Update: That Other Shoe That Dropped

June 2013 brought me the "thud",  the "other shoe that dropped"......for those of you who have not seen my that July 21, 2013 post, it was all about the surgery I needed due to Tamoxifen side effects.
The short re-cap goes like this:
June 28, 2013, I had surgery to remove my left ovary and left fallopian tube (with the caveat that if anything biopsied during this surgery was cancerous, I would have a complete hysterectomy).  I woke up with the left ovary, left fallopian and the right fallopian tube gone. Thankfully I had managed to hold on to my right ovary and uterus because there was no cancer found in the biopsies that were done during the surgery.

Two weeks after the surgery, I had the typical surgical follow-up appointment and then six months later I had a regular gyn exam with all the usual tests. During this six-month appointment, I mentioned to my obgyn that I was having pain (which ranged from short and tolerable to sharp, shooting and repeating pain) on my right side in the ovary zone.
Now, as you can imagine, I keep notes - with dates, details, descriptions -  as I am now even more sensitive to whatever it is that I perceive as a change in my body....or something that just does not seem right. 
My obgyn heard all my concerns and notes and recommended a "date with the ultrasound wand".

On February 24, 2014, I went back to the hospital radiology department (a place I already felt I was too familiar with) for the internal vaginal ultrasound. So there I was, clothes on my top half, paper "blanket" on my bottom half and my fabulous patterned knee-socks as I lay there in a rather vulnerable position. I was nervous and switched between moments of concentrated quiet breathing to talking incessantly to the radiology tech. The tech was doing her job and I was watching her face like it was a poker tournament and she had a tell and a pile of poker chips.

In my head I started a silent chant...."save the right ovary, the only ovary, save the right ovary, the only ovary". Oh, and in case you were wondering, it is very difficult to relax and let someone insert that ultrasound wand and do their job. After it was over, the waiting game began - there is this part of you that wants to know the answer/result, but there is also that part that would rather not know the findings.

A couple of days later I learned that the right ovary had a cyst and that at this point it appeared to be a typical cyst that would resolve on its own. I was told to keep tracking any pain that I felt and that I'd need another date with the ultrasound wand in six months. Then my obgyn says that if the pain changes, continues or is not in line with "girl math" (aka  the halfway point of my period), I will need to have another ultrasound sooner than the six-month date.

I am sure that there are people out there that would have said "take it all" on the June 2013 surgery date and just be done with it, but I am not one of those people. I know there is a chance that I could end up having surgery again and having the right ovary removed, but it is just a guess...a chance...a possibility.

The one thing I am sure of - the one thing that has not let me down yet - is trusting in my body and doing what I believe is right for me.

If I had followed the typical course of treatment/ recommendations:
1.  I would have had chemotherapy after my breast cancer surgery (on the off chance that a 3mm spot in one of three lymph nodes biopsied had shot cancer cells out into my body somewhere) in conjunction with the radiation therapy that I did have.

2.  Instead of just having both fallopian tubes and my left ovary removed,  I would have had a complete hysterectomy. The complete hysterectomy, per the Drs, would lessen my chances of ovarian and uterine cancers and would allow me to take the post-menopausal breast cancer drug without having to have shots to put my body into menopause (because the pre-menopausal breast cancer drug - Tamoxifen- had too many side effects for my body which actually caused the need for the surgery to remove my left ovary and fallopian tubes in the first place --oh, and don't forget that I am unable to take hormone replacement therapy because I had estrogen receptor positive breast cancer)

I truly shudder to think where I could be and what condition I may be in,  if I had blindly taken the "typical routes" recommended to me.
I did my research and I trusted my body - I trusted how I felt and what I felt.
Because I made these choices, I still have a monthly period, I do not have a hormone replacement issues and most importantly, I still feel whole.
 

"THUD"....the sound of the other shoe that dropped

I was hoping there would be no other news flashes, changes or "shoe dropping", but it  happened. On June 5, 2013 I had my follow up pelvic ultrasound (aka my "date with the ultrasound wand" as I call it).
That ultrasound led to many doctor appointments over the next several weeks and then surgery.

Although the majority of the Tamoxifen "accessories" I had gained during my 8 months of taking that drug had resolved, the left ovary was not returning to normal and that complex cyst was still there. The right ovary was fine and other things looked more normal, but the left ovary was very concerning. My ob/gyn recommended that I have surgery to remove the left ovary, left fallopian tube and biopsy the uterine lining to make certain that cancer was not lurking.

Needless to say, I was scared! My ob/gyn was calmly explaining the procedure, what would happen, etc and all I could hear was Charlie Brown's teacher's voice. The word cancer was on repeat in my head like a bad musac track from an elevator.
I went home and started a pity party for myself that lasted several days and included lots of crying, fear, anxiety and questions: "why me?", "what did I do to deserve this?" and "whose going to want me with no girl parts left and all the side effects that brings?".

We set the surgery date for June 28, 2013 and I prepared myself for the worst, but was praying and hoping for the best. I would have laparoscopic surgery under general anesthesia. The left ovary and left f tube would be removed, the uterine lining would be biopsied and all of that would have quick pathology done. IF any of those came back with cancer, then I'd have a complete hysterectomy (all my "girl parts" would be taken away). I agreed that I didn't want two surgeries so I signed paperwork that clearly stated to go ahead and do a total hysterectomy if there was cancer found.
Why wake up, hear the cancer word and then have to set another surgery date? No way. I decided to make it a "surprise" - which means I would not know if I had any "girl parts" left or another cancer diagnosis until I woke up in the recovery room.

Now this plan was finalized as far as I was concerned, but I was mistaken. There was one more decision I would have to make. I met with the gyn onc to review and discuss what would happen if cancer was found during my laparoscopic procedure. The gyn onc would be the one to step in and take the the procedure from three holes in my stomach to cutting me open and taking out everything and doing the staging (aka biopsying other bits and pieces in the surrounding areas to make sure cancer was not lurking somewhere else).
I was now hit with the new decision: if cancer was not found, why not go ahead and take out both ovaries and f tubes since I was already there under anesthesia and all?

This is where I began to fall apart - again. I had pulled myself back together (well, as much as I could) after agreeing to surgery and the original two options. Now, I had yet another decision to make: if there is no cancer found and hysterectomy is not needed, do I still give them both ovaries and fallopian tubes? In other words, do I say "yes" to surgical menopause without a cancer diagnosis?

The gyn onc explained, as my breast onc had previously explained, that not having ovaries could reduce my chances of a recurrence of breast cancer (I had estrogen receptor positive breast cancer). I'm not crazy, I had already said take out all the "girls parts" right then and there if cancer was found during the surgery.....but did I want to agree to give them parts that didn't have to come out?
It was being presented as a good news option......Hey, if you let us take both ovaries then you can start taking the post-menopausal breast cancer drug without having to take the shots to put your body into menopause....
I failed to see the "good news" aspect of this presentation. I had a lot of thinking to do and a huge decision to make in a matter of days.

I said NO to the extra donation to medical waste. I was determined to keep the right ovary and right f tube if there was no cancer! My gyn supported my decision (she is an amazing person and care provider by the way!). This way, I could consider taking the shots to throw myself into menopause and take the post-menopausal breast cancer drug. If the side effects from this drug were horrendous, I could stop the the shots and kind of come out of the menopausal state.  If I gave them both ovaries, there would be no turning back from a menopausal state. My age also played a part in this discussion - there was a chance that even if I stopped the shots, I wouldn't bounce back.

So here's what happened on my surgery date, June 28, 2013:
I woke up with some girl parts left, but not as many as I had hoped. My left ovary and f tube were removed as planned, but the right f tube looked suspicious so it was taken out too. I was able to keep my right ovary and uterus. Good news - no cancer found!

In case you need a quick biology reminder, no I cannot ever get pregnant now. Even though I knew that getting pregnant and having a child was probably not in my future, it was still possible - biologically possible, it could happen. Now, it cannot happen. This news was tough to digest. It was more difficult and upsetting than I had imaged. It is very difficult to go from "it probably want happen for me" to "it cannot and will not happen".

I am still recovering from the laparoscopic surgery (takes 4-6 weeks to regain 75% of your strength). The recovery has been more challenging than I expected. I grossly under estimated the healing and recovery time. I was comparing it to my breast cancer surgery - not a fair comparison by any means. I'm working back up to my 2 mile walks, morning yoga and ab workouts and I will get there.

Yeah, I'll get there.....I'll get there with my new normal, with decisions about future breast cancer drugs and moving forward with my life. Not having another cancer diagnosis is a major relief, but I still have to somehow wrap my head around what has happened to my body and come to terms with that.

Two years ago this month, I was happy that I had completed breast cancer surgery and my radiation treatments before my birthday. That was my goal two years ago - to have it all "finished" before my 2011 birthday.
Never thought I'd be here again. Never thought I'd be facing another "get well" goal before another birthday, but here I am.

My Body, My Science Project

First, I must apologize for taking so long to give follow up information.....but, here we go...

August 15, 2012
This is the day that I went back for another internal ultrasound (or as I liked to call it a "date with an ultrasound wand") and as an extra bit of fun, I got to have a biopsy to make sure that none of my "accessories" were leaning to/ or were cancer.

The good news is that the biggest cyst was gone as well as the other "cyst friends" on each ovary. There were also no polyps or abnormalities seen this time. My endometrian lining had decreased from 18mm to 6mm. My right ovary was now listed as "normal" and my left ovary had reduced in size (heading toward normal). The most important news was: no signs of cancer... and I wouldn't need another "date" with the ultrasound wand for 6 months.
Obviously I was very excited and relieved by this news! The gamble had paid off!

The gamble you ask?
Tamoxifen vs No Tamoxifen, that was the gamble. All these new "accessories" in my uterus and ovaries had appeared during the 8 months I was taking Tamoxifen.
(details in previous post: "Less is More: Tamoxifen 'accessories'" --- the link is below)
http://elizabethssoapbox.blogspot.com/2012/07/less-is-more-tamoxifen-accessories.html

Some people would say put up with these side effects because it could likely keep me from getting cancer again. Some other people might say that the side effects were too great - not balanced with quality of life.
My oncologist is trying to get me on the other breast cancer drug (that would require shots to put me in early menopause so I could take that drug) and I have said NO. Would you agree to that?

Maybe I am one of those people that have extreme side effects to medications. Maybe other people take Tamoxifen with no problems (other than the usual side effects: hot flashes, night sweats, weight gain, bone density issues, possible vision problems). Whatever the case may be, I stopped Tamoxifen after 8 months. The side effects were more than I bargained for and the phrase "quality of life" means a lot to me.

As I always say, my decisions are not for everyone and no one should make decisions about Tamoxifen based on what I write.
I do know what is right for me  - my body became my science project - and my gamble paid off.

Less is More: Tamoxifen "accessories"

I jokingly call the the new things I have acquired "accessories". The new things I have gained came out of nowhere over the last 8 months. I didn't ask for these accessories nor do I want them.

I started taking Tamoxifen in August 2011. I got "lucky" at first and didn't have the weight gain and hot flashes that some people do. What I didn't know is that my normal/ typical uterus and ovaries were becoming an internal farm over those 8 months. At first it was only irregular periods, but they never got regular - that's when my gyn stepped in and set me up for a pelvic ultrasound.

If you never had a pelvic ultrasound, invasive is putting it mildly......you could say I am dating an ultrasound wand at this point. I "get" to have these dates every 6-8 weeks to see how the accessories are doing and if there are any new additions.  At first, there was only 1 cyst on my left ovary and an 8mm thickening of the endometrial lining. At my next "date" this one cyst had become 2/complex cysts, the left ovary was enlarged and there was a new cyst on the right ovary.
Clearly, this was not going to resolve itself as my gyn, and I, had hoped. 

At the following "date" night, I learned that more accessories had been added to my collection. I now had the 3 cysts (still there and slightly increased in size), an additional 10mm thickening of endometrial lining (for a total of 18mm), polyps and a fibroid in my uterus. 

I struggled to understand how my perfectly normal uterus and ovaries had turned into a dumping site for extra pieces and parts. I didn't have these things before I started Tamoxifen in August 2011, but there I was in June 2012 over accessorized.

In fashion, we are told to stop and take off one piece of jewelry before we leave our homes - because less is more. In my case, removing an accessory wouldn't be that easy. 

I ask for all the options. I was given the "wait and see" approach, possible surgery (loss of both ovaries) to remove the cyst if they became too painful and changing breast cancer drugs (requires shots to throw my body into early menopause so I could take the post-menopausal drug). Obviously, none of these were very exciting. 

After some serious soul searching, praying and ice cream, I decided to stop taking Tamoxifen. I told my onc and gyn about my decision - they were sort-of ok with this. My onc wanted me to say "hold off" on Tamoxifen as opposed to "stopping" Tamoxifen. I will still have my regular follow up appointment with my onc in October 2012 and we'll talk about this more.  
(side note: I am so happy that I have a great team at the hospital. They are supportive of my concerns, ideas, questions, etc. I'm sure they figured out early on that I was not a "follow standard protocol without a million questions" kind of girl) 

The last day I took Tamoxifen was June 28, 2012 and as of today, July 21, 2012, I feel good. I no longer have pain in my ovaries (one day one side, next few days the other side), no longer have spotting everyday (pantiliners should never become your best friend) and all that bloating in my abdomen is decreasing.
My hope is that on my next date with the ultrasound wand, there will be no new accessories and possibly some shrinkage of the current ones.

I'm not sure what the future holds but I do know that I am comfortable with my decisions. My choices are not for everyone - and should not be for everyone.
I also know that I am tired of "dating" an ultrasound wand.

187 Days Down and 1638 More To Go

Yes, the tamoxifen countdown continues - I'll eventually get to 5 years. I promised in a previous blog to give updates on my "tamoxifen journey" so here's the latest:

I had managed to squeak by those first 25 days with little to no side effects, but that has changed.

Single..good or bad thing? Who can say at this point?
If you were in a relationship when you started tamoxifen and then starting having night sweats would that be easier for your partner to understand?
If you were single when you started tamoxifen, how do you tell someone "oh by the way, I may or may not wake up drenched in sweat and I hope you are OK with that"?

I was single at diagnosis and I am still single and I do not have answers for these questions. I keep getting information from "agencies" that want to help with the post-surgery getting on with your life stuff...and they keep including topics about sex, dating, relationships, etc. I have not attended. I'm not sure that some person leading a group can tell me how to address my scars, my one boob that feels like an implant and the tamoxifen side effects to a person I may become involved with/ start a relationship. Yes, I can hear the comments already, "well, if they truly care about you none of this will matter". Well, how the hell do you know that?

I did not have hot flashes. I did not gain weight. I did not have night sweats until the last few months. There is also this weird "sonar ping" like thing that happens in my calves. I've seen my oncologist, general physician and had an ultrasound of both legs, but there is nothing wrong. I know that these weird sensations did not start until I was taking tamoxifen. I am learning to live with it - it doesn't hurt, it's just strange. I have figured out that I need to keep calcium, potassium and sodium levels "high" to help this sensation from occurring as often (note: "high levels" to me, may be very bad for someone else - I've always needed to add salt to things to keep the level right).

Is there anything worse than going back to "teenage periods"  - when the length of time between periods varies, one time heavy, next time not, maybe spotting only, cramps....
No, this part has not amused me. I keep hoping that my body will adjust and things will get into a pattern, but until then I must go with the flow so to speak.

If taking tamoxifen everyday for 5 years will lessen or stop my chances of developing another breast cancer, I'm all for it. I'll keep taking that pill everyday and be thankful that I can.

25 Days Down and 1800 More To Go

My Tamoxifen countdown clock started initially to wait for possible side effects. My oncologist told me that if I did not experience side effects/symptoms within the first two weeks of starting the medication, I was unlikely to have them at all.

I think I made it through the two weeks OK. I did not gain any weight, but I was mindful of diet and exercise (and continue to be so). I'm not sure if I had a hot flash or not...it was hard to tell in the heat of the summer. Was I hot  all of the sudden because I carried three bags of groceries up my 43 stairs or was I having a hot flash? Was I hot  all of the sudden because I was at work and lifted things or was I having a hot flash? Could it be that it was psychosomatic? I think the answer to this question can be found in the coming winter months.

I haven't had any unusual joint or bone pains which I have read about in other blogs and websites; however, I do see a chiropractor regularly. Maybe having my spine checked, adjusted and completing the PT exercises assigned by the chiropractor are keeping them at bay. Maybe I haven't been on Tamoxifen long enough for the bone and joint pain to start. The answer to this question may take 365 days longer to find.

No, I haven't been rushed into menopause - not yet anyway. My oncologist said that Tamoxifen can change my periods. She said that I could stop having them, but still be ovulating. Is that such a bad side effect? Yes, my period was earlier and different than normal but will that happen again? (If this is too much personal info, sorry, but I made a decision to tell it all).

There is a lot of articles and blogs out there about Tamoxifen - good, bad and the ugly.
This is just my experience of the first 25 days with Tamoxifen.
I'll keep the countdown going and share the details.