A couple years ago, I was diagnosed with multi-centric IDC breast cancer, and, because of my family history, I was genetically tested, and I have the BRCA2 mutation. I had lumpectomy with sentinel node biopsy (clear), double mastectomy with immediate reconstruction, tissue expander exchange, and chemo. Having waited my entire life for the diagnosis due to my extensive family history, my attitude toward the diagnosis was, "Finally! Now, lets get this over with!" My husband said I treated that year of my life like I had a very bad cold. I was inpatient for less than 24 hours for the first 3 surgeries, and, while going through chemo, I didn't miss a day of work.
My only disappointment was that I felt my boobs could have been a bit bigger (LOL) because I was barely an A-cup prior to my diagnosis, and part of my pectoral muscle on the affected side had to be removed for clean margins, so I have what I term "a crater," an indentation, at the top of the affected breast above the implant.
Then came the suggestion that I have a total vaginal hysterectomy with bilateral salpingo-oopherectomy to reduce my risk of ovarian cancer due to my genetic mutation and risk of uterine cancer due to the carcinogenic properties of one of my chemo drugs. My female oncologist, who also has a genetic mutation, had already undergone her TVH-BSO by the time she had suggested it to me, and she made no mention of the side effects of the procedure.
My period had stopped shortly after my first chemo infusion, and I was started on Tamoxifen after chemo ended. I had a few mild hot flashes, but that was really it. My energy level was good, and I didn't think much of the final surgery. Once my breasts had completely healed after an in-office reconstruction of my nipples through a simple flap procedure and tattooing of my aureolas, I thought, ok, ready for the TVH-BSO.
Pit was the worst decision of my life.
Because it was a vaginal removal, I felt great after the surgery, and I was discharged less than 24 hours after walking in as an outpatient. No bleeding, no pain, peeing fine, out I go.
The trouble started--or at least I began noticing the trouble--about six months ago.
I have gained 20 pounds in a year without a change in my eating habits or activity. My hot flashes are nearly debilitating. I have had patients look at me with concern as sweat drips off my forehead, and I attempt to laugh it off without giving information. In isolation rooms, it's even worse, and I sometimes feel lightheaded and like I'm on fire! I am on 800 IUs of vitamin E and extended release Lexapro for hot flashes.
Every joint south of my waist screams when I get up in the morning and after getting up from a charting session at work. I have been diagnosed with chronic posterior tibial tendinitis and a talar dome lesion in my left ankle that prevents me from being able to do weight-bearing plantarflexion and running. I have to wear high tops and a sole insert while at work to keep from limping. I had a Dexascan, and I have osteopenia. My calcium levels are fine, but it's obviously being leached from my bones. We are struggling with getting my D3 levels up, and I am now on a once-a-week prescription for 50,000 IUs of ergocalciferol and daily calcium supplements.
My vagina. Oh, my vagina, how you betray me! I took a look with a mirror, and I self-diagnosed with Dr. Google that I have vaginal vault prolapse. Because of the appearance--and despite the fact that I have one of the most loving and supportive husbands who was ever created and who is yearning for me--I refuse oral sex out of embarrassment. Speaking of sex....who needs it! I have no libido, no lubrication, and mild-to-moderate dyspareunia. Orgasms are difficult-to-impossible to achieve and more than one attempted lovemaking session has ended with me crying in my perfect husband's comforting arms.
Emotionally, I have become a little distant, as my husband has told me with pleading, loving eyes. There are times where I daydream of a deserted island with a good book and an iPod or hope I am scheduled for work on the day of a planned get-together.
Lets not talk about sneezing or coughing and peeing a little at the same time!
I am fatigued. Fatigued beyond belief. Drag myself off the couch fatigued. Not sleepy, just achy-bone tired. It takes all my energy to do laundry in a 3-level house. What's more concerning is the more frequent palpitations and unexplained shortness of breath I feel. My kids say, "Mom, are you out of breath? Let me carry that for you." The ones I've been charged to protect are now protecting me.
During my last oncology appointment, all I did was cry and talk about my post-hysterectomy symptoms. Because I can't have hormone replacement, there's really nothing more that can be done!
Ok, I'm done. I am unashamedly writing this because I do need a pat on the back, a cyber-hug, and some practical advice. And I end this post with tears of frustration running down my face. Thank you in advance. Just thank you.
Jul 9, '14
I hope you don't mind that I prayed for you.
This is too much for a person to deal with alone.
Second opinion? Support group?
You shouldn't have to live like this.
Jul 9, '14
Dudette, wow. You have been through so much. Figures that the thing that brings you to your knees is that hyst. I had a vag. hyst, also. Mine was for repeated infections of a fibroid. I was so glad to be rid of the offending organ! They did a tightening at the same time. Unfortunately, that did not work. Within about 6-8 months I was suicidal. Then came the anger. My hormone changes almost did me in. So, I do understand a bit about those things. I took HRT for a time. It was when it was all over the news about testing being stopped due to estrogen related cardiac issues. I was off, I was on, and then off again.
I also can relate to the sex problems. Mine a bit different but outcome similar. No desire, in spite of the fact I enjoyed sex before. It is difficult to enjoy sex when I feared incont. I am alone now so that is one worry and frustration less.
I wish I had great practical advice. Best advice I can give is hug your family and let them in on your issues as much as appropriate. Sex certainly is not the only way to share with spouse. If you work go to the free counselor and share with that person. Just sharing it helps.
Hormone changes are one of the most difficult things to deal with. No one sees or understands. They see the global. You are beating cancer. They cannot see the battles it causes you daily. As for the worst decision you ever made, it was made with good input from experts. Not excusing them. Let them know what this decision has cost you. In the future they can be more educated when it comes to advsing someone else. Not that it will change you, but alt least you will know you can help the next generation of women who face this decision.
Many hugs. I hope others who have a more similar history can share more. I know you are not alone in all of this. Reading it made me re-look at the outcome of my surgery. Would I do it again? 'ell, yes. Even if I did not get HRT? Yes. I would be more informed now as to what to expect. No one told me. Thank you for sharing such a personal and obviously painful part of your life. Remember, it is only part of your life.
Jul 9, '14
Thank you so much to both of you. Knotted, thank you also for sharing your struggles post-hyst. You are so right when you mentioned the daily struggles that well-meaning people don't fully understand. I can't blame them, of course. They are happy I beat cancer, and many of the post-hyst symptoms are just too intimate for polite conversation, ya know? It is incredibly helpful that you shared, as it makes me feel less alone. Herring, your suggestion of a support group is a good one. Maybe I will try...I'm one of those that looks warily on support groups for myself, but maybe it's time.
i hope others that read this will share and not feel alone.
Jul 9, '14
I'm so sorry this happened to you. I have nothing to offer except hugs and warm thoughts. (((Dudette)))
Jul 9, '14
Of course, this hormonal therapy for women is not covered by most insurance plans in the USA.
Jul 9, '14
Quote from toomuchbaloney
Thank you for this! We're in a position to pay for it out of pocket if not covered by insurance. I will talk to my oncologist about it!
Jul 9, '14
Hugs to you (((((Dudette 10))))
Jul 9, '14
I didn't have any surgeries, but I did go through the Ten Year Menopause-From-Hell, so I do know first-hand about the crying, depression, lack of libido, etc.
I tried plant estrogens prescribed by the doctor and formulated by a Women's Pharmacy, freshly made up and mailed to me when it was time for a refill..Those worked ---sort of okay for a month or two, then the effect was negligible. So we would try a different mix, again with the same results. The progesterone, which was supposed to help made it all worse! I could tell, because within 35 minutes of taking one capsule I would feel ....well, murderous would be a mild word for it.
Finally, after having and keeping track of the hot flashes, # per day, the intensity, and the length of them and discovering I was having 45 hot flashes in a 24 hour period of time, lasting about 3.5 minutes each; the worst of them would start with a 'aura', in which I felt like I had to get out from my skin NOW, and then as if I was wrapped in aluminum foil that was being crunched and crinkled ll over the skin of my body. A creepy feeling all the way around.
I went back to the doc's saying "Fix it, Fix it, FIX IT!!!!" At that point I agreed to try pharmaceutical HRT. Not too much longer after that I heard about the gov't stopping the study of HRT. I thought, 'Wait just a damn minute! If the government actually did that, why am I still doing it?'......So I gave up cold turkey.
And boy did I ever gain weight, when I never had that problem before. I hated that I felt and looked matronly, what with 'the girls' going up 3 bra sizes and 3 cup sizes. UGH! I think that if there were a way to do so I would gladly donate my boobs to someone who wanted to be bigger and larger.
Now it is several years beyond all that and little by little I have been 'getting myself back'.I still have hot-flashes once in a while but not nearly as often nor as severely; and I do have my libido back, for all the good that does me, as hubby's BP meds and several other meds have taken his libido away!
I don't cry endlessly anymore. My metabolism laughs heartily at me when I try to lose the extra 50 lbs. So, yes I still feel that menopause took away more from me than I was willing to give up, but it's kind of moot point by now.....Winston Churchill said, "The only way out is through...." Which, while not very comforting, is true.
I guess with the help of a psychologist, and the doctor putting me on a low but effective dose of Paxil, and just plain old TIME has gotten me to a place where none of it is so debilitating anymore.
So while my circumstances are certainly not as extensive as yours, I DO understand some bit of what you are going through. I am praying for you, and hoping that as time passes, things will change for you, also, lessening the severity of things, and bringing you some inner peace.
Jul 10, '14
My Thoughts and Sincere Feelings of Empathy go out to you, Dudette. Your Tact in dealing with all of this is Admirable.
Your Husband is held in the Highest of Esteem. I only hope that I can Emulate his Lovingness should I ever have to Experience the Like.
And just my Two Cents: Have you considered talking to your Doctor about an Anti-Depressant? The Newer Ones (SSRI's, NRI's, etc.) are Virtually Side-Effect Free and the NRI might even give you a Little More Energy.
The Very Best to you, Dudette.
Jul 10, '14
As inadequate as that is.
I wanted you to know I read your post, and I shared your sorrow.
Jul 11, '14
I've been thinking about you, your Situation, and the Title of your Thread, Duddette:
"The Worst Decision I ever Made" says quite a bit. You Regret a Major Life Decision and are probably feeling a LOT of Buyer's Remorse to the Max. You may be Brow-Beating yourself for having made the wrong Decision. Those Feelings are all Normal and are to be Expected.
But Hear this: They are only your Feelings, they are not Reality. You made a Decision Based On your Knowledge and Desired Outcomes. You did the best you could at the time. You are now having to deal with an Unexpected Turn of Events. Those Turn of Events have caused a Major Upheaval in your and your Loved Ones Life.
But in the Big Picture the Important Thing is that you, Dudette, are Expending Time and Energy and Thoughts and Emotions and Persevering in order to attain an Optimal Quality of Life for yourself and your Loved Ones.
That, as I said before, is Admirable.
And again, I want to Convey the Respect that I feel for both you and your Husband.
The Very Best to you, Dudette.
Jul 11, '14
I wish I had some words of wisdom for you, Dudette, but know that I'm thinking of you and sending you (((((HUGS))))) from across the miles.