would love to hear from anyone who has had a hysterectomy

fighting4five

In 3 weeks I will receive my last f/a/c.I am very excited for this part of treatment to be almost over. I will start Tamoxifen 3 weeks after last chemo and resume the herceptin. I have been contemplating whether or not to have a hysterectomy.My spouse does not want me to have to go through another surgery and recovery if not necessary,but I feel it would give me a little more piece of mind. I want to know all of the pros and cons. How did you feel physically and emotionally afterwards.knowing what you know now would you do it again?

I had bilateral mastectomy with reconstruction. ER+ PR+ HER2+
11 OUT OF 12 TAXOL (DID NOT HAVE 12TH DUE TO NUROPATHY)
3 OUT OF 4 5FU/A/C

Any feedback is greatly appreciated.

thoughts and prayers to everyone of you
Mary

mamolady

ovary out
Mary,
I had the ovary out mostly so I wouldn't have to go on tamoxifen. I preferred to go on arimidex because of the side effects of tamoxifen. Also being ER and PR +, it helps to eliminate the estrogen. The ovary was very simple surgery, the hot flashes I would have either way. The full hysterectomy is still pretty quick to recover from I believe but wait to hear what others say.
Cindy

RE

Hello Mary
My Mom had bc twice, then stomach cancer and last she had ovarian cancer and did not survive it. I had my hysterectomy after recovering from my second bc battle. I would do it again in a heart beat! It hurt for sure, no denying that.... it took about 2 weeks to be as mobile and give me back some of my independence. Emotions did run high for the first month or two but nothing really over the top. Physically once I was all healed up I was pretty much my normal self. I wish you well in whatever you choose to do!

Hugs,

RE

Double Whammy

RE said:

Hello Mary
My Mom had bc twice, then stomach cancer and last she had ovarian cancer and did not survive it. I had my hysterectomy after recovering from my second bc battle. I would do it again in a heart beat! It hurt for sure, no denying that.... it took about 2 weeks to be as mobile and give me back some of my independence. Emotions did run high for the first month or two but nothing really over the top. Physically once I was all healed up I was pretty much my normal self. I wish you well in whatever you choose to do!

Hugs,

RE

Age plays a part
in how well you do after a hysterectomy as well as whether your ovaries are removed or not. I assume they would be. Also whether they leave the cervix in place. It looks like you would not be able to have hormone replacement therapy since your breast cancer is ER+. You need to have conversations with your oncologist and gynecologist and do your research (I guess you are) before making a decision. Is one of these docs suggesting it? Why? Please listen to him/her if so.

My hysterectomy experience: I had a hysterectomy 6 weeks after my lumpectomy because I also had endometrial cancer. I didn't have to make a decision. It all had to come out. It was done using the DaVinci robot and my recovery was an absolute breeze. Major surgery through small incisions. I could be a poster child. I was 63 years old and so the hormone things (or lack thereof) had already happened and I noticed absolutely no difference hormonally. I did have a very brief period of time when I was very sad about a perceived loss of feminity. Probably had more to do with having breast cancer and endometrial cancer than having a hysterectomy. But it happened and it surprised me. Even at my age!

Best of luck to you. You should get a lot of feedback here. A lot of us have had hysterectomies for various reasons. Ask any questions you'd like.

Suzanne

Heatherbelle

my experience - would do it again in a heartbeat.
Hi Mary
I'm almost 18 months post BC diagnosis. I also had bilateral mastectomies. A/C/T chemo. I'm one of those "almost" triple negative, being Her2 and ER- but barely (1-4%) PR +. But, I found out that I am BRCA1+, so my oncologist recommended a hysterectomy. I had the surgery in August, everything removed. I had the DaVinci robotic assisted surgery, and I would do it again in a heartbeat. My grandmother died of ovarian cancer when she was 52, my mom had breast cancer last year as well as "female problems" my entire childhood, so I have that icky stuff going on in my family too.
I had a 1 night hospital stay, NO cramping, the night after my surgery I was sore in the abdominal area, but other than that I was amazed at how great I felt. I was still restricted in what I could do, limited to not lifting or carrying anything over 5-10 lbs for a few weeks. I have 5 small incisions on my belly that are healed over now, tiny little scars.
I had no hormone replacement therapy, and the hormonal issue is NOT as bad as I had figured it would be. I was a little weepy for the first few weeks after, but not the basketcase I had thought I would be! The hot flashes , im not gonna lie, were SUPER bad right away. I find that they are starting to fade. My Dr. told me they would be kind of bad for a year or so. In my opinion, it's a small price to pay for the peace of mind having this surgery has given me, and knowing my risk of ovarian and uterine cancers are no longer there.
I would DEFINATELY find out if you're a candidate for the robotic assisted surgery Mary - you will be amazed at how quick your recovery is and how little pain and discomfort there is.
There is a website called "Hyster Sisters" that you can look up, they have message boards you can browse through and find lots of helpful info, and they have a free book about hysterectomy written by patients that they can send you.
*good luck and hugs*
heather

cathyp

Heatherbelle said:

my experience - would do it again in a heartbeat.
Hi Mary
I'm almost 18 months post BC diagnosis. I also had bilateral mastectomies. A/C/T chemo. I'm one of those "almost" triple negative, being Her2 and ER- but barely (1-4%) PR +. But, I found out that I am BRCA1+, so my oncologist recommended a hysterectomy. I had the surgery in August, everything removed. I had the DaVinci robotic assisted surgery, and I would do it again in a heartbeat. My grandmother died of ovarian cancer when she was 52, my mom had breast cancer last year as well as "female problems" my entire childhood, so I have that icky stuff going on in my family too.
I had a 1 night hospital stay, NO cramping, the night after my surgery I was sore in the abdominal area, but other than that I was amazed at how great I felt. I was still restricted in what I could do, limited to not lifting or carrying anything over 5-10 lbs for a few weeks. I have 5 small incisions on my belly that are healed over now, tiny little scars.
I had no hormone replacement therapy, and the hormonal issue is NOT as bad as I had figured it would be. I was a little weepy for the first few weeks after, but not the basketcase I had thought I would be! The hot flashes , im not gonna lie, were SUPER bad right away. I find that they are starting to fade. My Dr. told me they would be kind of bad for a year or so. In my opinion, it's a small price to pay for the peace of mind having this surgery has given me, and knowing my risk of ovarian and uterine cancers are no longer there.
I would DEFINATELY find out if you're a candidate for the robotic assisted surgery Mary - you will be amazed at how quick your recovery is and how little pain and discomfort there is.
There is a website called "Hyster Sisters" that you can look up, they have message boards you can browse through and find lots of helpful info, and they have a free book about hysterectomy written by patients that they can send you.
*good luck and hugs*
heather

are your doctors recommending hysterectomy?
First of all, are your doctors recommending a hysterectomy? It isn't always the standard of care after breast cancer. Are you Braca+?

I had a laproscopic hysterectomy Dec 2010 that included removing my last ovary. For 3 years I had elevated CA125 levels and complex ovarian cysts. I had a double mx for IDC in Jan 2008. The BC was a result from radiation treatments for Hodgkins Lymphoma in 1989. Could not do radiaton again, chemo or tamoxifen.

My doctors and I truely agonized over removing my last ovary. Ovaries naturally protect your cardiac health. Since the removal, my LDL with exercise and stellar diet is 126. (It needs to be 70, I had a TIA and have radiation induced carotid artery stenosis and valve stenosis). My point in mentioning this, it is a very complex issue with pros and cons that needs a lot of medical recommendations/opinions. I had 4 opinions from the leading cancer centers and it still wasn't a black and white answer.

I agree that Hyster Sisters is an excellent resource.
Best of Luck in your decision.

Lynn Smith

cathyp said:

are your doctors recommending hysterectomy?
First of all, are your doctors recommending a hysterectomy? It isn't always the standard of care after breast cancer. Are you Braca+?

I had a laproscopic hysterectomy Dec 2010 that included removing my last ovary. For 3 years I had elevated CA125 levels and complex ovarian cysts. I had a double mx for IDC in Jan 2008. The BC was a result from radiation treatments for Hodgkins Lymphoma in 1989. Could not do radiaton again, chemo or tamoxifen.

My doctors and I truely agonized over removing my last ovary. Ovaries naturally protect your cardiac health. Since the removal, my LDL with exercise and stellar diet is 126. (It needs to be 70, I had a TIA and have radiation induced carotid artery stenosis and valve stenosis). My point in mentioning this, it is a very complex issue with pros and cons that needs a lot of medical recommendations/opinions. I had 4 opinions from the leading cancer centers and it still wasn't a black and white answer.

I agree that Hyster Sisters is an excellent resource.
Best of Luck in your decision.

I had a hysterectomy
I had a total hysterectomy when I was 48.I contemplated whether to have my ovaries out.I had a fear of a dramatic change in my body.After some thought I opted for it.My reason was I ran into a former neighbor. Her mom had passed away with cancer.I asked her daughter where it was.The young lady said her mom had female cancer.I said "NO your mom had a hyserectomy".She said they didn't take her ovaries so she died of ovarian cancer.That preyed on my mind and was the reason I chose a total hysterectomy.Also I know ovarian cancer is one of the hardest cancers to dx.Usually it is to late before it is found.One lady was treated months for bowel problems but later it was found she had ovarian cancer.

With this breast cancer dx and needing to take tamoxifin helps. At least I know no uterine cancer or thickening of the uterus or a risk of a deadly ovarian cancer dx in the future.

I agree with cathyp it isn't a black and white answer. No knows what to do. Now that my choice is final I feel I made the right decision.One less place to get cancer.

Lynn Smith

Ballerina

Lynn Smith said:

I had a hysterectomy
I had a total hysterectomy when I was 48.I contemplated whether to have my ovaries out.I had a fear of a dramatic change in my body.After some thought I opted for it.My reason was I ran into a former neighbor. Her mom had passed away with cancer.I asked her daughter where it was.The young lady said her mom had female cancer.I said "NO your mom had a hyserectomy".She said they didn't take her ovaries so she died of ovarian cancer.That preyed on my mind and was the reason I chose a total hysterectomy.Also I know ovarian cancer is one of the hardest cancers to dx.Usually it is to late before it is found.One lady was treated months for bowel problems but later it was found she had ovarian cancer.

With this breast cancer dx and needing to take tamoxifin helps. At least I know no uterine cancer or thickening of the uterus or a risk of a deadly ovarian cancer dx in the future.

I agree with cathyp it isn't a black and white answer. No knows what to do. Now that my choice is final I feel I made the right decision.One less place to get cancer.

Lynn Smith

Hi Mary
Hi Mary, two years before I was diagnosed with breast cancer, I had endometrios and fibroids. I had a parcial hysterectomy only because I begged my gyne if my ovaries were ok would she leave them in. I was afraid of going into menopause and I heard horrible stories about not wanting to have sex or it was unpleasurable. I expressed these concerns to my gyne surgeon and because I am married, she promised she would leave them in if they were ok. Well, sex was a little weird at first. I felt like a virgin even with the lubricant. I couldn't do the standard position, man on top, it was painful. However, after everything loosened up I came up with lots of new positions so that's all good. However,I was diagnosed with breast cancer 2009. At the same time, I developed cysts on my ovaries and was told they should dissapear in a few months. Also, during this time, I developed irritable bowel syndrome. Just in the past three months, I've had chronic pain in my side,abdomin and pelvic. I had blood in my urine and bowel not a lot but enough to see on tissue. I recently had a ct scan and ultrasound of the ab and pelvis. The cyst did not dissapear and they have grown. I am going to have my ovaries removed and tested for cancer soon. I believe I have endometriosis of the ovaries but I need a laproscopy. I wish I would have had a total hysterectomy, but who knew.
Ballerina

eliex2

Hysterectomy
Hysterectomy is very personal.
It is castration; still having hot flashes after 10 year.
No libido,
cancer came back after getting rid of the so call
hormone producing fire balls.

DebbyM

mamolady said:

ovary out
Mary,
I had the ovary out mostly so I wouldn't have to go on tamoxifen. I preferred to go on arimidex because of the side effects of tamoxifen. Also being ER and PR +, it helps to eliminate the estrogen. The ovary was very simple surgery, the hot flashes I would have either way. The full hysterectomy is still pretty quick to recover from I believe but wait to hear what others say.
Cindy

Wishing you early congrats
Wishing you early congrats Mary on finishing chemo!

New Flower

eliex2 said:

Hysterectomy
Hysterectomy is very personal.
It is castration; still having hot flashes after 10 year.
No libido,
cancer came back after getting rid of the so call
hormone producing fire balls.

Weak immune system
Osteoporosis has not been mentioned is very real side effect
Also make sure you completely recover fr Chemo
After I finished Chemo I was sick from nothing for the fort 6 months
Good luck

disneyfan2008

I had lumpectomy April 08,
I had lumpectomy April 08, radation until June 08 then tamoxifen for 3 1/2 yrs with no obvious side effects. I did end up with ENLARGED UTERUS, followed by bleeding (3 yrs post meno) I had total hysterctomy May 2011-just over 6mths ago now..

ALL IS well...and back on Tamoxifen...it took me 6 wks to FELL OK and 8 weeks exactly LIKE BACK to myself..(like someone flipped a switch)

Denise