Just need answers and encouragement!
My twin sister and I are worried, consumed with fear and so many questions. Our brother had his physician friend request her records as a professional courtesy and it reads as "probable uterine cancer, stage 3 or 4". At this point we don't know what to think and cannot seem to get a straight answer out of a single person. Her chemo schedule has a diagnosis of ovarian cancer. Confused? you bet we are!
Can anyone offer any advice? any similar stories?
I appreciate the feedback!!
Comments
-
Sorry to hear of your
Sorry to hear of your mother's situation. The unknown can be scary. Hopefully she is under the care of a gyn-onc (this would be her surgeon and overall care manager). There are three main gyn cancers that present similarly: ovarian, primary peritoneal, and uterine papillary serous. All three are treated essentially the same, have the same cell histology. Main differnce is origin point. This can only be determined post surgery and with all pathology results. Even then, as in my case, exact orign can be difficult to determine. But since the cancers behave and are treated the same, at this time the exact origin is less important than she is getting her treatment underway. These days there are many treatment options, quite individualized to each patient's specific situation. It sounds like she has a good support system with you and your siblings.
This is an excellent resource location with many knowledable and supportive women who 'have been there.'
Hope this helps. Annie0 -
Her surgeon is also herupsofloating said:Sorry to hear of your
Sorry to hear of your mother's situation. The unknown can be scary. Hopefully she is under the care of a gyn-onc (this would be her surgeon and overall care manager). There are three main gyn cancers that present similarly: ovarian, primary peritoneal, and uterine papillary serous. All three are treated essentially the same, have the same cell histology. Main differnce is origin point. This can only be determined post surgery and with all pathology results. Even then, as in my case, exact orign can be difficult to determine. But since the cancers behave and are treated the same, at this time the exact origin is less important than she is getting her treatment underway. These days there are many treatment options, quite individualized to each patient's specific situation. It sounds like she has a good support system with you and your siblings.
This is an excellent resource location with many knowledable and supportive women who 'have been there.'
Hope this helps. Annie
Her surgeon is also her oncologist. He treated her for cervical cancer 19 years ago!!! I guess at this stage we just want her to have the best possible quality of life. We worry that she may not be a candidate for surgery and what that will mean as a whole for her situation.
Waiting has been extremely difficult and all five of us just try to hold things together for her.
Her first round of chemo was very hard on her and she had some really bad nausea/vomiting. The second dose went much easier and a week out she is feeling really good still. She is eating well and laughing with us. Her hair is just about gone, but she is making jokes about that and so all of us support her. My brothers shaved their heads as well =D
Not knowing is difficult and we do the best we can.
Thank you Annie, your words do help and I appreciate the reply!
Anita0 -
ANITA
So sorry that you Mom must go through this, and all of you as well. The word 'probable' in her report sounds too open-ended to me. Has she had a trans-vaginal ultrasound? How about any CA125 blood tests? While not conclusive, they are still used as diagnostic tools. Especially in the case of the CA125. How will they judge the affect of chemo if they don't have a baseline number? I can certainly understand not wanted to necessarily operate right away - this is a common approach depending on the situation. But again, not knowing what they are treatment makes we wonder how they know what to use? Of course, they are the doctors and apparently have a plan. How about a PET scan?
I truly understand your confusion. I would be either calling to have a one-on-one consultation with the doctor, and at least have a phone conversation, with your list of questions.
Please keep us posted. Till then, sending hugs and prayers to all of you.
Monika0 -
Monika-mopar said:ANITA
So sorry that you Mom must go through this, and all of you as well. The word 'probable' in her report sounds too open-ended to me. Has she had a trans-vaginal ultrasound? How about any CA125 blood tests? While not conclusive, they are still used as diagnostic tools. Especially in the case of the CA125. How will they judge the affect of chemo if they don't have a baseline number? I can certainly understand not wanted to necessarily operate right away - this is a common approach depending on the situation. But again, not knowing what they are treatment makes we wonder how they know what to use? Of course, they are the doctors and apparently have a plan. How about a PET scan?
I truly understand your confusion. I would be either calling to have a one-on-one consultation with the doctor, and at least have a phone conversation, with your list of questions.
Please keep us posted. Till then, sending hugs and prayers to all of you.
Monika
They have run every
Monika-
They have run every test known to man at this point. The trans-vag ultrasound was one of the first things they did. They have also done her CA125, so they are working with a baseline at this point.
Surgery was not done first because of the fluid build up. Her doc wants to see if the chemo will resolve that and then hopefully move onto the surgery and staging. Im sorry if I made this sound like they were flying totally blind. I guess it feels like we are the clueless ones.
We just were not sure when to expect the next CT to be scheduled-2nd chemo was a week ago. She has another CA125 due next week sometime. All of her labs, including CBC are due by 4/22.
Third round of chemo is scheduled for 4/27.
Thank you so much for the reply!!
Anita0 -
Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue0 -
Just to add some furthergroundeffect said:Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!0 -
Just to add some furthergroundeffect said:Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!0 -
Just to add some furthergroundeffect said:Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!0 -
Just to add some furthergroundeffect said:Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!0 -
Just to add some furthergroundeffect said:Your mom
I think this has become more of a practice when abdominal masses are found. I know of at least one woman in our area who was given chemo for quite a long time before having surgery. She responded to the chemo, and has had the surgery. I've heard this is being done because there hasn't been enough evidence that it doesn't work, and the hope is to knock the cancer back to try to keep it from spreading via the surgery. I guess if you checked to see if the specific drugs they're using for chemo are used for uterine cancer, also, you might have more of an idea of what they're trying to accomplish. I don't know much about uterine, but I did have it myself, and know that radiation is commonly used if needed.
Good luck, and I must hand kudos to your brother for the records request!
Sue
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!0 -
"over and done with" isn't usually how it works anyway.((Anita))Anita1216 said:Just to add some further
Just to add some further information-
The first CT scan showed no mets to her liver, pancreas or lungs. I know that is a fortunate thing. The fluid did have cancer cells in it and she has had that drained twice now. The surgeon felt that doing surgery in the beginning would cause her more harm because of the fluid and complications to her heart and lungs if he opened her up. We are hoping for a debulking surgery soonish, I know she wants to get it done and over with.
Thank you all for the thoughtful replies and encouragement!!!!
Surgery is so hard on the body; I'm sure your mother's oncologist wants to try and shrink the mass and dry up the fluids so that the surgery is less invasive and dangerous.
Diagnosis of gynecologic cancers is so difficult. I went 3 places and got 3 different diagnosis originally. For the 1st year I was treated for a diagnosis of a rare papillary serous uterine cancer. A year later when I had my 1st recurrence and a new biopsy done, my original pathology was re-examined and I was told that what I had was a grade 3 endometrial cancer with all papillary serous cells removed during my D&C way way back. Another year has passed and now that my CA125 is up to 1600, my oncologist is treating this as ovarian cancer because endometrial cancers rarely show CA125s in ranges that high. I must also add that there are a LOT more chemo drugs approved for ovarian cancer than for uterine cancer, so the vague dual diagnosis may be a way to keep all drug options open for insurance purposes.
BUT, (and here's the important part!), my treatment would have been almost exactly the same, regardless of the origin of my cancer originally. There are only so many chemo drugs for gynecologic cancers. The fact that your mother survived cervical cancer may be to her benefit if she had chemo before, as the same chemo drugs that worked for her back then will probably work for her again. So please don't stress about the cancer origin; they will know a lot more after your mother is able to have surgery and pathology can be done on larger tissue samples.
It's frustrating. We all want this to be an exacting science and get definitive answers. But each person's cancer is as individual and unique as a snowflake and so the medical team really DOES have to "make it up as we go along", always ready to switch gears and change their minds as problems and opportunities develop. I am so sorry you have this new stress in your life.0 -
Mom
Hi Anita,
My mom was diagnosed at 66 too. She also had three rounds of chemo prior to surgery and then four more after surgery. Mom's oncologist told her the standard of care here (Ontario, Canada) is the three surgery and then three more. It is to dry up any fluid so there is no spill over when they operate.
The only advice I can offer is make sure you are aware of the services offered to your mom that are available at no charge through your community and/or the hospital.
Also if your mom starts experiencing any problems with constipation get on top of it right away. That was the worse and the most painful for my mom, eating right didn't seem to make a difference. Make sure her fluid levels stay up and that she gets plenty of rest.
A lot of the women here also take some either for depression or anxiety or in my mom's case both. Keep an eye out for it, my mom's emotions and not being able to find peace are the biggest roadblocks for her right now.
Good luck to you and to your mom.
Kelly0 -
Dear Anita
Similar story....Mom diagnosed with OVCA....3 chemos and then surgery....3 more and then a break...On thing for sure though,is we had a very experienced Gyn/Onc/Surgeon do the surgery..the stats are overwhelming to have a seasoned gyn/onc/surgeon do the surgery as they know where to look....this is a very tricky disease and it can go into all kinds of little enclaves...so we opted to have a guy who only does surgery do the surgery and we have a gyn/onc who focues on the treatment and they work together.....i think its hard to be great at both...Good Luck and keep us posted..0 -
She had both chemo andLisa13Q said:Dear Anita
Similar story....Mom diagnosed with OVCA....3 chemos and then surgery....3 more and then a break...On thing for sure though,is we had a very experienced Gyn/Onc/Surgeon do the surgery..the stats are overwhelming to have a seasoned gyn/onc/surgeon do the surgery as they know where to look....this is a very tricky disease and it can go into all kinds of little enclaves...so we opted to have a guy who only does surgery do the surgery and we have a gyn/onc who focues on the treatment and they work together.....i think its hard to be great at both...Good Luck and keep us posted..
She had both chemo and radiation for her cervical cancer and also radium implants. That was a tough road and it seems like such a distant memory to me now. I was just 21 then and maybe in alot of ways-very ignorant. The information was not all that readily available then, not like going to Gogle and being scared to death of what you read.
I am trying to be objective, to look at the bigger picture. I know every case is unique and the final outcome cannot really be determined. Mom has a magnesium disorder that requires daily "horse pills" and she tends to dehydrate quickly. So its a constant battle and gentle encouragement to drink more water, to eat that bit of this or that.
Whats been really hard? Watching her lose her hair. The chemo she had 19 years ago did not have that side effect. Mom looks so different, so much more fragile balding. It is tough to see this strong woman that raised 5 children on her own look so weak and tired constantly.
Thank you for the replies and the encouragement. I know we will get through this, one day at a time is the best any of us can do.0 -
Waiting for surgeryAnita1216 said:She had both chemo and
She had both chemo and radiation for her cervical cancer and also radium implants. That was a tough road and it seems like such a distant memory to me now. I was just 21 then and maybe in alot of ways-very ignorant. The information was not all that readily available then, not like going to Gogle and being scared to death of what you read.
I am trying to be objective, to look at the bigger picture. I know every case is unique and the final outcome cannot really be determined. Mom has a magnesium disorder that requires daily "horse pills" and she tends to dehydrate quickly. So its a constant battle and gentle encouragement to drink more water, to eat that bit of this or that.
Whats been really hard? Watching her lose her hair. The chemo she had 19 years ago did not have that side effect. Mom looks so different, so much more fragile balding. It is tough to see this strong woman that raised 5 children on her own look so weak and tired constantly.
Thank you for the replies and the encouragement. I know we will get through this, one day at a time is the best any of us can do.
Anita
So sorry to hear what you, your mom and the family are going through. Even though it may be hard to wait for surgery, the surgery will go so much better once the chemo has had a chance to shrink the tumor and especially shrink the blood supply to the tumor.
Your mom will have much less blood loss during surgery and hopefully no need for bowel resection as the chemo does its job. If I could go back and do things differently, I would certainly opt for having some chemo FIRST as I lost a lot of blood during surgery and did have a bowel resection, too.
Magnesium is difficult to absorb and you might want to talk to the doctor about having your mom receive IV magnesium infusions. The chemo causes the loss of a lot of electrolytes including magnesium which could make your mom feel poorly.
Best wishes to all of you.0
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