To keep or not to keep....

So if you read the previous post, I had met with my oncologist post surgery 3 weeks ago and was told they believed they removed all the cancerous tissue but she needed to meet with her pathology team to discuss results in further detail. Well they met, they discussed and I went back in to chat with my oncologist yesterday....I ended up going alone to this appointment and really not thinking much of it as we already knew the outcome and the steps ahead....Note to self, always bring another adult in tow to help balance the thought processes required with these types of appointments. You never know what curve balls they may be throwing at you...

Steps ahead remain the same with some slight tweeks....The surgery will now be done by the oncology team instead of the run of the mill gynecologist. So, as excited as I was to finally have managed to get that appointment booked with the gynecologist, it is now going to be cancelled. Honestly, one less doctor involved in my case is fine by me. Explaining and repeating is beginning to be exhausting. So what I need to do now and by next Thursday when I will go back yet again to chat with my oncologist is....to keep my ovaries or to have them removed when they will go in to remove the cervix, uterus, fallopian tubes. If you are thinking "why not? What's the big deal", well to me, it is a big deal. Menopause at 38 is not my idea of fun, ideal or the best option, or the only option for that matter. I was hoping to get some genetic testing done prior to having to make this decision but the feeling of my doctor is to not wait too long and to get this done. Also to add to the mix of things, I now have to look into the status of my kidneys. Surprise! I have a malformation of the uterus which I've known for years but one fun fact associated with this malformation is not only the interesting shape of the uterus but that you can sometimes only have one kidney, you can have two kidneys but only one functional kidney, or you could have two kidneys but one is not where it is supposed to be. So they need this information going forward. If I only have one functional kidney, that is fine and you can live out your whole life without any problems but could be interesting to say the least should it eventually chose to fail. Fun times. Fun times. That ultrasound is next Wednesday and comes with the fun of fasting for 6 hours and the appointment is mid-afternoon. My stomach, which already tends to get loud when hungry, will for sure be growling like a grizzly by 2pm.

As for the genetics testing, I had both my oncologist paging her counterpart in genetics to try and get me seen quickly, her assistant also on the phone with her colleague at CHEO Genetics to see about getting me in...so I know I am being cared for. What I was told is that I need to go ahead and start the process with or without the genetic info. Yikes.

So here are my options to consider:
Option 1 - sign consent form agreeing to have the ovaries removed with the rest of the 'kit' and be done with it. Then deal with the menopause stuff....
Option 2 - sign consent form with stipulation that they will keep one of my ovaries in, simply so I do not go into premature menopause. Then once I have genetic testing, if I have a mutation in BRCA1 and BRCA2, then go back under the knife to have the last ovary removed. (yes it's an extra surgery but the way I see it, if I do not have a mutation, then my quality of life at this point would be much better with not going through all the fun stuff associated with early menopause).
Option 3 - take a chance and postpone the whole hysterectomy until I have more genetic information. Risk here is that cancer cells begin to grow again and then who knows what repercussion that would bring. 

All this being said, I'm not looking for guidance or advice or points of view but am primarily writing this as a promise to keep you all informed on the developments in my situation. Also I am writing this down as it is helping me clear my brain and will in turn help me come to a decision that I will feel comfortable with, no matter the outcome. This is my life, my body and I don't take these decisions lightly and will make what is right for me. Might not be for you and you or you, but it is for me. I have had wonderful guidance from my team of specialist, great advice and know that I am supported in whichever decision I chose to make. The support I have had from all my friends, family, colleagues to date has been so great I can't even begin to explain. It means a lot to have you all there in whichever way you are and I thank you for that.

So...to keep or not to keep....until next week my friends.....
XOXO

And the verdict is...

In short, no radiation or chemo needed at this time, and hopefully ever. Woot woot.

The longer version is that the cancer is exactly where they anticipated it to be. It's microinvasive meaning it's at such an early stage that there is no visible tumour. They won't even stage it at this point.  I had a patch of 6 mm x 1mm of cancer tissue on one side of the cervix. The uterus is clear.  They feel confident that it was all removed by the surgery I had in April. The recommended course of action is still a full hysterectomy to be done sooner rather than later. I might get more information though when I head back to see her in 3 weeks in which she will have met with her pathology team to discuss the itty-bitty details.

The Team of Experts behind my recovery
During this time, I will be referred to the gynecologist that will be performing the hysterectomy to discuss the surgery approach as well as then booking this in. From what she was saying, it could be anytime from now until the early Fall. The oncologist team won't do the surgery themselves because in their gyne-cancer world, I am not sick enough which would result in my constantly getting bumped - which is music to my ears.  Therefore the run of the mill gynecologist will do. They are recommending me for a radical which means the whole kit and kaboodle (cervix, uterus, fallopian tubes, ovaries).

Also in the mean time, I am being referred to CHEO Genetics, once again, to get genetic testing to find out about any gene mutations that could cause other cancers such as ovarian/breast. Some of you know that a year back, I tried to get genetic testing to see if I had the gene mutation BRCA1 or BRCA2 which heightens your chances of ever developing breast cancer and ovarian cancer and because of the full family history, I was not considered at that much more of a risk than the general public of developing these types of cancers. Well, now with these developments to my own health, it is recommended to find out if a mutation is present and then we will have more information moving forward. Even with a radical hysterectomy, you could still develop cancers such as peritoneal which my mom had in the end (and is not a pleasant or positive one). So having this piece of info will be good for me to have, as well as my family/kids.
 
And eventually, I will have to be referred  to a menopausal specialist/counselor to discuss all the complications that can arise from early menopause and also any plan on treatment or hormone therapy. I don't know too much about this stuff so this will be informative. Apparently there are great options that are not hormone or drug related to helping to regulate all that side of things. Guess I will have to learn all this stuff.

So today was exhausting. It was jam-packed with information. Some of it made sense, some of it not. Above is a summary of the conversations and I think i've captured it as best I can. What stuck with me the most is NO TREATMENTS AT THIS TIME. I'm a little confused about having to see her again in three weeks once she's met with her pathology team. Not sure if it means that it could change the recommended path forward but for now I am going with what was told to me today.

The after effects
I am tired. I am overwhelmed. I am relieved. I am dazed. I am confused. I am glad today is over with. Now there are other things I will have to wait on as well as other health matters I will have to focus on, i.e. being the iron deficiency which my doctor is still confused about. I had started a course of getting iron injections but that is currently on hold. I had a first test dose, which made me very ill for a few hours, then a second test dose which did the same with the added effect of almost passing out. After a discussion with the doc and her having gotten advice from a clinical pharmacist, the passing out and extreme exhaustion is not from the iron injections. Now what! So the injections are on hold and we are now seeking options as to what could be causing me the need to sleep for 15 hours and still need to sleep more and more and more....First option is possibility of having celiac disease (gluten allergy). Blood work has been done yesterday so we shall see if this is the cause or if we scratch that off the list and move on to the next possible culprit. I am so fascinated by health and our bodies but yet am so frustrated by it. What keeps me going and being positive through this all is the great support system I have around me. I have the greatest friends and the greatest family who are there to listen to me complain, to come when I call, to bitch at me when I over do it with chores or activities that make me feel normal (i.e scrubbing my carpets clean with a small brush on my hands and knees for 4 hours straight - tee hee, oh and removing all my window screens and spraying them clean and vacuuming my blinds - oh snap, you didn't know about that one). All this to say, I am blessed. I am well surrounded. I am happy. I am loved. It could be worse. It always could. I see so many positives in this situation it's unreal. Weird, ya I know. But if you've known me for a while, you've also always known I've been somewhat weird. Come on now, couldn't well end this being all serious now could I?

Thanks for listening (reading). You guys all rock!!!!