Ottawa ladies?

Fairydragonfly

So it's official, I will be starting chemo in the next two weeks. My oncotype score was 50, with a 39% chance of recurrence in the next 9 years. So I reacted by going to my hair dresser and getting my long bob chopped into a pixie cut with one side buzzed short. Gonna lose it anyway, so why not 🤷?

Been preparing myself for this possibility over the last couple of weeks, so not surprised but still disappointed and scared.

redninrah

HI Sportymom,

Im sorry that you had to join this group. You have a journey ahead of you and you need to take each day and each step of this journey as it comes.

I can only talk from my experience. I was diagnosed in 2009 when I was 35. My youngest was not even 1 then. I had stopped breast feeding and then found the lump myself. I was clueless in the beginning and was longing to meet people who could give me answers. I joined this website and spent hours talking to people who would help me find answers and share experiences and symptoms and treatments. I honestly never felt alone after that. I felt that this site had my back! Read up on my posts, I had quite the journey in terms of reconstruction. Im left with scars all over my body and probably will never have breasts again. Im only 44 and I get a constant reminder when I look in the mirror of all the scars that remind me of my shitty journey with BC. But, then a switch inside me reminds me that im still here and in remission and im able to watch my kids grow. Yeah theres time ive balled my eyes out in the shower, but i remind myself that im truly blessed that im still around to see my family.

Despite everythign, be strong, smile, and face it like a warrior, you have this sister! Theres a lot to take in now, but once you get answers and a game plan, you will feel better. PM me any time if you want to chat. Ive been in remission now since my diagnosis, and I avoid stress, I work out 6 times a week (im a hard core fitness geek) and I will continue to fight till the end.

Sportymom

Sorry for not posting in a while. It has been quite a blur. I had my lumpectomy on July 4 along with the removel of two sentinel nodes. I really thought more would be taken but I guess those were the the main two that were "fed" from my breast. I am still awaiting my pathology report. I see the surgeon on Friday July 19 so I am guessing that I will find out then. I am trying to keep busy. My main side effect from the surgery is the numbness around the site and on the same side on the back and sometimes some wicked radiating and shock-like burning pain that I get when I move a certain way. I suppose that that is the nerve reacting to the way I am moving and being angry from being damaged

Thanks redninrah. It really helps to hear other people's experience on this journey of ours. I am still awaiting my staging and subsequent treatment so I really have no idea what to expect. You sound like a real warrior! I am still learning the ropes as to this site but will go back and look at your previous posts. I would also be happy to PM with you

Fairydragon. Good luck with your chemo. I am hoping that you are doing well and handling any side effects that you may encounter. You are in my thoughts.

Fairydragonfly

Sportymom - If you haven't already, get in touch with Breast Cancer Action Ottawa. They provide a free one year membership which includes a free assessment at Haley Rehab. They may be able to help with the nerve issues you are encountering. They did an amazing job with breaking up my scar tissue and ensuring full range of motion.

I survived my first chemo and tomorrow I see my oncologist plus I will be getting the results from my genetic testing.

redninrah

Hello ladies, so I had a failed DIEP and failed implant reconstruction. Anyways to cut a long story short, i have a nasty DIEP (tummy tuck ) scar that is thick and black and looks like dog ears at both sides of my hips. The Scar is quite high so i cant ever show my stomach whcih sux for me when im working out and wear shortts and my belly gets exposed if top rides high. I basically want a scar revision. My recon surgeon has left for toronto. I went to see Dr Zhang here and she said she could fix the scar and do fat grafting into the masectomy sight as its indented from the failed implant. I waited 5 months to get an answer from OHIP and guess what they refused my claim to have all this fixed under OHIP. This is so not fair and im thinking of contacting ministry of health to complain. I never chose to have BC and im left with nothing but scars and uglys ones at that Boo!

Sportymom

Hi Redninrah,

So sorry to hear about your troubles with OHIP; nothing should be that hard when you are going through this. I work at a place called CADTH (Canadian Agency for Drugs and Technologies in Health) and am a clinical researcher (although I am off right now) and I can tell you the Ministry of Health often contacts us to do rapid reviews on the latest research out there. They are approached ALL THE TIME for things like this. You an call or write an appeal letting them know your grievances, why you are asking for this, and how this will ultimately help your quality of life. If you can find any information out surrounding a certain procedure you would like to have happen (you can always go to PubMed) to help with this (e.g., like the fat grafting) then use that in support of your appeal.

Nobody should have to fight for the health care that we so dearly pay into with our tax dollars. If you want some hints on how to search PubMed PM me anything as I also have some other resources from my job we can do to see the evidence out there for this.

This cancer things sucks.

Wendy

redninrah

Thanks Wendy! I did dig up and found an email to contact about ohip refusal, but I got an automated email saying somone will reach out to you in 6-8 weeks. Im seeing Dr Zhang next monday and find out, the receptionist was saying if you pay for it yourself fat grafting alone is 6K then hospital fees ...etc..and in my head im thinking, no no this is all too wrong, I should not have to pay for this.

Ista

Hello

I was just cruising around and seen this. I thought I should say Hello! It’s hasn’t seen any action in a while I’m from outside of Ottawa but my MO is at the General. I start chemo in 3 days.

Rain88

Hi Ista, I am sorry you had to join this site, but I hope you will find it offers a lot of support. I didn't do chemo, so I really don't have anything to offer that way. I only wanted to wish you the best with your treatment.

redninrah

hello Ista,

I’m sorry to hear that you have BC and have to do chemo. I am over 10 years out. I had no one to turn to but this website/forum to help me initially. So let’s just say you are in good hands.
im here in KAnata. I’m also in the medical field. I have had surgery, chemo, radiation. I am still on tamoxifen. I have had DIEP surgery and implants.I am athletic, mom of 2 girls, lead a busy life. You can PM me any time. I will be happy to answer any questions. As goes with anyone on this group! We are here as sisters!

take care and stay safe.

CR246

Hi Chili! It has been a while since you wrote this, but I was very glad to find it. I hope you are doing well!

I am recently diagnosed, also in Chelsea, QC, a friend of Foreverchanged72612 who pointed me here (thank you!!!). I have seen Dr. Cote, who is sending me for MRI, bone scan and CT scan before deciding next steps - he seems pretty thorough, and he was also the surgeon who took out my gallbladder which went very well. But I have had a lot of trouble figuring out how care at the Cancer Center in Gatineau hospital works. At what point do we get assigned to a nurse navigator or other support there? Apparently I won't see an oncologist until after the surgery if at all, and it seems like I can't access the Cancer Center until then either. Diagnosis was slow, and I am partially to blame as I had a benign lump a few years ago so didn't advocate for myself very well when I found this one. Trying my best to do a better job now...

LizGirl

I'm an Ottawa gal new to this forum, looking for opinions on Dr. John Lorimer from women who had breast surgery with him. I'm newly diagnosed with DCIS in left breast, moderate to high grade. I have yet to speak with any breast specialist, I've only received the pathology report so this is very scary! The Ottawa Hospital Breast Health Center has me booked to see surgeon Dr. Lorimer. There are some terrible reviews of Dr. Lorimer online so I'd appreciate hearing more from anyone with personal experience. I imagine my decision may be between BCS (lumpectomy) + Radiation or unilateral mastectomy but as I said I have yet to talk to any specialist and I don't even know whether my diagnostic work-up is complete. I have dense breasts so mammography may not see everything and the radiologist's report suggested I might need pre-operative MRI.

The wait thus far has been agonizing and I'm worried about further delays.

On wait times: I had to wait 72 days from my second abnormal mammogram (BIRADS-4) until my vacuum-assisted core needle biopsy. If you count the time from my first abnormal mammo (also BIRADS-4) in Nov. 2020, the wait to diagnosis was 269 days. I wanted a biopsy after the Nov. 2020 abnormal mammo but the Ottawa Breast Health Center would not bring me in then. Two questions on wait times:

1) Anyone have experience with what are current wait times between first surgical consult and actual surgery at the Ottawa Breast Health Center?

2) Anyone have experience on current wait times between surgery (lumpectomy) and starting radiation treatment? The literature advises starting RT within 6-8 weeks of surgery for best reduction of risk of recurrence.

Redirects to other relevant posts appreciated!!

redninrah

Hi Liz Girl, im sorry about your diagnosis. I wanted to let you know that I had Dr Lorimer for my surgery. He was wonderful! He knows his stuff! I felt very comfortable with him. I also recently saw Dr Zhang and she is awesome too.

LizGirl

Hi redninrah,

Thanks for the helpful feedback! Was that Dr. Jing Zhang you saw? I always appreciate personal recommendations. I'm collecting names in case of future need as my journey progresses.

Scanning several posts here, I see that you've had quite a journey yourself. Your evident strength and resourcefulness are good inspirations. I hope you are keeping well!

redninrah

Thank you LizGirl, ya ive had many obstacles thrown at me for Reconstruction. Dr Jing Zhang is definately the no.1 in Ottawa in my opinion. Before her I would have said Dr Kirsty Boyd, but now she has changed her job structure. Before her, my surgeon Dr Nicholas Guay, but sadly he passed away recently.