Saturday, May 14, 2011

Here we go again...

This about sums up how I feel

 I found out Thursday I need to have more surgery this time it's the downstairs part and not the upstairs. i had an abnormal u/s back in January that I was told to retest in 3 months. Well that one turned up even more abnormal. I had the u/s on the 27th of April and the next day i personally had results in my hand. How you ask? well I tend to get very nervous having to wait for results like a normal person so since I work for a doctor, I have results sent to his office as well.( hence why I didn't go the surveillance rout for the BOOBS) They came the very next morning and so I starting googling what a "septated cyst" was. Once googling started I found scary words like BIOPSY, CANCER and REMOVAL  and started to freak out. I had to keep my cool though and didn't call the GYN since they prob had not even read the results at this point not even being 24 hours after the test....I sucked it up all weekend long and come Monday morning I was on the phone leaving a message for results. Monday passed, Tuesday came and went and then it was Wednesday....ummm why have I not heard anything yet????? What the hell! I called the office again, this time I pulled the " I am very anxious card" Working in the medical field when a patient tells me that I will personally try to speed up the process of that by messaging the Doctor that the Pt has now called 2x's And is STILL  waiting for a call. Well finally Wednesday night one of my GYN's colleges called me and said she had heard I was "very anxious about my results" And that Dr. Murphy would not be in til Thursday so she was calling to talk about the results with me. She told me she was not that worried due to the fact that it was small and that most cysts are usually benign and that she would just have me retest in 2-3 months. I said that is all well in fine but what about the fact that I have the BRCA1 gene? Doesn't that put me more at risk than a normal non mutant person? Shouldn't I just get it removed to be safe? It's been there 3 months now? Could it be cancerous???????   She said that Dr. Murphy would have to go and review the films more in depth  before answering those questions and that he could do that and call me back tomorrow after he comes back to the office.     My main issue was she could not tell me it wasn't a risk that it could be cancer...Freakout mode is about a 6 at this point. I thanked her for her time and gave her 2 phone numbers to call for Thursday and Friday and hung up the phone....the waiting game continues......Thursday I make sure I have my phone attached to me all day long, Thursday comes and goes, Friday comes and goes.....wtf!!!! Are you kidding me still no Dr. Murphy calling me to tell me everything is going to be alright. Another weekend with out real results and an explanation was on the horizon, And that's exactly what happened. Freak out mode 8.5, yeaaaah. Monday again, I am back on the phone. This time I asked the receptionist what Dr. Murphys sched was for the week and I was told he would be at a conference all week long. 


OK now my freak out mode is at a 10 they had a nurse get on the phone who told me not to worry and just to retest in 2-3 months, I again said to her the same questions I asked before and STILL cold not get an answer. Couple hours later another Partner calls me from the office who states he reviewed my u/s and agreed with the other doctor that the u/s should be repeated in 2-3 months and at that point I gave in and gave up. They were beating around the bush and I was sick of it. 2-3 months repeat u/s it is. My co workers didn't think that sounded right and told me to talk to one of OUR doctors (I work for a urologist) I pulled my boss aside who is the head urologist and just an all around awesome guy who I think the world of and said "look I don't normally bother you guys with this type of stuff but I am having a hard time accepting the fact to repeat this u/s and do nothing else. He told me I should make an appt with an oncologist for reassurance and not sit on this. I didn't listen ....I thought it was a little too way extreme. The next day he asked me if I had made an appt I said no and why I didn't' he told me he would call the Dr. himself and set up the appt for me. I said I will tell you what, If you call him and you ask him if it is necessary that I see him and he says yes then I will go a head and make the appointment. Well turns out this all happened Wednesday and The following morning at 9:40 am I was sitting at GYN Oncology being registered as a new patient. Long story short I am set up for a laprascopic exploration surgery on May 25th.  Dr. Shahin who is the oncologist said that he that it was better safe than sorry to sit on this. He needs to go into this acting like it is cancer he will try to excise the cyst but if he can not get the whole thing than he may have to remove the right ovary and fallopian tube. Luckily I will still be able to have child with one ovary and fallopian tube. He said he will do a wash to see if there is any cancer cells floating around He is cautious too due to the u/s  showed an increased amount of blood vessels on the ovary, and if there is anything suspicious he will not take the uterus and cervix after a talk in the office ( honestly it's prob nothing) but he does have to take all these precautions due to the BRCA1 gene. I should get pathology results back in 48 hours so I wont have to go the weekend with out them. I wont be able to go back to work til that following Tuesday, so again more time off which sucks but I still have some vacation left so at least I will get paid. Being BRCA positive I have opened a brand new door to all these things that "could be" I have to be prepared for anything , but again we are hoping that it is nothing but a benign cyst. The upstairs potion of me is doing good and only complaint is my boobs still aren't super soft but I'll get over it. This update has been long enough so I will leave you with that. I am due to see my breast surgeon for a 6 month check up on Tuesday and also meeting with the surgical resident and signing consents that day as well And set up an MRI too (busy freaking day). I did get some blood work done yesterday, including a CA125 .Will keep you updated as things happen. I do want to give some hugs out to my closest BRCA girls that are having a hard time with their surgeries right now. So hugs to {{{{{MICHELLE, STAR and SYLVIA}}}}}}} you ladies are all in my thoughts and hope you ll have a speedy recovery soon. 

6 comments:

Michelle said...

I honestly don't know what to say lol. I've started and restarted this a few times so I'll just say I'll definitely be praying for you! I know it's hard, but I'm definitely a firm believer in better safe than sorry and I've been blessed with doctors who feel the same way and support me in all my decisions. I hope everything goes as smooth as possible for you. You've been such an inspiration to me so thank you! I got a "catiously optimistic" report from mybplastic surgeon so I'll try to update my blog soon. ((HUGS))

The Andersons said...

It was good to read your update. I have been checking it and wondering how your recover was going. Sorry about your next adventure in the BRCA world. I honestly have to say, this all sucks. It seems like it is one thing after another, but I agree, better to be safe than sorry. Hang in there. You are young and smart. What a wonderful example you are for so many women facing these same issues. Thanks for updating us.

Rachel said...

fuuuuuuck. sometimes you gotta say it. screw the polite. i'm at a 5.0 freak out for you. glad your gut was telling you to talk to a co-worker and you can get some peace of mind or be on top of things if need be.

shitty shitty bang bang. hang it there sista. hugs through the tough times and the good.

Star said...

This has thrown me off so much. I am so sorry. I'm always thinking about you. I am so grateful I was able to follow you through our mastectomies. I posted an update of my own new adventure.

silvia said...

Oh my goodness! I didn't know that you were going through this. I'm so sorry to hear :(

Keep us updated. I hope that it all works out :)

Anonymous said...

Thank you for all the videos and blog about your journey. You have helped so many women, including me. I hope that things are working out okay. I have a BRCA 2 mutation and I had my ovaries out two years ago, but decided to wait on the breasts. If I could get the good results you did, I would probably do it, but right now I am just waiting, for a little while longer. Not sure why, just scared I guess, unsure. Anyway, I started to think about it again and found your videos today, watched them all and I just had to tell you how much they meant to me, along with your honesty and all your great information. Thank you so much, you are an angel to go to all the work and energy to let us see this very personal journey. Thank you again.....