Heard back - Kind of..

So I know I said I wasn't really expecting to hear back anything from my ovarian cancer screening.  But I had actually come to expect a call to just say "your results came back normal and your cyst is nothing to worry about it."  So when almost a week later I hadn't heard anything, I started running crazy scenarios through my head (I am prone to this...) like WHAT IF there was something to tell me and all of the doctors who got the report thought another doctor was going to call me, and no one called me and I'm losing precious time to be doing something...

So yesterday I called to check and left a message with the doctor's nurse.  Still hadn't heard back by this afternoon, so I called again and spoke with the nurse who apologized and said it is now on the doctors computer for her to review, but she went ahead and told me that my CA125 was fine.  I asked for the number and she said it was 13.  Under 35 is considered normal.  So thats good!  She also said I "have a TINY (???) cyst on my right ovary and that is normal".  So if the doctor has anything more to tell me, she'll give me a call, but "looks good!"

Side note... I got my annual pap test result in the mail.  Check it out.  Seriously.. I can't imagine getting this in the mail with the box next to "Abnormal" checked.  Would I then have some questions or concerns? YA I think so!!  I sure hope I'd get those results in some way other than a check box in the mail. 

Ovarian Cancer Screening

So I had my first ovarian cancer screening on thursday.  It consisted of a blood draw and pelvic ultrasound.

I think it's sign that I've spent way too much time at the hospital when the phlebotomist passes me in the hall and says "Hey, haven't seen you in awhile".  Then when I'm back getting my blood drawn he says "I know you from somewhere other than here don't I?"..... No.  This is it.  I've just had my blood drawn by YOU like 10 time times in the last 6 months.  The last time I was in, he asked me if I worked that the hospital, because he was just sure he saw me regularly outside of drawing my blood.

So the blood draw this time is for a CA-125 test.  Which from my understanding CA stands for Cancer Antigen and this particular one is found in higher concentrations when ovarian cancer is present..  So a low number is good here.  When/If I found out the number I'll post again on that.

The ultrasound was pretty much torture.  They told me I had to drink 32 oz of water between 10 and 1030.  So I did, and at 10:30 I didn't think that was too bad, but then at 11:30 when I showed up for my appointment, and had to wait for the phlebotomist and then had to wait for the ultrasound, I was very anxious to get to go to the bathroom.  Then I was called back for ultrasound, and she started with the external which was pushing on my stomach for about 30 minutes.  She had a hard time finding my left ovary, so she was pushing really hard!  it was not pleasant.

Finally she finished with the external and then told me for the internal one I needed my bladder as empty as possible.  (must it really be so extreme??) so she said I should go to the bathroom, then walk around a few minutes, then go again.  SO I did as she suggested and she insisted on a quick external  ultrasound again to ensure I was empty enough.  I did a "good job", so we proceded with the internal ultrasound.

I'm not going to go into alot of detail on the internal ultrasound.  It is what it is.  It just went on alot longer than I anticipated.  Not looking forward to do this again in 6 months.

As she was going along and I assumed she was close to being done (which she was not) I asked if she could show me what my ovaries looked like before she finished.  And she said "okay... well let me just tell you then, you do have a large cyst on your right ovary... it's about 3 1/2 cm.. so I'll show you that and then I'll show you your left one when I get there"  (yes she hadn't even made it to the left at the time I thought she should be finished).  So atleast from the angle she showed me, we couldn't even see the ovary.  It was blocked by the cyst.  Which on the screen looked just like a big black filled circle.

She didn't go into detail about why my left ovary was so difficult to find.  I got confused and asked if it was because of the cyst, and she clarified, no it was the right that had the cyst, and it was EASY to find because of the cyst.  She showed me a picture of my left ovary and commented how they usually look like a chocolate chip cookie, and that mine is a shaped a little different than normal.  Rather than being round, mine is shaped kind of like a peanut shell.  Which I don't know.. seems like from looking at pictures online anyway it's pretty normal to not be exactly round...



She couldn't really tell me anything because she's not the expert.  I'll just have to wait for the report from the radiologist to get to my doctor and if they feel the need to call me, they will.  I didn't get a call Friday, so I'm kind of thinking I'm in the clear.  We'll see Monday, I guess.  But I'm really thinking that a strangely shaped ovary, and even a 3 1/2 cm cyst is somewhere in the realm of normal... So I'm not really expecting a call from doctor, unless they just call to say it looks okay, or even "hey you have a cyst that we'll just see whether its still there or not in 6 months when you go through this again".

Annual mammogram is NOTHING compared to this!  I'd rather have a mammogram 4 times a year than this twice a year.  But this isn't something I get to negotiate on.  No fair trades here.   Well, oh well.. it is what it is.  I'm screening for cancer.  Hopefully it will never be an issue, and if it is, hopefully I'm doing what it takes to save my life.  Thats what this is all about.  That makes it worth it.

FORCE | Previvors & Risk Reducing Surgery

The link below is to the FORCE website ("Facing Our Risk of Cancer Empowered"), which you may hear me talk about from time to time. This link explains the term "Previvor"
FORCE Previvors & Survivors : Cancer Previvors

Here is another link - what FORCE has to say about Risk Reducing Surgery.
FORCE Publications: Newsletter: Spring 2011: Risk-reducing Surgery

As I was exploring the site, I just found that they have a Boise group! They didn't last time I checked, so I'm excited to hear about what this will mean! Maybe there will be a group of people going through what I'm going through that I can meet with and talk to in person!

Gynecologic Oncologist - say that 10 times fast.

The other day at work my coworker/friend asked me "which appointment is this" and I said "the gynecologic oncologist" and she kind of laughed and said "you're getting good at saying those words". 

Yes I am!  it's kind of a funny coincidence, a nursing school sometimes prints to a our printer and a quiz had popped out.  She picked it up and said "what is the surgical removal of the ovaries called".  and I said (without hesitation)  "oopherectomy"  and she said "hmm no I don't see that..."  and I said "no let me see" and sure enough it was there on the multiple choice selections, and I pointed it out.   Who knows that??  besides medical professionals and those who have had the procedure done or are considering it.

So I had my appointment with the gynecologic oncologist on Wednesday.  Let me tell you.. I don't like annual exams!  This doctor though was very calm and actually showed me the "tools" which I've never actually seen before... I told her so, and she said she believes in her patients knowing what it is that she's doing to them.  Yes.... I suppose that is preferable.

Anyway, prior to the actual exam, we had a long discussion.. My husband was there.  I really wanted him to hear the information from the doctor.  It seems like that was helpful when he went to see the surgeons with me.  He didn't go with to the initial high risk clinic visit, not that he didn't want to, but I think more because I downplayed it and didn't place the importance of it higher over his work, and said my mom could go, which she did, and that was good, but in retrospect it would have been good for him to hear what the surgeon and oncologist had to say at my first clinic visit.  that's really the basis of information on what thoughts and decisions I've been developing over the past year.  Hearing it from the "experts" can be enlightening.

SO the gynecologic oncologist started out by asking what my understanding was about what this appointment was for.  I told her that my understanding was that I wanted to know more about my risk, my preventative and/or screening options, and to get an exam done.

I guess this was the right answer.  She said that she had reviewed my file, as far as the notes from the oncologist, my genetic results, and the notes from the original referring doctor.  She said that in some of the oncologists notes he had indicated I was BRCA1 positive, when in fact I'm BRCA2 positive.. so she wanted to confirm with me what it was, and said she'd send him a note to clarify. 

So she said my ovarian cancer risk is lower (with BRCA2 than BRCA1) so i have somewhere between a 12% and 27% risk of developing ovarian cancer ( which also coincides with my results report). She said the typical risk is somewhere around 1%, so best case scenario, I am more than 10 times more likely than "typical" to develop ovarian cancer.  Scary.  and "worst case" that is more than 1 in 4!  (I try not to get caught up in the numbers, but it is hard sometimes..)  I guess the real worst case is that I am the "1" in the 1 in 4.  Which we will just not let be the case! right?  SO She explained the options of having the ovaries and fallopian tubes removed vs that plus the uterus.   the relating recovery times of the surgeries, and we talked about hormone replacement options.

One of the big concerns we have about this is hormonal, will it change me?  will I become depressed?  Will I lose my sex drive entirely?  will I become a completely different person??

She indicated that she felt alot of the cognitive "changes" with the loss of hormones were more related to the continual loss of sleep due to night sweats than anything else.  She seemed to imply that if that was under control it might not be to much of a problem, as far as sex goes, she does know that can in some cases be an issue, but there is something like small amounts of additional testosterone one could take to increase libido.

Her overall recommendation (as I interpreted it) was that if I was DONE having children, It is definitely something I could/should consider doing.  Then the question would be to keep or lose the uterus?  I lean towards getting rid of it.  I'm not sure what purpose it serves other than bearing children, and If I'm not doing that - why keep it?  I've seen people comment elsewhere - "if we removed everything that at some point could hurt or kill us, we'd have nothing left".  This is true.  But if something is more likely to hurt you than it is do any good, and you have a reasonable reason and the means to remove it and it won't cause harm - why not?

I know my odds of getting ovarian cancer are far less than my odds of getting breast cancer, but the problem with ovarian cancer is that it is "sneaky".  the doctor said that surveillance hasn't been proven as an effective way to detect ovarian cancer any "earlier".  That even with regular surveillance,75-80 of the time ovarian cancer is found it is in stage 3 or 4.  That is scary!  Surveillance entails a pelvic  ultrasound and CA125 blood test every 6 months.  Seems like with regular screening like that it should be caught earlier!!  but I guess not...?

I asked her too if because my risk is lower than that of those who BRCA1 positive, is preventative surgery still recommended,  She said yes.  It is very much recommended for those 35 or older, or when one is done child bearing.  So now I have the question of when.  I really feel I don't want any more children, so am I ready to do it now? anytime?  or would I rather wait.  As much as I am convinced I don't want anymore children, how will I feel about the inability to have have any?  If I were to decide to do it sooner than later, can I do it the same time as the mastectomy?  is that too much for my body to handle?  or is it better to just do one MAJOR surgery event than 2 major surgeries separated in time by a year or two?   Hmmm

Side note - her office is in the basement of the cancer center.  in the exam room the overhead fluorescent lights were covered by painting of the sky with a flowering tree branch through it.  To bring life and light to this basement.  I think this is a nice gesture. 

For now I'm starting on surveillance.  Next week I'll have my ultrasound and blood test. and will plan to do so every 6 months until I decide to do the surgery.

Now lets see my medical schedule:

Annually:

MRI
Mammogram
Visit with high risk clinic
Pelvic Exam
PAP

Twice a Year:

Physical Breast Exam
Pelvic ultrasound
blood test

Plus who knows what with my crazy autoimmune thing... I'm just going to really concentrate on making that just go away.  Seems like I should have a little more control over my immune function than my genetics, so I'll start there.

The Doctors Talked

I got a call from the breast surgeon the day before left on vacation.  She said she talked with the rheumatologist and he said he plans to have me on plaquinil for a long time, but he feels it is such a mild immunosuppresant that he thinks we are okay to move ahead with the surgery if things are going well at my follow up appointment in July, but if the plaquinil is not working well or if it is not well tolerated, he would want to consider changing to a stronger medication.  If that were the case he would want us to get the surgery taken care of before switching the medication. 

The breast surgeon also discussed all this with the plastic surgeon and determined that if I want to move forward, they will coordinate with each other on getting some dates that will work for both of them for me to choose from.

I feel like this is good news.  Hopefully my immune system will just be normal/controlled at least long enough for me to get this taken care of!

Next week I have my appointment with the gynecologic oncologist.  Hopefully I'll get some good information about my ovaries and insight as to what that surgery would entail.