Question - please help with your advise

Survivor73

Hello All. I am a 43 yr old thyroid and breast cancer survivor. Just finished rads for the breast and am waiting for surgery for a reoccurance of the thyroid ca. Original was 2 yrs ago.

When I was first diag with breast ca, they did a CT scan and found a large mass on my ovary. Then u/s showed it was two large cysts (one 4cm and one 5cm). My CA125 was normal. According to the gyno onc I saw, he stated due to the results he was not overly concerned and did not think it is cancer.

He referred me to a regular Gyno for follow up. Today I saw her. It's been 6 weeks since my last u/s, so she is sending me for one tomorrow to see if they are still there or not.

If they are, she is suggesting surgery to remove them...but I have to make a choice of the following:

1. just take the cysts
2. take the cysts and the right ovary (they are both on one side)
3. take both ovaries
4. Take everything. (aunt with endo ca)

I have many people in my family with cancer...2 sis with breast, 2 sis with thyroid, one sis with melanoma, 2 nephews with thyroid, aunts, uncles, cousins, etc...

I am currently waiting for results for genetic testing for BRCA1 & 2. (should get results in 2 months) which is too late (maybe) to wait for to make a decision.

I don't know what to do...I have had 2 surgeries already for the breast this year, will have another in July - a right disection which is a major surgury...and now a hysterectomy??

Please tell me your stories of how you dealt with the surgical menopause, etc. I know it's not like having cancer as well, but I'm sure you can add insight. Also, there's no way of them knowing for sure it's not cancer, but the signs are not there as of now.

I appreciate your help. I'm so overwhelmed these days, I can't make a decision. I don't know anyone who has had this type of surgery except for my MIL and she passed last year of Acute Leukemia and we never discussed it.

Anyway, any advise is welcome. Thank you all and I wish you all the best.

Tethys41

Ovarian cysts
I had a large ovarian cyst in 1999, which I had removed, along with that ovary. It was endometriosis. Ever since that time, I had to watch my remaining ovary very closely for many years, due to various-sized cysts developing. When working with that doctor, the rule of thumb was any cyst of 5 cm or larger was a potential for surgery.

I moved from that area in 2005, and started working with a nurse practitioner for my reproductive exams. In 2009, I had pain in my remaining ovary. The u/s showed a 5 cm cyst, but also a thickened endometrium. The nurse pratitioner focued on the endometrium, and not the cyst. After a d & c, a follow up ultrasound showed that they cyst had reduced to 2 cm. All seemed well, until 7 weeks later I was diagnosed with what turned out to be stage IIIc ovarian cancer.

I learned many things from that experience, one being that I should have followed the advice of my former doctor and had everything removed back in 1999. I was only 39 then, but didn't plan to have children. My doctor back then said I should get everything removed so as not to have to worry about cancer in the future. I had no history of cancer prior to my 2009 diagnosis. So, if you wanted to learn from my mistake, I'd recommend having a total hysterectomy.

With regard to surgical menopausal symptoms, I don't know your situation. You would need to know whether you are able to have hormone replacement therapy with the type of cancer you had. I have opted out of HRT, even though my tumors were not hormone sensitive, because I understand that even though they were not, my body can change and become susceptible to hormone sensitive cancers. Instead of hormones, I receive accupuncture and take specific Chinese herbs that curb the symptoms. The combination took a little tweaking at first, but I have very few menopausal symptoms now.

Probably the most important advice I can give you is, find a good, experienced gynecological oncologist to conduct your surgery. The surgery is a very specialized one, and not one that should be conducted by a general gynecologist. If this does turn out to be cancer, you want a specialist, who has done a lot of these surgeries, to do yours. The long-term outcomes of this disease rest heavily on the quality of the initial surgery.

Best of luck.

kellyh33

Cysts
The situtation with my mom was the same. She is 67 and was diagnosed with ovca one year ago. 25 years ago she had problems with cyst so she had almost everything removed except her left ovary so she wouldn't go into early menopause.
What a diaster! If they had taken everything Mom wouldn't be in the position she's in today. She is now on her third line treatment, surgery was unsuccessful due to the location of the tumor( it's wrapped around her blood supply), 22 rounds of chemo, feeling like crap all the time and not to mention Mom will not see 70.
So i guess my advice to you is have a complete hystercectomy and deal with early menopause so you aren't dealing with a premature death instead.
Kelly

carolenk

kellyh33 said:

Cysts
The situtation with my mom was the same. She is 67 and was diagnosed with ovca one year ago. 25 years ago she had problems with cyst so she had almost everything removed except her left ovary so she wouldn't go into early menopause.
What a diaster! If they had taken everything Mom wouldn't be in the position she's in today. She is now on her third line treatment, surgery was unsuccessful due to the location of the tumor( it's wrapped around her blood supply), 22 rounds of chemo, feeling like crap all the time and not to mention Mom will not see 70.
So i guess my advice to you is have a complete hystercectomy and deal with early menopause so you aren't dealing with a premature death instead.
Kelly

I vote for more surgery
I used to be one of those people who thought it was the total hysterectomy and bilateral salpingo-oopherectomy was done way too often and unnecessarily on women. Not any more.

Knowing what I know now AND seeing not only your history, but also your family history, I would strongly recommend that you get your girl parts out soon. Sure, you may only have cysts now--but those cysts can't be trusted to NOT go bad on you someday when you least expect it.

I would opt for the robotic Da Vinci procedure which is minimally invasive if you have that option. The gyn/oncologist is the best one to make that decision.

You will have some adjustment to go through after your ovaries are gone but it will be helpful for preventing the breast cancer recurrence. I had night sweats for a few months and I had acupuncture, too, which helped a lot.

If you have any idea what is involved with the standard debulking surgery for ovarian cancer which included a bowel resection or colostomy/ileostomy for some of us, you would understand why you are getting a recommendation for more surgery when you ask any of us on this discussion board. Breast cancer is really scary...ovarian cancer is really, REALLY scary.

Best wishes for your future,

Carolen

childofthestars

Hi Survivor73
My mum died of ovca 11 years ago this month - she was just 57, i was dx with ovca stage 11c in June last year......... Around the time of my mum's passing my gyny (same as my mum's) suggested that i have a complete hysterectomy because of my history - i had breast ca in 2000. I declined........................ BRCA testing wasn't available back then but i found out recently that i have BRCA1. I have a daugher who is 21 and if she is BRCA she will consider prophylactic hysterectomy and mastectomy (once she has had children).
Surgical menopause isn't pleasant BUT is far preferable to the alternative.
HAVE IT ALL REMOVED pleeeeeaseee.
Michelle x

Survivor73

childofthestars said:

Hi Survivor73
My mum died of ovca 11 years ago this month - she was just 57, i was dx with ovca stage 11c in June last year......... Around the time of my mum's passing my gyny (same as my mum's) suggested that i have a complete hysterectomy because of my history - i had breast ca in 2000. I declined........................ BRCA testing wasn't available back then but i found out recently that i have BRCA1. I have a daugher who is 21 and if she is BRCA she will consider prophylactic hysterectomy and mastectomy (once she has had children).
Surgical menopause isn't pleasant BUT is far preferable to the alternative.
HAVE IT ALL REMOVED pleeeeeaseee.
Michelle x

Thanks for the info
Hello All. thanks for the info...I am leaning toward having it all out, my breast ca was estrogen positive, so no way I can do hormone replacement. I am currently on tamoxifan, which causes the hot flashes, etc similar to menopause, and I have felt some, but they are not that bad or that often.

I guess I will see what happens next...of course I have no idea when I'll be physically ok to do the surgery, as I am already having one in July...

This is turning into the worst year of my life...I've spent more time sleeping then when I was a baby...lol. if I'm not sleeping, I'm planning when I can go back to bed...lol...my kids just think I'm nuts...and my hubby doesn't know what to do for me anymore.

Thanks again for your advise...I didn't know about the 5cm cyst rule - that's helpful to know.

Off to an U/S today to see what's happening...

Take care all.

Hissy_Fitz

Survivor73 said:

Thanks for the info
Hello All. thanks for the info...I am leaning toward having it all out, my breast ca was estrogen positive, so no way I can do hormone replacement. I am currently on tamoxifan, which causes the hot flashes, etc similar to menopause, and I have felt some, but they are not that bad or that often.

I guess I will see what happens next...of course I have no idea when I'll be physically ok to do the surgery, as I am already having one in July...

This is turning into the worst year of my life...I've spent more time sleeping then when I was a baby...lol. if I'm not sleeping, I'm planning when I can go back to bed...lol...my kids just think I'm nuts...and my hubby doesn't know what to do for me anymore.

Thanks again for your advise...I didn't know about the 5cm cyst rule - that's helpful to know.

Off to an U/S today to see what's happening...

Take care all.

I would have everything
I would have everything removed, too, but I have to remind everyone that you can still get ovarian cancer, even after your ovaries are removed. Same cancer, just a different name.

I had the genetic testing done for breast cancer (I was negative) and had already decided that if the results came back positive, I would have both breasts removed.

I had PCOS when I was much younger. I think there may be a connection between ovarian cysts and ovarian cancer, but who knows for sure?

Carlene

childofthestars

Hissy_Fitz said:

I would have everything
I would have everything removed, too, but I have to remind everyone that you can still get ovarian cancer, even after your ovaries are removed. Same cancer, just a different name.

I had the genetic testing done for breast cancer (I was negative) and had already decided that if the results came back positive, I would have both breasts removed.

I had PCOS when I was much younger. I think there may be a connection between ovarian cysts and ovarian cancer, but who knows for sure?

Carlene

ovarian cancer with no ovaries
Hi Carlene
I know about the fact that you can still get ovca with no ovaries, same goes for breast ca - a real bummer, but what to do........?????
PS: Have you heard anymore about Nancy, she is always on my mind?
Michelle x

Tethys41

childofthestars said:

ovarian cancer with no ovaries
Hi Carlene
I know about the fact that you can still get ovca with no ovaries, same goes for breast ca - a real bummer, but what to do........?????
PS: Have you heard anymore about Nancy, she is always on my mind?
Michelle x

Risks after surgery
Yes, there is the possibility of developing ovarian cancer even after removal of the ovaries, but I believe it is only about 3%, whereas, if you are BRCA1 positive, it is in the 40% range, without surgery.

poopergirl14052

I vote for surgery too
Especially with your family history. Good luck and I agree to what you choose. It is a difficult place to be in...val

Survivor73

poopergirl14052 said:

I vote for surgery too
Especially with your family history. Good luck and I agree to what you choose. It is a difficult place to be in...val

bad vibes
So, had the U/S today...she did confirm that one of the cysts that was there before is on the right side, but wouldn't tell me the size...then she found one on the left side. She took a long time getting pictures of it and had to put me into different posittions to get the right angle (intra-vag U/S). She wouldn't give me any info on this one and she went pretty quiet all of a sudden...she was telling me about the right side and was pretty open at the beginning....so now I will wait until Wednesday to get the results...I so hate waiting...

I just don't think I can handle anymore bad news...

Thanks all for letting me vent.

Tethys41

Survivor73 said:

bad vibes
So, had the U/S today...she did confirm that one of the cysts that was there before is on the right side, but wouldn't tell me the size...then she found one on the left side. She took a long time getting pictures of it and had to put me into different posittions to get the right angle (intra-vag U/S). She wouldn't give me any info on this one and she went pretty quiet all of a sudden...she was telling me about the right side and was pretty open at the beginning....so now I will wait until Wednesday to get the results...I so hate waiting...

I just don't think I can handle anymore bad news...

Thanks all for letting me vent.

The wait
So, are you saying you have to wait until next Wednesday for your results? That seems like a very long time to be in limbo. Can't you call the doctor's office and ask for the results over the phone? I don't know where you got the ultrasound, but I learned that if I couldn't get my results from a diagnositc exam from my doctor in a timely manner, I could go to the hospital, where the test was done, and get a copy of the radiologist's report, usually the day after the test. If you opted to do that, you would need to be prepared for bad news, if there is any.

LaundryQueen

Tethys41 said:

The wait
So, are you saying you have to wait until next Wednesday for your results? That seems like a very long time to be in limbo. Can't you call the doctor's office and ask for the results over the phone? I don't know where you got the ultrasound, but I learned that if I couldn't get my results from a diagnositc exam from my doctor in a timely manner, I could go to the hospital, where the test was done, and get a copy of the radiologist's report, usually the day after the test. If you opted to do that, you would need to be prepared for bad news, if there is any.

Oops!


LQ

Radioactive34

Survivor73 said:

bad vibes
So, had the U/S today...she did confirm that one of the cysts that was there before is on the right side, but wouldn't tell me the size...then she found one on the left side. She took a long time getting pictures of it and had to put me into different posittions to get the right angle (intra-vag U/S). She wouldn't give me any info on this one and she went pretty quiet all of a sudden...she was telling me about the right side and was pretty open at the beginning....so now I will wait until Wednesday to get the results...I so hate waiting...

I just don't think I can handle anymore bad news...

Thanks all for letting me vent.

Clues
Waiting for news can be hard on the nerves. The day after my urgent care visit, my radiology report was available via an online patient portal. I logged on and read the report. I ended up cross referencing more than half of what I read. It gave me a good idea of the "bad news" coming. It really helped with the wait.

The worry and negativity that comes with this stayed. But and it was a big BUT I had a better clue what to expect.

Though...playing the fence...the oncologist gyn while admitting the markers were all there for cancer, refused to call it such until it was officially biopsied. She said there was no point to worry now...later we would see.

R34

LaundryQueen

Tethys41 said:

The wait
So, are you saying you have to wait until next Wednesday for your results? That seems like a very long time to be in limbo. Can't you call the doctor's office and ask for the results over the phone? I don't know where you got the ultrasound, but I learned that if I couldn't get my results from a diagnositc exam from my doctor in a timely manner, I could go to the hospital, where the test was done, and get a copy of the radiologist's report, usually the day after the test. If you opted to do that, you would need to be prepared for bad news, if there is any.

Yes, you can get your own
Yes, you can get your own report but you may not understand much of it. If your report says you have a lot of fluid or ascites, you have good reason to be worried. I agree that a person can still get peritoneal cancer even if the ovaries are gone.

Get the Anticancer book by David Servan-Schreiber--you need it one way or the other.

LQ

childofthestars

Survivor73 said:

bad vibes
So, had the U/S today...she did confirm that one of the cysts that was there before is on the right side, but wouldn't tell me the size...then she found one on the left side. She took a long time getting pictures of it and had to put me into different posittions to get the right angle (intra-vag U/S). She wouldn't give me any info on this one and she went pretty quiet all of a sudden...she was telling me about the right side and was pretty open at the beginning....so now I will wait until Wednesday to get the results...I so hate waiting...

I just don't think I can handle anymore bad news...

Thanks all for letting me vent.

It makes me really ANGRY the
It makes me really ANGRY the way some of us our treated with having to WAIT WAIT WAIT for answers about our OWN dis-eases!!! I saw a film a really long time ago (probably about 25 years) about an oncologist who was very distanced from his patients and their feelings until he was diagnosed with cancer and then saw everything from the other side of the fence - it was a fab film I just can't remember what it was called or who was in it (chemo brain!!) Anyway my point is that although I understand that doctors have to take a step back they should also be far more amenable to our feelings as human beings NOT just cancer patients!
That's my rant for the day.
Survivor73 hang in there.
Michelle x

LaundryQueen

childofthestars said:

It makes me really ANGRY the
It makes me really ANGRY the way some of us our treated with having to WAIT WAIT WAIT for answers about our OWN dis-eases!!! I saw a film a really long time ago (probably about 25 years) about an oncologist who was very distanced from his patients and their feelings until he was diagnosed with cancer and then saw everything from the other side of the fence - it was a fab film I just can't remember what it was called or who was in it (chemo brain!!) Anyway my point is that although I understand that doctors have to take a step back they should also be far more amenable to our feelings as human beings NOT just cancer patients!
That's my rant for the day.
Survivor73 hang in there.
Michelle x

I remember the film, too
I remember the film, too, but I can't remember the name of it, either! Hahahahaha! I do remember that William Hurt was the doctor who got cancer...OK, I did a google search, it was called "The Doctor" (1991) and I think it should have been called "Dr. Patient."

Wouldn't we be blessed if EVERY oncologist was also a cancer survivor? Or maybe they would just quit their jobs and find some less stressful form of employment after they walked the cancer road. Hmmmmm.

LQ

childofthestars

LaundryQueen said:

I remember the film, too
I remember the film, too, but I can't remember the name of it, either! Hahahahaha! I do remember that William Hurt was the doctor who got cancer...OK, I did a google search, it was called "The Doctor" (1991) and I think it should have been called "Dr. Patient."

Wouldn't we be blessed if EVERY oncologist was also a cancer survivor? Or maybe they would just quit their jobs and find some less stressful form of employment after they walked the cancer road. Hmmmmm.

LQ

Thanks for doing the
Thanks for doing the research LQ.
I think oncologists would definately seek alternative 'employment' after walking the cancer route. Still I suppose u gotta hand it to them in some ways they have a hell of a job!
Michelle x