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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Wednesday, May 29, 2013

Two more Appointments Known

Appointments are coming together

Yesterday I got a phone call from my general surgeon’s office about when I will go through pre-op questions, hand in my pre-op questionnaire, have an exam and blood work taken at the hospital Guelph hospital. Wednesday June 5th I will be meeting an unspecified nurse to go over all the pre-op paperwork and also so she can any questions I might still have. That said I plan on writing up a letter to fax Dr. Mylene Ward’s of questions I have thought of since leaving the office last Friday as she told me whatever questions I think of after leaving the office she would answer no problem.

Then on June 7th I will be meeting the anesthesiologist who will be the one putting me under for my lumpectomy. With the medications I take on a regular basis it was concluded that I should at least get the opportunity to talk it over with the anesthesiologist as he should know before the day of surgery what I’m on, and be able to make suggestions if necessary. This should also prevent the possibility of arriving for surgery only to be told I can’t be put under general anesthesia due to this medication or that, as that would be a total piss off.

Now as it stands the only appointment I am still waiting for is the Wire localization and that I already know is happening the morning of surgery I just don’t know exactly what time. When I know the time of the wire localization procedure I will know what time I have to head to the Guelph general hospital the day I’m having my lumpectomy or more specifically “
Left Breast excisional biopsy with preoperative wire localization”

Sunday, May 26, 2013

Boobie- situation May 24th

This update i wrote after getting home from the most recent surgeon (and the next morning), later i will go back and write an actual post about each surgeon apt in more in depth if only so others can know that if your truly uncomfortable because of a surgeon or the idea of them cutting you open terrifies you because of them (and not the idea of surgery itself) its worth being stuburn about seeing someone else. Might not always work but i am currently very glad i stuck with my feelings and thoughts.

                   "Boobie- situation update as of May 24th

Today I met a third general surgeon (or 4th doctor) in 3weeks. What a month, well last few months being told I have a lump, found by a total fluke and oh by the way you might have cancer in addition to everything else. My coping skills with any stressors have sort-of disappeared and because of the level of anxiety it seems some of my medications for other health issues have quit working of course leaving me more uncomfortable and on edge, but with where things are now I am hoping I can get back to at least a reasonable level of managing life again.

found a surgeon I like, and who is able to do the surgery, surgery is booked. Will have tumor removed at Guelph general hospital June 14th.

1st surgeon (out of Kitchener) as I said in last message left me more confused, unsure and scared (and also made it clear that he had no concern or care about how surgery would leave me looking as he “knows many women with breast cancer and none of them care how they look, they are all just very happy to be alive”), my issue with that quote is from the women I know it’s wrong, second we don’t even know if I have cancer yet so a 3-5” scar across the top would leave me upset, extra if I know it’s possible to be avoided. There were other issues with him but the one that I think might bring the best understanding is that reading size 12font with glasses on seemed impossible for him. I left the appointment of meeting this dr. in tears as I had no idea how tricky it might be to try to see another surgeon. All in all I did not want that dr cutting on me. 


Grand River Hospital Kitchener

Luckily my family dr. had no issue giving me another referral once I stated I was uncomfortable with the first surgeon. My discomfort was enough for him without logical reasons to back it up.



 Groves Memorial Hospital Fergus


 2nd surgeon (from Fergus) I really liked. She couldn’t do the surgery however, or at least not in the best way. Due to my situation* for surgery they need a wire-localization done before I go in the OR and with the Fergus hospital smaller than most, they don’t have the equipment. She could do surgery on my but would have to do so blindly, cut out more and hope for the best. Doing so means she would do her best but without a way to get visuals in the OR or have it marked for her she could miss part or all of the tumour and I’d have to have a 2nd surgery. For this reason she said although she could do the surgery it wasn’t good patient care when other doctors could do it with better odds of doing it right, she said she’s refer me to one of 2 surgeons in Guelph that she liked and sent women in my situation to. That said I was still debating if I’d go with her as she made me feel much more relaxed about everything and in charge of the situation. 


Guelph General Hospital

3r surgeon (from Guelph) I met yesterday afternoon. Not only does she make me feel relaxed, normal and such I feel confident she will do surgery well and she is the one who brought up the *idea* of trying to make it so hopefully I won`t look much different after the surgery, and discussed how she would go about that. She also was the first person to take into consideration the medications I’m on and conclude I should perhaps talk to the anesthesiologist so they understand what I’m on and a better plan can be worked out. Surgery with her has been booked.

So this is the timetable:

1.       ________ (will learn apt date/time next week) Will meet with the anesthesiologist who will be in my surgery at Guelph G.H. to go over my medications, what I should or shouldn’t take the day or the week of surgery (as some of my medications are in patch form).

2.      ________ (will learn apt date/time next week) Pre-op clinic appointment. Will have blood work done, oxygen levels taken, height/weight/pulse, and other questions asked. I will be told how to prepare for surgery, what to expect and discharge plan.

3.      June 14th  ____ (morning don’t k now time yet) Will go to Guelph General Hospital to have my wire localization procedure done by radiologist. If unsure what this is and care to know more:







4.      June 14th 10:15am have to be in Guelph general Day-surgery wing for prepping to start

5.      June 14th  12:15pm Left Breast excisional biopsy with preoperative wire localization surgery will begin. Basically it’s a lumpectomy but as the tumor their excising still needs farther studying to know if I have cancer or not it’s called an excisional biopsy. The surgery should take under 60minutes. The incision will try to be hidden as best as possible, if it is possible in order to conserve my present appearance. After surgery I will be moved to recovery where I will wake up, and after I am alert enough to leave, and able regain control over my body parts that might have been impaired due to aspects of surgery I will be sent home. S will be at the hospital for much of the day and will be bringing me back home that afternoon or evening as long as all goes to plan. If anyone wants to reach us he will likely be playing on his cellphone whenever possible to kill time, and unless for some reason we get home really late or something unexpected happens he will likely be checking his email/Facebook when home that evening, and possibly mine.


6.      June 27th Post-op appointment to see how I am healing and such IF pathology on my tumor is back at this point this is also where I will learn what the tumor was and if cancer/malignant what will happen next as that would possibly mean more surgery. If pathology is not yet back than I guess I wait till it is and learn the results from my family dr. perhaps.

* my situation is not only is my tumor not very large so hard to locate for others by touch who don’t feel pain once they locate it, I also have fibrocystic breasts so it is not the only lump they can feel the last to surgeons both agree it’s in the midst of 3-5 lumps they can feel, some larger that the tumor that their concerned about. This also allows them to understand why at 19, and again at 26 (and would have between if I had a local family dr.) I’ve gone for breast imaging as self-breast exams for me are next to useless as I’ve always been able to find something it is just a matter of will it go away in a day, week, or few months. The tumor they are worried about I’d felt before and that left me feeling like I should have let them know sooner, but heck there are 3other lumps I’ve been able to find for the past 6months too depending on when I do a self-exam and none of them are anything to worry about so I can’t report every bump I find or I’d never leave the dr’s office.

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)"

Original "Boobie Situation" Notification email

Trying to catch this blog up with what has been happening, the info is unlikely to come out in a smooth timeline but i will add dates and such. The issue is most of the time i was unwilling to write as things happened, other times i wrote about things right after but saved the wording without posting, so trying to get it uploaded now the best i can now that i am in a better place emotionally that i have been for the past 3months almost.

This is the email i wrote out ahead of time but sent out the same day my parents and Grandma learned about what i knew as of that moment. Original Email from March 30th 2013

<-- mammogram="" span="">

"Hello everyone, sending this to all I can that might otherwise hear this from someone else so may as well hear it from me, or to those who might care. For those of you who have been wondering what has been going on with me and why I am stressing well this is it.

This march I had breast cancer screening in the form of a mammogram for the first time in years simply as with my family history, medical history and lack of nursing a baby I am considered "high risk"
(add in self exams are next to usless for me imaging is the only real way for me to tell whats going on).  Shortly after my first appointment I was called back for further diagnostic imaging under the story line that "the first set of images weren't very clear", sure okay I didn't question that. When I came back for the 2nd set of mammogram films and later that same day an ultrasound I quickly clued in they were only looking at one side of my chest. By the end of the ultrasound it was very clear they found a lump, a lump that hurt and I could locate on my own now knowing where it was. They also informed me at the end of the ultrasound that I would need a biopsy. (i had felt this lump in the past, but i had felt 3 others recently too so thought nothing of it really as i can always find lumps due to fibrocystic breast)

Breast Ultrasound ---->

 Couple weeks later I had a core needle biopsy and began the dreaded wait for results, being hopeful the results would come in exactly a week later I booked an appointment ahead of time with my family dr., and to my surprise the results were already there, well somewhat. The dr. wouldn't go into much detail about what was found to be honest, I was told at best the tumor is pre-cancerous, at worst its cancer. They also said my file had been sent on to a surgeon who I was being referred to who would perform a lumpectomy on me and from there they would do farther testing once they had the tumor out. The doctor also told me as it stands the statistics I'm looking at are 60%cancer. 

< --- Core needle Biopsy guided by Ultrasound

What it sounds like after thinking about exactly what he did and didn't say to me is that the biopsy perhaps showed both pre-cancerous and cancerous tissue but unlike my dad's throat cancer scare a few years ago they don't want to tell me and get me all scared that there is cancer based on one cell found and then later go in only to discover there only was the one small spot of cancer and they managed to get it all in the biopsy.  Who knows for sure and I won't until after I have surgery. 

My plan was to keep everything to myself (and S and a few very close friends so I didn't go nuts) until I knew if I had cancer or not, that said I also figured I'd have that answer when the biopsy results came in and that I wouldn't be going through more testing and surgery before learning any more.

They already have a rushed appointment for my MRI scheduled this Tuesday (April 2, 2013) , and once the MRI results are in my future surgeons hands I have been told I will be getting an appointment and given my date for surgery. 

So no matter what I am having surgery, if no cancer s found than that's the end of it as far as I understand (besides continual screening) if cancer is found I might have to have more surgery to make sure they got every cell and chemo or radiation or both to treat me. As it stands I have no idea what will happen but as I am 26 with a sore tumor and know I will be having surgery on my breast it's a little frustrating to say the least (and when you add in my other health issues I seem to become a statistical anomaly how can i find myself with a breast tumor even if its "safe" endometriosis, IC and Fibro issues at times all before my 30th birthday it just seems wrong).

From this point I will be much more public about what is going on and trying to keep those who want to know up to date, although I wanted to talk to many people I had to keep it to myself until both S's parents and sister/my parents and my grandma Joan all knew first. Was not allowing the chance of any of them to hear it from someone else or hear something incorrect,  as if any of them heard it from someone else rather than me it would make the situation that much harder for me to explain, and for me sharing this information is what makes me feel more open about it and also gives me the ability to talk about that is going on and de-stress about it. Not going to lie I am hoping it's not cancer but time will tell.

For those of you who were questioning what was going on and thought I was pregnant, no that is not the case at all and should never be the case haha.

If you want to be one to be kept in the loop please make that clear and with what email to message updates at.

Thanks for reading. If you have any specific questions i will do my best to answer."