2010: Fibroids and Lupron questions --Update: I want to cancel the Lupron and myomectomy (2010) | HysterSisters
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2010: Fibroids and Lupron questions --Update:  I want to cancel the Lupron and myomectomy (2010) 2010: Fibroids and Lupron questions --Update: I want to cancel the Lupron and myomectomy (2010)

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  #1  
Unread 11-15-2010, 10:12 PM
2010: Fibroids and Lupron questions --Update: I want to cancel the Lupron and myomectomy (2010)

I was recently diagnosed with fibroids and my OB-GYN referred me to an oncologist who has prescribed 3 months of Lupron Depot injections and wants to follow up with more ultrasounds after that.

He said something about maybe avoiding surgery by shrinking the fibroids or at least getting them small enough to operate.

I am confused about this because, from what I've read, the Lupron is not a cure and surgery has to be done afterward or they start growing again.

Another thing is the size of my fibroids. When I had the ultrasound, the largest was 4.9 x 3.8 x 4.2cm and my uterus is now the size of a 14 week pregnancy.

I keep reading about women with huge tumors and uteruses that are much more enlarged than mine. Why do mine have to be shrunk before I can have surgery?

And how soon does surgery usually need to take place after the injections stop?

I know these are questions that I should have asked the doc, but I had just met him, had an exam, was so nervous that I was shaking and could only think to ask about the side-effects from the drugs!
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  #2  
Unread 11-16-2010, 02:22 PM
Re: Fibroids and Lupron questions

cairi

I had 3 months of Lupron injections before my surgery.

You're right in that Lupron is not generally regarded as a "cure" for fibroids, quite simply because the results are only temporary. For that reason, my surgeon was very particular with the timing of surgery following the last injection ~ I think it was within 2 - 3 weeks.

I had one enormous fibroid which shrank by an amazing 66%, thus making the surgery a lot safer and I was able to have a horizontal incision instead of a vertical. In the case of fibroids, Lupron is usually prescribed for those very reasons ~ safety and a less invasive surgery. Many ladies are able to avoid an abdominal incision altogether.

The side-effects were nothing I couldn't handle ~ hot flashes and aching joints ~ and wore off very quickly when the drug wasn't topped up with a fourth injection.

Of course, everyone's experience and results are different and I hope others will be along soon to share.

Sending all good wishes and positive thoughts your way!

  #3  
Unread 11-16-2010, 07:03 PM
Re: Fibroids and Lupron questions

Thank you so much for your response!

I have started to get cold feet about the Lupron and surgery.

How long did it take you to recover from your surgery?

I am really stressing over missing work after the surgery.
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  #4  
Unread 11-17-2010, 03:19 AM
Re: Fibroids and Lupron questions

Hello again!

A hysterectomy is a big deal, and major surgery, so you need to be very sure and comfortable with your decision.

Everyone's recovery experience is different and there are less invasive procedures which usually result in a quicker recovery compared with abdominal surgery. However, I did very well with the abdominal surgery and recovered smoothly from day one. The initial and vital healing does take approximately 6 weeks with full recovery then anywhere from 3 months to a year.

Keep asking questions ~ particularly of your doctor ~ and you may also find further medical opinions very useful indeed.

Take care!

  #5  
Unread 11-17-2010, 09:02 AM
Re: Fibroids and Lupron questions

Hi Cairi,
I had 4 mo of Lupron injections for a large fibroid and enlarged uterus. Prior to receiving the injections, I was very anemic. The shots stopped the bleeding so I could build up my blood for surgery. I had the daVinci surgery and the shots shrank my uterus making it easier for the surgeon to remove with minimal blood loss. I agree with pooodle in that getting other medical opinions can be a good thing. I got a second opinion and ended up going with my second opinion surgeon. Good luck to you!
  #6  
Unread 11-17-2010, 10:57 AM
Re: Fibroids and Lupron questions

I'm supposed to get a myomectomy if I do have surgery. I'm sorry that I didn't specify.

My doc recommended a hyster until he realized that I'd never had children and then he referred me to the specialist.

Do you think that the specialist is giving me Lupron to avoid abdominal surgery?

If so, that would be great!

So, with an abdominal surgery, would you say you had (or would have had) to take off six weeks of work (no driving, etc.) or that it just took that long to get pretty much back to normal?

P.S. Just added a signature to help explain my history. Sorry, I'm still new here and figuring things out! :)
P.P.S. My sig would say this (it were showing up). Maybe with the next post. :p

Dx: Fibroids, Sep 2010
Rx: Lupron Depot, Nov 2010

Waiting for the first injection and possible myomectomy.



  Quote:
Originally Posted by pooodle View Post
Hello again!

A hysterectomy is a big deal, and major surgery, so you need to be very sure and comfortable with your decision.

Everyone's recovery experience is different and there are less invasive procedures which usually result in a quicker recovery compared with abdominal surgery. However, I did very well with the abdominal surgery and recovered smoothly from day one. The initial and vital healing does take approximately 6 weeks with full recovery then anywhere from 3 months to a year.

Keep asking questions ~ particularly of your doctor ~ and you may also find further medical opinions very useful indeed.

Take care!
  #7  
Unread 11-17-2010, 01:28 PM
Re: Fibroids and Lupron questions

Hi Cairi,
I know my dr told me a myomectomy was as risky a procedure as having a hyster, for ME. I'm in my late 40's no kids and my fibroid was quite large and I was anemic. Maybe one of the other ladies who had a myo and/or hyster can better tell you their experience. I'm a firm beliver in getting all the information you can to make the best decision for YOU. You need to be comfortable with what you decide, after all, it's your body. Good luck!
  #8  
Unread 11-17-2010, 03:32 PM
Re: Fibroids and Lupron questions

Hi (((cairi)))

I'm afraid I can't share recovery experience with regard to a myomectomy or compare that surgery with a hysterectomy.

If you've not done so already, it will help you to try a forum search for "myomectomy", which will reveal any other myomectomy experiences.

Good luck!

  #9  
Unread 11-17-2010, 07:48 PM
Re: Fibroids and Lupron questions ~ myomectomy

Thank you peacelily and pooodles!

I think that I have a better idea of it now that I've read your experiences.

I had never considered blood loss and anemia being a problem before, but I guess that makes sense in the case of a hyster and a myo.

My symptoms have been coming on very gradually this past year (though my doc said that the fibroids have been there "for years") and it seems like since the diagnosis, things have gone downhill faster than I would have thought. And that was not even 2 months ago.

I don't think that I'm extremely anemic all month long, but during my period, i am having to take iron to keep from feeling like I'm going to pass out and Lysteda to be able to go to work without fear of a disaster -- so it's not ideal.

Right now since the symptoms are not that bad, I find myself wanting to postpone surgery bc of school and work, but when I last saw the doc I was having my period and had just missed too days of work and thought that I needed to do something immediately.

So when the less invasive option (lupron and probably myo) was presented, I jumped at it.

Now I wish that I could postpone it so that I can register for classes for January-May, and with surgery seemingly imminent, I don't feel like I can do that and it's driving me crazy!

I will look up more on myo recovery and try to get a better timeline from the docs.

Thanks again!
  #10  
Unread 11-17-2010, 08:28 PM
I want to postpone Lupron and mymoectomy. How can I ask?

I was diagnosed with fibroids recently.

I think that with iron and Lysteda, my symptoms are manageable. They are really only a problem during my period which is still the normal length -- only heavier.

My OB-GYN first suggested a hyster and then backed away from that when he looked at my chart and realized that I have never had children.

He referred me to an oncologist who has prescribed Lupron (and Vivelle to help with the side-effects) and I've already turned it in to the pharmacy and scheduled my first injection (to be done at my OB-GYN's since it's much closer).

Now I'm getting cold feet.

I am trying to plan my classes for next term and I don't see any way that I can do this without knowing whether or not I will have surgery and how long the recovery will be.

Also, even though I want to leave open the possibility of having children open for a little while longer, I don't have my heart set on it.

My docs see the myomectomy as giving me a chance to have children. I see it as a way to avoid a hysterectomy hopefully forever, but at least until I am *more* okay with it.

I'm kind of battling with trying to be responsible and sticking to the "agreement" with the doc to follow the treatment prescribed and on the other hand I am thinking:

"Why can't I just tell him I want to wait 6 months? It can't hurt to ask, can it?"

I'm afraid that he won't want to treat me since I'm being so inconsistent and/or that after 6 months I won't have the luxury of choosing what kind of surgery I want to have.

I'm also afraid to miss more work to drive very far away to discuss this when I should have brought all of this up when I had my appointment.

I just want to cancel all of the appointments and hide from it until I'm forced to do something. But I know that that will only lead to bigger problems.

In sum, I don't want Lupron or sugery right now. I think that my symptoms are manageable, but I'm afraid of them getting worse fast and the consequences of that.

I just don't know if I have the right expectations about all of this or understand what my options really are.

Also, I feel bad that the pharmacy has ordered my Lupron and has it waiting for me and wonder whether I'm obligated to pick it up if I do postpone treatment or whether it matters to them at all.

Basically, I'm very scared and confused.
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