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Newly Diagnosed Granulosa
My 23 year old daughter recently had a cyst removed by her gynecologist from her right ovary. At the time the gynecologist said the cyst looked benign therefore Only the cyst was removed. We have since been told that it is Granulosa and she needs to see a cancer gynecologist. Her appointment is coming up in over a week with this cancer doctor.
My question is what to expect. The gynecologist said surgery/surgeries and possible chemo. I guess what my question is: will they remove her right ovary and do testing to see if it is anywhere else before doing a hysterectomy?
Any feedback is appreciated.
My question is what to expect. The gynecologist said surgery/surgeries and possible chemo. I guess what my question is: will they remove her right ovary and do testing to see if it is anywhere else before doing a hysterectomy?
Any feedback is appreciated.
Thank you for sharing... I had read something similar to this a month or so ago. There is hope for a *cure*, one day.
Try not to worry too much, easier said than done, I know. Someone gave me a wonderful piece of advice, that I attempt to adhere to: Do not focus on the what if's and what might happen.....only focus on what you know for sure - the concretes. The things that we are unsure of may never come to be, and then, you have wasted your *today's* worrying about them...
I am a Christian, and I know God has a plan, and He has walked right beside me every step of the way with this trial.
Another note....with Granulosa...my gyn/onc said, if you have to have cancer, this is a good one to have. It is *usually* slow growing, and may never come back. There is a lot of hope in knowing that.
I am so sorry you have to face this, but, like I said before, you are wise to try to educate yourself as much as possible. How is your daughter handling this...?
The Inhibins are blood tests that may alert your doctor to a recurrence - if there is a rise in the number. Inhibin B has shown in studies to be a more reliable marker, although not always... Many GCT patients will have CA125, Inhibin A & B monitored every three to four months
I am still praying for you and your daughter.
Try not to worry too much, easier said than done, I know. Someone gave me a wonderful piece of advice, that I attempt to adhere to: Do not focus on the what if's and what might happen.....only focus on what you know for sure - the concretes. The things that we are unsure of may never come to be, and then, you have wasted your *today's* worrying about them...
I am a Christian, and I know God has a plan, and He has walked right beside me every step of the way with this trial.
Another note....with Granulosa...my gyn/onc said, if you have to have cancer, this is a good one to have. It is *usually* slow growing, and may never come back. There is a lot of hope in knowing that.
I am so sorry you have to face this, but, like I said before, you are wise to try to educate yourself as much as possible. How is your daughter handling this...?
The Inhibins are blood tests that may alert your doctor to a recurrence - if there is a rise in the number. Inhibin B has shown in studies to be a more reliable marker, although not always... Many GCT patients will have CA125, Inhibin A & B monitored every three to four months
I am still praying for you and your daughter.
It is a heavy load..just the worrying and waiting. Im very lost when it comes to the letters and numbers such as Inhibin A&B. I really have no clue what they mean. We are in Canada the gyno never mentioned information like this.
I just came across this article on granulosa cell tumors
http://www.bccancer.bc.ca/ABCCA/NewsCentre/2009/granulosa.htm
I Just thought I would share.
http://www.bccancer.bc.ca/ABCCA/NewsCentre/2009/granulosa.htm
I Just thought I would share.
Granulosa is often sated to be benign, but it never is. It is cancer. My gyn said the same thing to me....and he also said to my family that it went well, and the *cyst* was benign.
When I consulted with the oncologist/gyn ...he shook his head in dismay that my gyn had told me it was benign...Granulosa is *never* benign, and she WILL need to be followed up for the rest of her life...this is imperative...because like I previously stated, it can recur much much later....If she is staged at 1A with no tumor rupture, that is excellent, however, there are those with a 1A who have recurred....cancer has a tendency to break all the rules...the good thing about this one, is that *usually* it is slow growing. Many doctors will tell you that most will never have a recurrence...the problem lies in not knowing which part of the most we are in ;-)..... I do know a 6 year survivor with no recurrence to date, and she was staged 2C....there is hope....she still has biannual CAT scans and bloodwork. Imperative. The doctor that asnwers questions on this site, the expert forum has mentioned a low recurrence in the patients she has seen.
I do not want to scare you....I feel for your momma's heart. You do need to be aware of the seriousness of this though, arm your self with questions for the oncologist. You are wise to be seeking info now....if you go to pubmed there are multiple medical articles written by doctors who have dealt with GCT. You can make yourself dizzy reading all of them, but you will get an idea for some things to talk about with your doctor.
My biggest symptom was lack of cycle as well. I will be continuing to pray, please come back and update after her appointment.
When I consulted with the oncologist/gyn ...he shook his head in dismay that my gyn had told me it was benign...Granulosa is *never* benign, and she WILL need to be followed up for the rest of her life...this is imperative...because like I previously stated, it can recur much much later....If she is staged at 1A with no tumor rupture, that is excellent, however, there are those with a 1A who have recurred....cancer has a tendency to break all the rules...the good thing about this one, is that *usually* it is slow growing. Many doctors will tell you that most will never have a recurrence...the problem lies in not knowing which part of the most we are in ;-)..... I do know a 6 year survivor with no recurrence to date, and she was staged 2C....there is hope....she still has biannual CAT scans and bloodwork. Imperative. The doctor that asnwers questions on this site, the expert forum has mentioned a low recurrence in the patients she has seen.
I do not want to scare you....I feel for your momma's heart. You do need to be aware of the seriousness of this though, arm your self with questions for the oncologist. You are wise to be seeking info now....if you go to pubmed there are multiple medical articles written by doctors who have dealt with GCT. You can make yourself dizzy reading all of them, but you will get an idea for some things to talk about with your doctor.
My biggest symptom was lack of cycle as well. I will be continuing to pray, please come back and update after her appointment.
I am sorry you have to go threw this it is very stressfull to have this constantly hanging over you and your daughters head. My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 .
GCT are types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. Granulosa cell tumors often produce estrogen/testosterone, and symptoms related to excessive hormone secretion of either are common. For women who are post menopause and have vag bleed it is due to excessive estrogen. When there is a lack of menses then it is probably due to excessive testosterone but with any cancer nothing is written in stone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS.
Please keep in mind if and only if you have a diagnoses of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing cancerous tumors as opposed to epitheal ovarian cancer. This cancer can possibly never return if removed intact, nodes are clear and pelvic washings were clear along with a low mitotic rate. Or unfortunately it can rear it's ugly head 5,10 and 15 years from now,this will be a life long vigilance.
My wife's Dr's in Sloan Kettering in NYC said she also has nothing to worry about because they removed the ovary fully intact. Removing the ovary fully intact is an indication for possibly no further tumors will develop.(cross our fingers)
Ask your surgeon if your tumor was removed intact. It is very important to find out if this was removed intact because if it was massarated/punctured than seeding of the pelvis is probable. Did the surgeon take any pelvic washings to see if there was any cancer cells in the pelvis.
They also said no further testing is needed. I have her Inhibin A&B done every 6 months. Also important is the mitotic level of the cancer cells being rated on a (1-10) scale, this is an index of how potentially virulent or agressive the cancer cells may be. Dr use that # as a guide to see if they want to do further treatment
.
Regards,
Kevin
GCT are types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. Granulosa cell tumors often produce estrogen/testosterone, and symptoms related to excessive hormone secretion of either are common. For women who are post menopause and have vag bleed it is due to excessive estrogen. When there is a lack of menses then it is probably due to excessive testosterone but with any cancer nothing is written in stone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS.
Please keep in mind if and only if you have a diagnoses of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing cancerous tumors as opposed to epitheal ovarian cancer. This cancer can possibly never return if removed intact, nodes are clear and pelvic washings were clear along with a low mitotic rate. Or unfortunately it can rear it's ugly head 5,10 and 15 years from now,this will be a life long vigilance.
My wife's Dr's in Sloan Kettering in NYC said she also has nothing to worry about because they removed the ovary fully intact. Removing the ovary fully intact is an indication for possibly no further tumors will develop.(cross our fingers)
Ask your surgeon if your tumor was removed intact. It is very important to find out if this was removed intact because if it was massarated/punctured than seeding of the pelvis is probable. Did the surgeon take any pelvic washings to see if there was any cancer cells in the pelvis.
They also said no further testing is needed. I have her Inhibin A&B done every 6 months. Also important is the mitotic level of the cancer cells being rated on a (1-10) scale, this is an index of how potentially virulent or agressive the cancer cells may be. Dr use that # as a guide to see if they want to do further treatment
.
Regards,
Kevin
Sorry to hear about your surgery, hope you doing well.
I only recall the gyn saying that the mass was removed (i believe she said in one piece) and it was about 2.5 cm. that surgery went really good....and that the mass looked benign.
The symptom that brought her to the dr. was absence of menses. She does suffer migraines but I'm not sure if that is a symptom.
Fertility sparing surgery would be something she would prefer if possible as she does not have children yet. I guess we just have to wait for her to see the Oncologist/Gynecologist. Waiting is hard.
Thankyou for your prayers.
I only recall the gyn saying that the mass was removed (i believe she said in one piece) and it was about 2.5 cm. that surgery went really good....and that the mass looked benign.
The symptom that brought her to the dr. was absence of menses. She does suffer migraines but I'm not sure if that is a symptom.
Fertility sparing surgery would be something she would prefer if possible as she does not have children yet. I guess we just have to wait for her to see the Oncologist/Gynecologist. Waiting is hard.
Thankyou for your prayers.
She will need another surgery, a cancer staging surgery to see if it has spread anywhere else. Did the gyn tell you if the cyst ruptured during the surgery? Granulosa is a rare form of ovarian cancer. It is usually slow growing, but not always. Granulosa can recur up to 10-20 years from diagnosis. Sometimes they do allow fertility sparing surgery, saving one ovary...however it will depend on if it ruptured and the extent of the cancer and the grade and mitotic rate (all things you will need to learn about to best prepare to fight this).
I was diagnosed in March of this year with Granulosa and had to have a complete hyst as well as all that goes along with cancer staging. It is a very extensive surgery. Did the gyn tell you the size of the cyst? She may or may not need chemo, depending on the doctor....chemo is oftentimes not effective for this type of tumor. Chemo is often used when one has a recurrence, or sometimes when there has been a rupture and the tumor has either a large size or high mitotic rate.
If you go to pubmed...there are many articles you can read there regarding this cancer. Please feel free to ask any questions you may have.
Praying for you and for your daughter as you walk this path.
I was diagnosed in March of this year with Granulosa and had to have a complete hyst as well as all that goes along with cancer staging. It is a very extensive surgery. Did the gyn tell you the size of the cyst? She may or may not need chemo, depending on the doctor....chemo is oftentimes not effective for this type of tumor. Chemo is often used when one has a recurrence, or sometimes when there has been a rupture and the tumor has either a large size or high mitotic rate.
If you go to pubmed...there are many articles you can read there regarding this cancer. Please feel free to ask any questions you may have.
Praying for you and for your daughter as you walk this path.
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