No Date: Fear & anxiety: surgery in next few months, need words of wisdom (UPDATED)

Hi Ladies,

I have to get this off my chest as I am scared about so many things.

I have a complex mass, left ovary. As a breast cancer survivor, hysterectomy is best option so cancer has less places to try to return & I can get off Tamoxifen. 2 of my MDs advised I could wait & see if it shrunk & proved to be a silly little cyst. Followed that advice, but now waiting & watching is over, as are the annoying abdominal & painful transvag ultrasounds...the golf ball or whatever it is in there needs to go as it is unchanged. Ultrasounds repeatedly show a sizeable mass at 4.9 to 5.5cm. I’m making the appointment for consult (re-consult? It’s been a long time so assume I have to repeat the consult) with gyn onc to discuss surgery options & get it scheduled. My breast cancer surgery was the only surgery I’ve had in my life (and my only hospitalization) if you don’t count tonsils (outpatient). I had a horrible reaction to the anesthesia with my BC surgery. I am sure the professionals will know how to handle that, but the what-if’s in my head won’t stop.

CAUTION: TMI & very wordy Read on if you dare.

I’m so worried, scared & anxious about which surgery to choose, what if it’s not benign, how to tell my employers, how to make rent on disability pay, what will happen to my body, will surgical menopause exacerbate my cognitive impairment (chemo brain) or lack of desire or hot flashes or fatigue or disinterest in doing anything or mood swings? AHHHHHHH

My fears:

• Will the surgeon have difficulties getting through this horrid body fat??? Between Tamoxifen and the Megace/Effexor combo for hot flashes, I've gained almost 40 lbs. that I cannot shake. All belly fat, almost one of those dewlap tummies.
  
• Will a hysterectomy make my current symptoms worse? Chemo & now Tamoxifen stopped my periods, so I've got temporary medically induced menopause. Symptoms are debilitating...fatigue, nausea, hot flashes, night sweats, zero-to-60 rage from nowhere, hatred toward most people & things or crying over nothing depending on what mood swings come my way, zero interest in anything fun I used to do, difficulty with concentration, memory and organization (chemo brain or menopause? Who knows), weight gain with change in body shape (Oh, to have my 24" waist, hourglass figure I had before chemo...went from a pear to an apple & it's sickening). My doctors aren't sure if it's the menopause state or after-effects of chemo & radiation or my meds...or a combo of any of the above. Med onc & gyn onc said some could go away, or I could be worse. What's the real deal?
  
• Losing my job. Since last July when they “dinged” me on my review because I “worked less than full time due to health issues”- breast cancer surgery, chemo and radiation (I took less than the recommended time off , but they don’t see it that way). 2 of my 4 bosses (the owners) told me they've been very generous with time off for my health, but they want me to be here all day, every day. I’ve got a reasonable accommodation for disability to have a flexible schedule since have long-term side effects (or reaction to my meds) most mornings such as hot flashes from hell that drench me & drain my energy, nausea & diarrhea. Sometimes I have to stop on the way into work because something wants to come out one end or the other. Bosses do not understand why I still have side effects since I am in remission & the surgeon "got everything". I was denied time off for 4 clinical trial appointments (1 per week for a month) as it was "shocking" and "that much time off is unacceptable". They want me here during business hours every day unless there are extenuating circumstances (male boss said that) and if I am too sick to work, they’ll find someone who is not (female boss – nice, huh?) Been here 11 years now & was out a total of 12 weeks for the BC treatments in 2007 & 2008, yet they still hold it against me. I must keep my (GOOD) insurance & money coming in. I support myself & am paycheck to paycheck. They can’t fire me for needing surgery legally, but they can micro manage me & find fault with SOMEthing to get rid of me. My predecessor had to get a pacemaker after 11 years, and in year 12, they became super critical & nitpicky & encouraged her retirement. She told me to be careful when I left for surgery. Now I know why. There is no time to put this off in case it’s not benign, plus Obamacare already made me lose my better insurance & may force my office to go HMO-only. Won’t be able to see any of my current physicians OR the gynecologic oncologist who I’ve chosen. Soooooooooooooooo…………..how do I deal with this one!? My anxiety makes my symptoms worse, so I’ve had even more stomach problems. Ick!
  
• Internal organ problems after surgery. I haven't asked my doc "what happens when those parts are gone? Does everything else go PLOP and bottom out? Do you sew things down? Is there a gaping hole in there that I'll feel? Will other parts rearrange and fill it? What gives!?!?
  
• I'll never be "ME" again. Can't put this one into words exactly, but my mind, my body, my thoughts, my feelings (or lack of them) & distance from who I used to be before cancer are bad enough, but definite surgical menopause may make my dream of recovering to a happy, healthy, pretty, positive & competent ME - who I used to be - will never come to be.
  
• The dreaded Big C - the #1 fear, of course, but I am not going to mention this stupid thing growing in me might be the C word. It has to be a benign stubborn cyst. So there!

Any advice? Warning? Tips? Winning lottery numbers?

Looking forward to hearing your words of wisdom, oh brave & wise ones as I navigate this crazy path to officially becoming a HysterSister.

* * * THANK YOU * * *

Hi there

Just wanted to say I'm right here with you! I'm a BC survivor, got to skip chemo because of my oncotype but have been on tamoxifen for over 2 years and have now developed an "enlarged ovary with an ominous nodule, something about the bloodflow, blah blah blah" and they want to take it out asap. And heck, since you have a BRCA mutation, as long as we're there...let's take the whole lot!

I have the same questions/concerns/fears as you. After much soul searching and research I finally decided on a full hysterectomy for various reasons. I'm having it done vaginally with the robot. Tried to watch a youtube video to prepare myself mentally, but got creeped out!

My gyno onc tried to subdue my fears/concerns but he basically acted like problems (prolapse, incontinence, sexual dysfunction, etc) aren't as common...which I find hard to believe but am going to hope that I'm one of the lucky ones!

Try to find and read the positive stories. Hopefully some members will come by with a few and reassure us.

Oh my! Sorry, no real words of wisdom. I will say that if I only had 40 lbs of excess fat, I would be thrilled! Surgeons had no problem finding my uterus and its fibroids!

Your boss is an *** - pure and simple. I don't know what to say - maybe call a lawyer? Or I'm sure there is some government agency that handles those types of issues. One thing - one you get it on record, it should be harder for them to nit pick, although if you live is an "at will" state it might not matter.....

But what does matter is your health! I always remember the words of an office mate of mine - - "I was looking for a job when I found this one"! Something will work out - - it just will. But if you don't take care of yourself, you truly won't have to worry about paying rent and having a job and stuff like that.

I know it had to be a sucky place to be - - and simply being told "Don't worry" and crap like I'm saying isn't likely to make a difference. But it is true - - things do have a way of working out.

Wishing for you the very very best....and hoping your boss gets hit upside the head with a 2 by 4 and results in his/her brain being restarted which will subsequently jump start their heart

Some of the questions you're asking are questions that you should bring up in your p/re-consult with your surgeon. Certainly there are plenty of ladies of size who've had hysterectomies. :-) Your weight and shape will influence your surgeon's choice of operating method, but should not make a hysterectomy impossible.

Re: the menopausal symptoms, you mention that you have a mass on your left ovary, so I'm assuming that you want that one to go? But that would still leave you with one ovary, which should be enough to prevent surgical menopause from setting in. Be aware that even in women who keep both ovaries, the surgery temporarily throws their hormones for a loop so that they experience menopausal symptoms. From what I've heard, this seems to last a few weeks.

In your case, however, where you're already experiencing menopausal symptoms, it might be that you don't notice any change at all! And it might be that if you can keep at least one ovary and get off the Tamoxifen, your situation may improve (at least until it's time for natural menopause).

Talk to your surgeon about whether you can keep the other ovary or not.

Internal organ problems after surgery: Unless you've got huge fibroids, your uterus is probably about the shape and size of a pear. Grapefruit-size would be considered large for a uterus. So no, there will not be a huge gaping hole. :-)

What generally happens is having the surgery will discom-bowel-bulate your intestines. They'll be fussy for a few weeks afterwards. Many women experience temporary constipation and gas. Some of us (like me) add diarrhea to that list - I had diarrhea my first week after surgery, constipation my third week! But eventually your intestines will settle out and rearrange themselves to take advantage of any excess space.

Everything else in your abdominal cavity should stay in place, held there by ligaments and by the folds of the cavity's lining. http://en.wikipedia.org/wiki/Abdominal_cavity may be reassuring to read.

Re: winning lottery numbers: hopefully the same ones as are on the tickets I already bought for the Friday and Saturday draws! *grin*

First I want to send you hugs and prayers for a successful surgery and speedy recovery.

I'm pre-op so can't add a lot about surgery but I am about 300 lbs and looking for an experienced Davinci Surgeon who knows how to deal with my size. I'm sure your 40 lb gain won't be any problem at all.

I sympathize with your work situation. In 2000 I was almost killed in an accident, hospitalized, surgery, nursing home. Returned to work in a world of hurt about 8 weeks out. I had seen previous co-workers cruelly phased out after illness /injury.

I could see the writing on the wall as they treated me badly and decided to apply for FULL disability through Social Security BEFORE I was decreased to half-time thus reducing what SS would pay for disability by half (this happened to other co-workers). I was approved by SS. The first 2 years were hell with no insurance before I could qualify for Medicare. However, If I had accepted half-time at work I would also have lost my insurance! If not for friends and relatives I don't know how I would have lived! At least I qualified for the higher SS disability amount by applying BEFORE they cut my hours. Not easy but - I MADE IT. I can so relate to what you go through at work.

Just what we need when fighting for our health and maybe even our lives!

God does have a way of providing in unexpected ways. This is not a rich early retirement but I have all my basic needs met - housing, food, medical care. The step down in living situation is actually worth getting away from that ugly rat race at work.

I HOPE YOU DO AS WELL AND BETTER THAN I HAVE.
I'll be praying for you.

I too am a BC survivor, my oncatype and staging did not require chemo or rad, but I was on tamoxifen and developed an ovarian cysts. No one told me this, but this is listed as a potential side effect of tamoxifen . I decided to have complete historectomy due to family history.. I was scared about the ovarian cysts being anything other than cysts, even though my gyn onc
Told me he didn't think they were cancerous.
I had the davinci hist on June 21 and have had a great recovery so far!! I haven't had any real pain. Gas pain was the worst! Keep the gas x on hand.
I'm happy with my decision to remove everything that could cause future problems, and my pathology was completely clean!
I'd avoid u tube for the davinci, although I did hear there is a u tube of the davinci making an origami swan!!!!
I had a positive experience, I hope you will too!!!

Did you switch from tamoxifen to an AI after surgery? I'd like to stay on the tamoxifen because other than the ominous enlarged left ovary, I've been doing fine. I was hoping tamoxifen will have nothing left to aggravate after it makes me remove all the lady bits! I want to avoid the AI's because of existing osteopenia. And tamoxifen is supposed to help build bone if you are post meno.

Yes, I am on a newer AI. My mom was on tamoxifen years after she had a hysto and had no side effects except hot flashes. She's 83 and still kickin!!
I'm not completely sure why my onc chose the AI but he did say fewer side effects.
I will have to ask more questions for sure! Thank u for sharing that!

UPDATE!

I had my usual ultrasound at the end of July 2013 for my wait-and-watch plan, and my onc MD saw something "unusual & unexpected" which could be one of several things, but "technically could be uterine cancer". As I'd already planned to go back to my gyn-onc MD, he went ahead & sent the results to get me on the fast track.

My appointment for new consult was made for mid-September. I emailed my employers. I got an email back saying of course I could take the time off, approving me as requested. Just over a week later, I was terminated. Despite my fears that might happen, I still was in disbelief. How could they!?



I lost my health plan at the end of August (they fired me 2 weeks into the month so there was no chance to have consult & surgery). COBRA was impossible on unemployment. I had to cancel my gyn-onc consult 9/2013 & onc followup 11/2013. As suspected, I cannot find a state exchange plan with any of my oncologists (especially my surgeon) on them, and am trying to get my nurse navigator to help me confirm if he is on ANY of the plans or Medicaid, as I am close to signing up for that since my unemployment maxed out. I have yet to be re-employed (but I have sought legal advice!) and yet to have surgery. I'm trying to hold it together so I don't lose my apartment. I never dreamed it would be this hard to find a job...last time I needed to was 13 years ago & it was a different world then. I hadn't built my savings back up from my breast cancer surgery & treatments yet, so I barely have one month's cushion left.

For all of you who answered me last year: THANK YOU...your replies, thoughts and prayers are appreciated! I re-read them for encouragement, and felt I owed you a progress report. Sending you the best & hope you all are strong, whole, healthy, happy and healed.

	Quote:
Originally Posted by brca2vus Hi there Just wanted to say I'm right here with you! I'm a BC survivor, got to skip chemo because of my oncotype but have been on tamoxifen for over 2 years and have now developed an "enlarged ovary with an ominous nodule, something about the bloodflow, blah blah blah" and they want to take it out asap. And heck, since you have a BRCA mutation, as long as we're there...let's take the whole lot! I have the same questions/concerns/fears as you. After much soul searching and research I finally decided on a full hysterectomy for various reasons. I'm having it done vaginally with the robot. Tried to watch a youtube video to prepare myself mentally, but got creeped out! My gyno onc tried to subdue my fears/concerns but he basically acted like problems (prolapse, incontinence, sexual dysfunction, etc) aren't as common...which I find hard to believe but am going to hope that I'm one of the lucky ones! Try to find and read the positive stories. Hopefully some members will come by with a few and reassure us.

Thank you so much! Hoping all went well with your surgery & recovery, Survivor Sister!!!!