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To operate or not May 17, 2015

Posted by Judy in Musings.
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I need to pick your brains, my trusty blog followers.  I need to make a pretty big decision in the next few weeks and, as with the mastectomy surgery decision, I’m kinda going crazy!  But first, here’s a bit of background info.  You may remember the fibroid that was “discovered” during my CT scan back in December of 2013.  I say “discovered” because when the medical oncologist was all “Whoa!  You need to get that looked at!”, I was all “Um, I already knew about that, it’s no biggie!”  Well, it’s becoming a biggie and causing all sorts of problems.  Actually, I’m not positive that it’s the root of my heartburn problem, the weird random pains in my side and my intestinal foolishness, but it’s large enough that I’m willing to bet it is the cause.

I’ve spent the past 2 or 3 months talking with different doctors to get my options sorted out and I’ve come up with two options:  uterine fibroid embolization and myectomy/hysterectomy.  (Although it seems this has nothing to do with breast cancer, it’s actually tangentially related, which is why I’m sharing it here!)  I’ll give some brief explanations of the two procedures.

Uterine fibroid embolization (UFE) is a minimally invasive procedure where a catheter is inserted into the femoral artery, and then tiny pellets are injected to block the uterine arteries that are feeding the fibroid.  The uterus is resilient, so it will figure out a different way to get blood flow.  The fibroid, on the other hand, will slowly necrotize and shrink roughly 40-60%.  The procedure requires an overnight stay in order to help manage the pain (which is apparently quite intense), and then you go home the next day and pretty much go about your business.  What this procedure does not do is completely get rid of the fibroid, it just reduces the size, but it’s very successful in helping to do away with many of the symptoms.

The myectomy/hysterectomy surgeries are not really minimally invasive.  A myectomy is the removal of just the fibroid.  A hysterectomy is removal of the uterus, plus any of the following:  ovaries, fallopian tubes, cervix.  Both of these surgeries can be done either laparoscopically with a robot or with a large vertical incision in the abdomen.  The robotic surgery would result in three small incisions in the abdomen, and would require roughly 2 weeks of lifting restrictions and an overall shorter recovery.  The one downside is that due to the size of the fibroid, it would take a fair amount of time, 3-4 hours, to cut it up and remove it through the small incisions.  Doing a traditional hysterectomy with the large abdominal incision would be much faster, about an hour and a half, but would require 6 weeks of lifting restrictions and lots of recovery time, because it’s major surgery.  Unlike the UFE, both of these procedures would completely remove the fibroid.

So I should take a minute to discuss why this fibroid is a problem and needs to be removed.  After all, many fibroids are asymptomatic and can just stay in place.  In fact, I’ve had this fibroid for a long time, probably 5-8 years without any problems.  So what’s the big idea now?  Well, it’s enormous!  Seriously, it’s like I’m 3 months pregnant because the fibroid is the size of a small melon!  I had an MRI done of my abdominal area two weeks ago and we were able to see those images this past week.  I wish I had them to share with you, as the fibroid is really quite remarkable.  If you are looking from the side, the fibroid fills the entire space from my abdomen to my spine.  When seen from the front, it takes up a third of the space from left to right.  The top to bottom measurement is the largest, measuring 5 ½ inches.  This means that the top of my uterus is just above my belly button.  That’s not where it’s supposed to be, unless you are pregnant!  Keeping in mind the fact that I’m 5’1” with a VERY short torso, this fibroid is basically taking up most of the space in my abdominal cavity, meaning that anything else that is supposed to be there is squished.  Heck, they couldn’t even find the left ovary with the MRI because it was so squished behind something!  So yes, something needs to be done.  The question is, what?

I like charts, so I’ve made one with the pros and cons.  But before I share the chart, you are probably wondering what in the world this has to do with breast cancer.  I am currently taking an anti-estrogen medication called Tamoxifen, and I’ll be taking it for another 4.5 years.  The purpose of the medication is so suppress the amount of estrogen so that in case there still is cancer floating around my body, it will have fewer places to attach itself.  Here’s the rub:  the drug works as both an agonist and antagonist towards estrogen.  The estrogen in breast cells is treated antagonistically, or suppressed.  The estrogen in the uterine cells are treated agonistically, or enhanced.  See where this is going?  The drug I’m taking to help prevent the return of breast cancer is making the fibroid grow.  Nice, right?

The other way this is related to breast cancer is because of the ovaries.  If I choose to have a hysterectomy, the question of whether or not to take the ovaries needs to be addressed.  Generally, they don’t need to be taken.  But, it might be wise to have them removed since they are biggest producer of estrogen and removing them would further reduce the chance of a recurrence.  Estrogen is still produced in other parts of the body, so I’d still have to take drugs, but it would be a different drug called Arimidex, which is an aromatase inhibitor.

Okay, here’s the chart.

Procedure Pros Cons
UFE Minimally invasive Doesn’t get rid of the fibroid
Quick recovery time, just a few days May or may not alleviate the symptoms
Relatively low risk
Done under moderate sedation, which means no intubation
Myectomy/hysterectomy Completely removes the fibroid Major surgery which requires intubation (LMA is not an option due to the position one is in during the surgery)
Robotic/laparoscopic Shorter recovery time, 2-3 weeks Longer surgery = longer intubation (3-4 hours)
Only 2 weeks of lifting restrictions There’s no guarantee that this size of a fibroid can be treated laparoscopically.   If it’s too large, they’ll have to switch to the traditional hysterectomy
Traditional hysterectomy Shorter surgery = shorter intubation (1-2 hours) 6 weeks of lifting restrictions, which means no babywearing for the 2.5 year old, who is REALLY into that now.  He already had to be weaned early, not sure I want to “wean” him from wearing early, too.
Long recovery time 4-6 weeks
Ovary removal Greatly reduces the chance of breast cancer recurrence Would require a change in medication.  Right now, Tamoxifen is great, I have no side effects.  Who knows if that will be the case with Arimidex.  I could be swapping one set of problems with the fibroed for another set with the meds (hot flashes, joint pain, sore throat, nausea, vomiting, numbness/weakness in hand/wrist, etc.)

I think I’ve thought of all of the pros and cons, but maybe a fresh set of eyes on the situation will reveal more.  The other thing to consider is if I do the UFE and the results are not satisfactory, I can always opt to go the surgical route.  If I do surgery off the bat, well, there’s no going back from that.

And one more thing . . . .when am I going to catch a break?  I’m so done with doctors and health drama and foolishness.  I want to be healthy again.  That’s not too much to ask, is it?  I’m just gonna go sulk in the corner while you all contemplate a solution to my current dilemma!

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Comments»

1. Terese - May 17, 2015

This stinks, Perla! I’m so sorry that things continue to be a challenge in the health department. One of the downsides to removing the uterus/ovaries is the onset of menopause, and thus the onset of osteoporosis risk. Many women also lose most sexual function after a hysterectomy. (http://www.hersfoundation.com/docs/Sexual_Loss.html)
So that will be a whole bunch of things to worry about.

If it were me, I’d have to resist the risk for a quick-fix or an all-in-one option, as I do love to skip steps/save time/avoid ongoing maintenance. It’s always possible to take more out later, but not to put any organs back. If it were me, I’d lean toward dealing with just the fibroid, probably with the robot surgery. But obviously I’m not approaching this decision at the tail end of the ordeal you’ve been through, so take my thoughts with a grain of salt.

-Terese

Judy - May 17, 2015

Thanks for your thoughts, Terese! I’m sort of less worried about the onset of menopause since there’s a really good chance that I’m there anyway because of chemo and the Tamoxifen. And because the Tamoxifen reduces the estrogen floating around, it also puts me at risk for osteoporosis, so I think that’s sort of a wash, I think! Something to talk to the oncologist about, I guess.

2. Mary - May 19, 2015

Perla/Judy, I’m almost flabbergasted at all of this but I know that trouble comes in bunches~meant to discourage us, you know. I’m praying that you will conquer all of these set-backs and that your loved ones will have good courage throughout, also. Know you are loved and that disease doesn’t win. It just aggravates and inconveniences and just plain ticks us off!! Please know that I’m available(for what that’s worth!) day or night if you want to talk, complain, bitch or all three. I love you like a daughter. Ask your mom for my number, just in case. Mary

Judy - May 19, 2015

Thank you, Mary! So much love for you, too! ❤

3. A.R. - May 29, 2015
Terese Makemyday McIlvain - June 1, 2015

That FDA announcement makes me think it’s not worth the risk of doing the laporoscopic method. More cancer? Not in a body that’s already had so much cancer treatment.

I know weaning would be hard right now, so could you do UFE and then do the myectomy when you feel like it (if it’s still needed)?

You could put the options in brackets, pairing them up. Pick round 1 favorites, than pair those against each other, and do it again. Sometimes it’s easier to pick between two than many choices.


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