll find even the simple things now become more treasured as she becomes more frail. During the last couple weeks with my Dad, just watching a silly sitcom together and seeing him smile warmed my heart. I never watched 2 and a Half Men before that. He loved that goofy show so that was a daily treat for us all.
Sometimes your Mom might want to talk about her feelings; other days she won't. Just let it flow. I don't know if your Mom is that close to the end but if/when her time is short, there is a wonderful book out there about changes during the last weeks. Sorry, I can't think of the title right now but it helped us a lot. There's a time when they seem to rally and get stronger and more alert. There's a time when they keep fiddling or picking at their clothes or sheets. Things like that and they're all stages. And one stage is reaching an acceptance or peace, being ready to let go. Anyway, it doesn't sound like your Mom is that close yet. For now, enjoy each other, laugh, talk and hug a lot. Touching is so important.
The book ireneo is talking about is called "Final Gifts" and it really is a good book that tells about behaviors that may be misunderstood by family at the end of life. I read it about 6 years ago when a friend of mine (age 30) was diagnosed with pancreatic cancer. My mom was diagnosed with OC at at 70 almost 5 years ago. She has a spot on her liver that isn't doing anything - it's been there for about 8 months; she has a tumor on the abdominal wall which is pressing on her kidney that they can't operate on. That's what is causing the problems. She decided to stop chemo completely about 3 weeks ago because it was doing more harm than good. She met with hospice and thought they were wonderful people - she was still up and running errands and working and came to my son's Honor Society Induction a week ago. Then she started having diarrhea and it hasn't stopped - hospice nurse has been there 2x. She doesn't have any pain, just some vomiting and diarrhea. We have an appointment with her oncologist on Wednesday. I don't know what to do for her - my only sister lives across the US, so it's my dad (who has been fantastic throughout this whole thing) and myself.
I wish you and your mom well, as well as others in this community.
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