Boobie Situation Email Update April 27

Boobie update email i sent out as of April 27

"This is an update email, even though i don't feel like there is much to update about. So this is i guess a non-update update. I am sending this because even though there is not much new health related info i know some of what is going on was shared and either details were not expressed clearly or the wrong information was given out. So once again i state as clear as possible, i am being this open about my current health situation so that, that exact scenario doesn't happen.  (That being incorrect information given to others, something i don't want happening).

For those who didn't get my 1st email update about what's been going on i will add it as an attachment you can look over (as this is not an email, i already uploaded the original email to the blog, its the last post), for those who already know was going on here goes the "update" as of today.

April 2nd i went in for my breast MRI (that was ordered by a general surgeon so he'd have the images before meeting me). I had been waiting over 2 weeks since the MRI expecting a call from the surgeons office to be given an appointment as i had been told i would get one as soon as they had received my results. When i gave in and called the surgeons office i was told they hadn't yet received the MRI results as were still waiting, but gave me an appointment anyways, one that was far enough away that they thought they would for sure have the results by then. The appointment they gave me (my pre-op appointment) is may 6th. The next day i called the MRI clinic and asked about my results, they say they had already been sent weeks ago so who knows who dropped that ball, thankfully they sent the mri results again, and this time i know the surgeon has them (as of this past Tuesday April 23rd). This past Friday i was still hoping now that the surgeon had the imaging that they might contact me with a closer appointment and on that hope i put off sharing the date i currently did know with some family who i know wants to know as much as possible in case it the date changed and hoped to know everything (like if i did or did not have cancer) before the end of April so they could go on vacation knowing what the situation was. Clearly this won't be happening. 

 (this is how you look for a breast MRI)

So since the last mass email all thats really happened is i've had my MRI with and without contrast (went smoothly) and been given an appointment date of may 6th to meet my future surgeon (ended up not to be, but at this point i wrote this, this is what i understood). Somewhere in the middle of having my MRI and getting my next breast related appointment i got a copy of my biopsy report (or so i thought, turns out the reception at my family dr. doesn't know a biopsy repot with pathology vs a letter explaining the biopsy); it states  i have a papillary lesion in my left breast but beyond that it only explained how the biopsy was taken (core needle) and size (can't recall the exacts, and am not going to hunt down the photocopy right now either).

For those who want to know a little more;

"Papillary lesions are benign growths in the duct of the breast. They comprise approximately 1 to 3 percent of all lesions sampled by core needle biopsies. Certain breast lesions such as papillary lesions diagnosed as benign on core needle biopsy have cancer at surgical excision and thus should always be removed. The study shows that all papillary lesions of the breast should be surgically excised to avoid missing a cancer"

 When i know more, i will happily share more. Updates will follow my May6th appointment.

Other random tidbits:
Found someone i can get some of the post-op bras i need from :D without having to fork over $60-120 each for them YAY.

Now for my sap-fest:
 In the last Month or so I've also located someone local i can talk with about all of this who understands not only the "Boobie situation" as i like to call it, but the other side of my life, the one that doesn't just disappear because something more scary has shown up. She understands living each day in pain and not always being able to do what others can let alone what we ourselves might want to do on any given day (and by this i mean things like, go for a walk with your partner on a nice day, stand at the counter and wash dishes for a half hour, not exactly extraordinary things). I'm also very thankful for 2 other girlfriends, one i've known from grade 7 and another friend  who i've known less than a year and I am very thankful for their ability to talk me through some of my bigger meltdown days and dealing with some of the drama that apparently comes with multiple illnesses and a breast tumor haha. I'm very thankful for all the love and support i've received from my other friends and family. No matter the outcome of my future surgery i will no doubt keep needing this support so thank you for being there and understanding what i say in these updates, along with and why i a saying it all. S's been great with all of this, and i'm hopeful he will be able to be there for me when my surgery date comes, (either have the day off or can take it off) as i can no longer imagine going in that day without him beside me (this will of course depend on when they book me for surgery).

thanks again for reading this, if you are being sent this and you don't want to be getting these "updates" please simply email me back and let me know and i will make it so you won't receive these messages. (as your choosing to read this on my blog, this doesn't apply simply close the window if you dont want to read this)"

Didn't expect a Support Group to be so Great

I often mention how fantastic it is that I live in a time where I can find other women from all over the continent and even world who understand what life is like with endometriosis or with chronic pain with the use of the internet. I have found this extremely helpful for years and even more so since my endometriosis has kicked up a fuss and taken over most all parts of my life. Tonight however I learned something, as great as talking to someone online is it does not compare at all to sitting in a room filled with other woman who simply “get it”. There is absolutely no comparison.

When my dear friend Jackie mentioned to me about a support group in Toronto for endometriosis I basically shrugged it off at the start since I couldn’t see myself actually opening up or enjoying a support group. Then Jackie pushed the idea harder on me and that first month I was considering it I was not able to travel out to Toronto in order to be there Thursday night since I had myself on the books to be doing reception at the resource center the next morning. This month however I made it so I could attend the group and it was so very worth it.

When I get back in town I hope to talk to the person who I “work” for on Friday afternoons every week to arrange either changing the day I volunteer each week or for the 2nd week of every month in order to be able to continue going to the support group meetings because tonight was such a breath of fresh air and some venting about certain doctors in our lives.

I unlike a fair number of people with endometriosis or even chronic pain had someone who understands since day one right in my life and in my home. My mother started pushing the doctors to get answers as the 2nd period of my life crippled me and left me lying on the floor in the bathroom in tears at the age of 14. For years she would tell me she thought I had endometriosis and I told her I thought it was only bad periods, since I didn’t want to have something “wrong” with me or be “sick”. As time went on my periods got worse and worse to the point they scared me, and it scared my mother to so without answers we tried treatments. She had endometriosis as a young woman and continued to have issues with the horrible pain until I was 3years old and she at that time had an ooferectomy. Growing up she understood the pain and also knew enough about what treatments would be in my future. In fact because of this I had tried 5 different birth control pills and Depo-Provera before I had even been diagnosed, in fact I had been on 4 of those birth control pills before I became sexually active. She was right there with me when I was in too much pain to be able to stand let alone walk, or when I was in the hospital for 24hours hooked up to IV and getting morphine hourly along with ultrasounds with them trying to figure out what was “wrong”. The only issue with having someone who has had endometriosis being so close in your life is if they had one specific thing that helped, they tend to look at that thing as the holy grail even if it has no guarantee and is not reversible (like an ooferectomy).

The pushing me to have an ooferectomy since the age of 18 aside, having a mother or anyone actually to be your stand by is very helpful. She still is with me for most all doctor appointments for a few reasons,

1) I can’t drive so for some of them it’s simply because she can give me a ride or even if I could get to the place by transit there are times where I am in too much pain to get places without being dropped off right at the door.

2) She is a second set of eyes and ears and often brain to remember what the doctor’s say, do and also to come up with questions to ask them.

3) When doctors tell me it’s in my head or there’s nothing wrong, I can’t often be as strong as I would like to and can end up balling while she can be strong and push for the right tests. She can be overly pushy for tests at times to but that is just something I have to accept with everything else she is willing to offer.


Having a family member I can talk to about this is helpful, as I said I always found random strangers over the internet to often be more helpful to talk to though since there was less judgment or at least if there was judgement it didn’t affect me. As helpful as talking to internet friends though however I now know it does not compare in the slightest to sitting with a bunch of other women who have done the same treatments, had the same pain, been told the same things and just get it. Seeing the connections and differences between our symptoms was interesting and also informative and from the whole thing I got the name of some doctors I might try to get referred to.
I would love to thank Jackie for pushing me to go to this support group in Toronto. The person who runs the support group and all the women who attended were amazing and thank you for having this group and for having me. For those who might read this and are within traveling distance to Toronto its worth going to this support group. Meetings are the second Thursday of almost every month in a building that woman’s college hospital owns.

T.E.N.T. or The Endometriosis Network of Toronto has a face book group and must likely also have info online on the website for woman’s college (since I am guessing that’s where Jackie found info about it) if one were to Google the name.