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New to the group

New to the group

Posted by Dodi on Jun 24, 2020 7:39 am

Good Morning everyone,
thank you so much for having a group like this and letting me be a part of it; I am so great full.

so a bit about myself... I am 50, will be 51 this year! I have many different medical issues on top of now wondering what is next for me. I am retired from the CAF, and try to keep my mind occupied because of injuries I have been diagnosed with on top of the physical things. 

right now with C-19 happening and the question of the second wave coming, I don’t know what will happen as far as a physical exam and investigation. I was left Not contacted By my health care clinician because it said the hospital would contact me but that didn’t happen. So I have one suspicious lump in my breast that is under or behind the cyst I currently have and they want me to wait 6 months before getting more done by way of ultrasound and mammogram. I don’t know if this is wrong or inappropriate but.... I don’t think anyone should have to wait that long if there is something “ suspicious “, and I have been referred to the breast health clinic but they triage every referral and then decide where you fall into the mix, so I don’t know when that will happen. Ugh....😔 and adopted and birth mother knows pretty much nothing about health history and she doesn’t disclose easily. It took me over a year trying to get her to read a face book message because I had seen she was sick ... she didn’t think I needed to know that she has been diagnosed with Parkinson’s. 

just nervous, afraid, frustrated.... and I haven’t even gotten a diagnosis yet! I talk to my clinician over the phone tomorrow afternoon. I wanted her to see me but I have to go through the hoops that are in place even though she was the one who organized my mammo , and other referrals for my breast. 

sorry for the long intro, I Didn’t know how much it what I was supposed to put in... have a wonderful day everyone and thank you all again. 

Re: New to the group

Posted by Peterpatch on Jun 24, 2020 9:26 am

I am sorry to hear about you being left up in the air. This site has so many caring people that can listen to your concerns and give advice which you can follow or ignore The hurry up and wait is an emotional roller coaster. I suggest you use your fear to advocate for yourself.  Make up a list of questions, place it in front of you when you talk to your clinician.  Why am I waiting six months? Where am I on the list to have another mammogram and biopsy of the breast?  what is the phone number for the breast clinic? Do they know the number for a Liason person to help guide you through the treatment process. I had one to help keep me falling through the cracks caused by Covid-19. You can also ask for the phone number of a social worker to help you deal with your emotional well being. Phone interviews are the norm now for many appointments. Try to find a goal for yourself that will help motivated you get your concerns answered. The paper trail is slow but contacting people moves things forward. You just need to discover who they are and their phone numbers to reach them and move forward in the system. Good luck!

Re: New to the group

Posted by Lianne_adminCCS on Jun 24, 2020 5:11 pm

Dodi‍ 
Welcome to the site. I am glad you found us.
It is so challenging to feel like we are not being heard. Sometimes it is okay to be a squeaky wheel as long as we are respectful about it. Dr's offices and medical professionals see and hear from a lot of people. Not to excuse this in any way but it is okay to poke every now and then if you feel like you aren't being heard . As Peterpatch‍  has said, have your questions written down in front of you in preparation of this appointment and leave space to write the answers down. If you feel like any question is not answered, ask it again. Ask for timelines of when someone will get back to you and who that will be and what their contact info is etc. Ensure you understand next steps . Making them accountable for moving things forward.
I know with my doctor office, if it is deemed it would be better to be seen in the office, it will happen.
It is tricky to navigate this all when you have that point person in front of you and even more so if we are relying on phone or video contact.

Keep us posted and let us know how it goes tomorrow

Lianne

Re: New to the group

Posted by Dodi on Jun 25, 2020 6:03 am

Thank you so much for your replies and support. I was a medic in the military before retiring  due to injury. That is probably one of the worst things because I know how the system “ worked” pre-Covid-19 

I will et you know how things go today. I have group all day up to my telephone appointment so I am hoping that will help the day pass fastest 

Re: New to the group/ clinician phone call

Posted by Dodi on Jun 25, 2020 3:21 pm

Hope everyone is enjoying some sunshine this afternoon! I had my call with my clinician about my concerns and she informed me that she has taken a step to reach out by email to someone at the Gene testing clinic ( for lack of better wording) and explained my lack of family history, 20 years of cysts and mammogram and ultrasounds and my current situation with notation of the suspicious lump, etc. So they are mailing me out a questionnaire to go over and send back to them. Once that is done, hopefully they will arrange for me to be tested for the breast cancer gene. She is also going to reach out the the Breast Health clinic at IWK to see if they have a date for a consultation. AND she understands why I am concerned and she will be seeing me at her office on Monday afternoon!!! So, something is working!!!! 

Re: New to the group

Posted by Wendy Tea on Jun 25, 2020 6:45 pm

Dodi‍  Great job advocating for yourself!  Having cancer is like having a new job. You are learning,  you are forming new relationships,  you are fighting for the tests and treatment you need. Ok maybe a new job would be easier!  It is ok to ask for and push for what you need. Keep going!
Healing takes time and opportunity. Wendy Tea

Re: New to the group

Posted by Dodi on Jun 25, 2020 7:45 pm

Thank you! 

Re: New to the group

Posted by Peterpatch on Jun 25, 2020 9:06 pm

Yah some positive movement! Keep us in the loop.

Re: New to the group

Posted by Dodi on Jun 26, 2020 12:42 pm

Woke this morning with pain in the upper / lateral side of my breast... I guess it would be between 9-10 o’clock if looking at it. It came as a surprise to me so much so that when I placed my hand on it I pulled away. Thankfully Monday I get examined by my clinician. My gut just keeps telling me there is something wrong. 

Trying my best  to Keep it together, to not allow myself to over think things. I have acknowledged that there is something different going on but that I need to try ( as best as one can) to just keep an open mind, and stay positive. 

Re: New to the group

Posted by Peterpatch on Jun 26, 2020 12:47 pm

It would help if you can find some kind of distraction. I know not easy to do with Covid-19. I have made 45 home made contoured surgical masks so far. This really helped the weekend before I started radiation. Good luck from one worrier to another and I mean that in the kindest way.

Re: New to the group

Posted by Essjay on Jun 26, 2020 1:30 pm

Hi Dodi‍ I see you have some lovely responses from some awesome ladies already.

The waiting is so hard isnt it...
I renovated my kitchen through the wait for diagnosis. I'm in Manitoba which seems behind other provinces - my biopsy was 1 month after my diagnostic mammogram and only because i was able to take a last minute cancellation...

Will they not drain your cyst? It seems a likely source of your pain?

I'm sure they've told you all the stats about 70% lumps being benign, and I know it doesn't help. Knowing the stats doesnt help us when we find ourselves in the small percentage...

Sounds like you are dealing with a lot, and I hope you have a counsellor who can help you through. If not, is this something you could explore? Lots of free counselling and CBT courses available through COVID - I'm doing one just now which has been a very helpful refresher for me.

I know you are facing the 'what if' questions just now, and I'm sure your lack of family history knowledge isnt helping. Please be reassured though that only a small fraction of breast cancers are due to hereditary factors. Dense breasts are a factor - there's a bit of a dense breast club in Cancer Connection, and some ladies had delayed diagnoses because of them. It sounds like you have had great care so far and they have been very thorough, just dropping the ball right now when you need to know what the suspicion is...

How are you feeling today?

best wishes

Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: New to the group

Posted by Dodi on Jun 28, 2020 2:20 pm

You ladies are so amazing! I cannot express how much the support means to me. I have been doing a whole number of programs to help manage injuries from my military tours and have found an AMAZING psychologist in my local area. I have been working hard to heal from decades of “ baggage” for lack of better words. She is aware that I have gotten results from my mammogram and ultrasound sound and that my clinician has said she would refer me to other supports, etc. I see her on Tuesday morning and I will have been examined by my clinician by then and hopefully have some better idea of things to share with her. 
I got my Genealogy questionnaire in the mail the other day and have it all filled out, not much on it other than a lot of “ no” answers, because of my adoption I have little info. Will have it scanned to my health records and mail it on my way home tomorrow.
i have been trying to occupy my mind with things... baking- just made a cake this afternoon, dot art on stones- finished my 3 rd one this week , painting in canvas... and I crochet as well. And I have my dog that walks a lot now and probably wonders what the heck is going on lol!!!! I keep finding things that are associated with breast cancer signs. And I think that is what is killing me with not knowing right now. Latest was the nipple changes 😔
ladies you are amazing, I am so happy I went to the site to take a Chance. Take care all.  

Re: New to the group

Posted by Lianne_adminCCS on Jun 30, 2020 4:08 pm

Dodi‍ 

How did your appointment go today? Update us when you can.
I think that dot art on rocks is so beautiful. I don't think I have the patience or a steady enough hand to do that.
And thank you for your service.

Lianne

Re: New to the group

Posted by Dodi on Jul 1, 2020 4:58 pm

Hi there! Happy Canada Day Everyone. I posted the results of my clinician appointment but clearly not here lol!!! I have no idea now. 

so, met with my NP and she examined me and. Took note of all of my concerns as well as her findings. She had me amend my genealogy questionnaire to have “ ADOPTED” in bold letters as well as  that I am considering a prophylactic mastectomy so to please consider contacting the patient as soon as they can. I don’t know what difference it will make that’s okay. I understand there are so many requests for testing. I meet the criteria for testing just based on my being adopted and not having a strong knowledge base of my history. She was making a note to send to the breast health department at the IWK with the new findings/ concerns. So they have information about things changing since first being referred. Along with a photo of my boob lol!

so, I know the waiting game will continue for a while and I am okay with that. She has asked me to keep her updated if any changes or concerns and that if I have heard about an appointment to let the office know. That’s all she can do for me at this point but it’s better than not having any medical support, that’s for sure. 

will try to remember to come back to this feed for up dates. I have no idea where I posted on here the other day. 

and thank you For reaching out and checking on my feed back “L” 

Re: New to the group

Posted by Lacey_adminCCS on Jul 6, 2020 1:52 pm

Dodi‍ 

Thanks for the update. I'm glad you found our community for support. 

I wanted to provide a tip for navigating 😊 To find your recent posts click dashboard- my home- then filter the recent activity to "my activity". You will then see a list of your recent posts! I hope this helps. 

Wishing you well
Lacey