Aa
OVCA Recurrance Complications
Good Morning,
My mother is 60 years old, diagnosed in April 2002 with stage IIIC Ovarian Cancer - which a complete hysterectomy and 6 months of Taxol/Carboplatin cured. In 2005, she was also diagnosed with Chronic Lymphocytic Leukemia (stage 0 - no treatment was needed apparently).
A retroperitoneal mass (originally measuring 8cmx5cm) was discovered in June 2009 - and it was confirmed as a recurrance of her Ovarian Cancer, including lymph node involvement. She started on the Taxol/Carboplatin again in July, but was switched to Gemzar in October after the Taxol/Carboplatin proved ineffective. After 8 months of treatment, though the tumor has now shrunk to 4cm x 3cm, her lymph nodes (right axial and left inuinial - not sure of the spelling) continue to go up and down,she is also now suffering from severe lymphedema (gained 15 pounds of fluid weight in her legs in 3 weeks). Her most recent PET Scan showed sclerotic lesions on three vertebrae (T8, T9, S1). Her Oncologist has been with her since the beginning, but is part of a very busy practice, and seems to show little concern for the lesions and is vague about the lymphedema and whether it is connected to the CLL, or is a result of the Chemo. Here are my questions:
Should I push for a more thorough look (or another scan) at the sclerotic lesions?
Is the lymphedema permanent (she was told that she will need to wear compression socks and get drainage massage for the rest of her life)? Is it likely that the lymphedema is a result of the chemo or could there be other factors?
Are there other chemo options that are more effective at treating the cancer with less of a taxing effect on her lymphatic system?
My mom's original stage at diagnosis was IIIC - yet she is considered to be at Stage IV now - is it common for recurrance to be considered stage IV?
Any answers or guidance is greatly appreciated :)
Joanna in NH
My mother is 60 years old, diagnosed in April 2002 with stage IIIC Ovarian Cancer - which a complete hysterectomy and 6 months of Taxol/Carboplatin cured. In 2005, she was also diagnosed with Chronic Lymphocytic Leukemia (stage 0 - no treatment was needed apparently).
A retroperitoneal mass (originally measuring 8cmx5cm) was discovered in June 2009 - and it was confirmed as a recurrance of her Ovarian Cancer, including lymph node involvement. She started on the Taxol/Carboplatin again in July, but was switched to Gemzar in October after the Taxol/Carboplatin proved ineffective. After 8 months of treatment, though the tumor has now shrunk to 4cm x 3cm, her lymph nodes (right axial and left inuinial - not sure of the spelling) continue to go up and down,she is also now suffering from severe lymphedema (gained 15 pounds of fluid weight in her legs in 3 weeks). Her most recent PET Scan showed sclerotic lesions on three vertebrae (T8, T9, S1). Her Oncologist has been with her since the beginning, but is part of a very busy practice, and seems to show little concern for the lesions and is vague about the lymphedema and whether it is connected to the CLL, or is a result of the Chemo. Here are my questions:
Should I push for a more thorough look (or another scan) at the sclerotic lesions?
Is the lymphedema permanent (she was told that she will need to wear compression socks and get drainage massage for the rest of her life)? Is it likely that the lymphedema is a result of the chemo or could there be other factors?
Are there other chemo options that are more effective at treating the cancer with less of a taxing effect on her lymphatic system?
My mom's original stage at diagnosis was IIIC - yet she is considered to be at Stage IV now - is it common for recurrance to be considered stage IV?
Any answers or guidance is greatly appreciated :)
Joanna in NH
A related discussion, OVCA update - mets found on CT Scan was started.
MEDICAL PROFESSIONAL
Dear Joanna,
that is very serious indeed to have compression of her inferior vena cava. That probably explains the intractable lymphema.
I would defer to the radiation oncologist about combining chemo with radiation.We definitely do it for cervical cancer (but usually use drugs like cisplatin with or without 5 fluoro-uracil)
but topotecan will really drop her counts. personally I would do radiation first. Radiation works quickly
please keep us posted
best wishes
that is very serious indeed to have compression of her inferior vena cava. That probably explains the intractable lymphema.
I would defer to the radiation oncologist about combining chemo with radiation.We definitely do it for cervical cancer (but usually use drugs like cisplatin with or without 5 fluoro-uracil)
but topotecan will really drop her counts. personally I would do radiation first. Radiation works quickly
please keep us posted
best wishes
Thank you very much Dr. Goodman for taking the time to respond to my inquiry.
My mom has been getting lymphatic drainage massage, and she has been wrapping her legs, but the lymphedema is not resolving -at all.
Unfortunately, the most recent PET scan my mom had this week showed that her retroperitoneal tumor is no longer responding to the Gemzar and is now increasing in size. It is considered inoperable, as it is deeply embedded and is occluding her inferior vena cava to some degree. She is scheduled to have a consult with a radiation specialist next week about whether she is a candidate for radiation. Her oncologist has also suggested she start topotecan. Can she have chemo and radiation at the same time?
Again, thank you very much.
Joanna
My mom has been getting lymphatic drainage massage, and she has been wrapping her legs, but the lymphedema is not resolving -at all.
Unfortunately, the most recent PET scan my mom had this week showed that her retroperitoneal tumor is no longer responding to the Gemzar and is now increasing in size. It is considered inoperable, as it is deeply embedded and is occluding her inferior vena cava to some degree. She is scheduled to have a consult with a radiation specialist next week about whether she is a candidate for radiation. Her oncologist has also suggested she start topotecan. Can she have chemo and radiation at the same time?
Again, thank you very much.
Joanna
MEDICAL PROFESSIONAL
Dear Joanna,
thank you for your questions.
It sounds like your mother has been getting very good care.
I assume she had a biopsy of the retroperitoneal mass that documented that this is ovarian cancer and not a new type of cancer?
It is surprising that it is not shrinking with carbo and taxol. A 7 year disease free interval for ovarian cancer is very good.Usually those cancers are very sensitive to chemotherapy
It could be that part of what is being measured on scan is the CLL.
as far as the lymphedema, I assume it is caused by compression of the lymphatics by enlarged lymph nodes.
has she been evaluated for blood clots in the legs?
if the lymphedema is due to compression from lymph nodes, it may not resolve. The best treatment is leg elevation, massage, wrapping of the legs. You should ask her doctor for a referral to a lymphedema specialist who can help advise int his matter
as far as staging going - no
you never change the stage once a stage is given. That is just so statistics can be kept on behavior of different stages (if you kept changing the stage every time a recurrence happens, how could you give statistics on the incidence of recurrence or death for say stage I?)
the appropriate terminology would be:
stage IIIC with recurrence
doctors can be busy. the best approach to get answers is to set up an appointment for a face to face consultation. bring your questions and a friend to help hear the answers
best wishes
thank you for your questions.
It sounds like your mother has been getting very good care.
I assume she had a biopsy of the retroperitoneal mass that documented that this is ovarian cancer and not a new type of cancer?
It is surprising that it is not shrinking with carbo and taxol. A 7 year disease free interval for ovarian cancer is very good.Usually those cancers are very sensitive to chemotherapy
It could be that part of what is being measured on scan is the CLL.
as far as the lymphedema, I assume it is caused by compression of the lymphatics by enlarged lymph nodes.
has she been evaluated for blood clots in the legs?
if the lymphedema is due to compression from lymph nodes, it may not resolve. The best treatment is leg elevation, massage, wrapping of the legs. You should ask her doctor for a referral to a lymphedema specialist who can help advise int his matter
as far as staging going - no
you never change the stage once a stage is given. That is just so statistics can be kept on behavior of different stages (if you kept changing the stage every time a recurrence happens, how could you give statistics on the incidence of recurrence or death for say stage I?)
the appropriate terminology would be:
stage IIIC with recurrence
doctors can be busy. the best approach to get answers is to set up an appointment for a face to face consultation. bring your questions and a friend to help hear the answers
best wishes
You are reading content posted in the Ovarian Cancer Forum
Learn how to spot the warning signs of this “silent killer.”
Diet and digestion have more to do with cancer prevention than you may realize
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
