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Waiting.... waiting....and more waiting.

Waiting.... waiting....and more waiting.

Posted by Dodi on Aug 4, 2020 7:12 am

Good morning everyone. I am starting to become increasingly frustrated in not being able to get results for my breast complaint. 

I have been trying for “months” to figure out everything and I find I am struggling to get information. And I have the ability to write messages to someone who could potentially give me back ground health info, and she refuses to even type the words “ yes” or “ no”. And this person is my birth mother, who appears to have a one sided relationship with me. On top of going through the long wait for an appointment for genealogy testing (which can take up to two years to get), I was called to go to the Halifax hospital, women’s health department for another mammogram, told the result will be at my doctors office on the Monday. A little back ground to this mammogram- was called on 17 July and booked 18 July-, results quickly available, when I try and get them from my doc office, I am told they are on vacation. First appointment I could get is for this week-7 Aug. when I sounded shocked on the phone the reception quickly told me that “ August is just around the corner”... is that supposed to help???  I contact the women health department and I was told that the doctor will contact me within 6 weeks if they need to see me -??????? And if they deem my result in non urgent I will get contacted sometime at least 9 months from now. 
All I am trying to obtain is my own health results. I plan to ask for a prophylactic double mastectomy. I have been on the “lump” roller coaster for 20 years in having fibrocystic breasts as well as extremely dense breasts. So.... I am finding myself feeling so down now And  I’m thinking..... why does this not seem important to others? I have had issues with not getting information since my mammogram in May where one person thought another person was giving the result to me.... but neither did. And weeks later I got the results because I made an appointment 😔 is this the way others are feeling?

open to anything....
 

Re: Waiting.... waiting....and more waiting.

Posted by Wendy Tea on Aug 4, 2020 9:53 am

Dodi‍  I hear and feel and share your frustration.  My doctor requested my mammogram appointment the first week of June and I still wait. Tomorrow I will phone and find out why I still don't have an appointment date. I did give them leeway because of covid.
Yes knowing genetics would be a bonus. In my case all my maternal relatives were gone by age 45. This made me more vigilant.  My cancer wasn't diagnosed until after I retired. 
Your appointment is this week and your medical team is vital to your survival so its really important to treat them with kindness even if, like me, I would want to scream at them. I still think you can let them know in a face to face meeting how disappointed you are with how your file has been handled.  I would explain because you dont have genetic history,  it is potentially a matter of life or death to stay current with all tests. Make sure they understand your anxieties too. All this can be said with kindness and a smile but you deserve to be listened too. Please let me know how your appointment goes. 
Healing takes time and opportunity. Wendy Tea

Re: Waiting.... waiting....and more waiting.

Posted by Dodi on Aug 4, 2020 10:23 am

Thank you Wendy Tea‍ 
I just sat and had a conversation with my Ex Spouse, who has been trying to be supportive as best as they can by listening to my frustrations, fears, disappointment. I already suffer from Anxiety due to injuries from my past military career, which I agree isn’t great and it will escalate very easily. 
I have been so respectful to everyone I have been in touch with, as you said; taking covid into consideration with everything. I think I needed to feel that I wasn’t alone. Because since the first Mammo in May going south with communication to me regarding results and next steps... it’s just scary. 
thank you for your message. It means so much to me to hear from you. Sadly my appointments with my clinician have been over the phone with the exception of one where I have asked her to see me because  no one had touch me to examine things. 

will up date on Friday. Thanks again

Re: Waiting.... waiting....and more waiting.

Posted by Lianne_Moderator on Aug 10, 2020 3:33 pm

Hello Dodi‍ 

How are you managing of late? Have you got anymore information yet?

Lianne

Re: Waiting.... waiting....and more waiting.

Posted by Dodi on Aug 10, 2020 7:43 pm

Hi Lianne
thank you for checking in with me. Nothing else lately. Had a telephone appointment with my clinician who basically told me it was her who ordered the additional mammogram, so here I thought it was a. Doctor at the breast health department because the tech said a name I didn’t even recognize. But I still have heard nothing. Nor have I heard anything for Gene testing. I can’t remember if I stated anything previously about my birth mother not replying with any answers to me about her health history or not. I am very disappointed that the relationship seems to be all one sided. Nothing I can do about it. My breast has been changing in slight ways that I notify my clinician about. She was going to reach out to the breast health department to see if they could shed any insight on wait times. If it’s going to be a significant wait then she will refer me to a surgeon in a neighboring town for discussion about a prophylactic bilateral mastectomy. I have thought a lot about it and although it doesn’t mean I won’t still get cancer, I don’t seem to be getting anywhere. 

if they want to see me at the BHD- Approx. 6 week Timeframe if lucky. 
mid they don’t see me as an urgent case then it’s approx. 9+ months. 
cant get a refer to a different surgeon until the BHD gets back to my clinician... it’s like being a hamster in a wheel. 

I am trying to be proactive and stay in touch with people that may be able to give me an idea, but I continue to hit walls. 
I was lucky to see the information about the dense breast info. I emailed them today to see if there is something I can do here in NS. I saw that the province doesn’t have it listed for women to get ultrasound done after mammography ... as a standard I guess. But there is a risk of the radiologist not being able to see everything at times because of the colour similarities on the films. 

figured if I can help someone else, it will be good for my mind and soul. 

thank you again, I really appreciate you taking the time to reach out. 

Dodi 

 

Re: Waiting.... waiting....and more waiting.

Posted by Lianne_Moderator on Aug 12, 2020 2:38 pm

Hello Dodi‍ . I am sorry you are still hitting walls. So frustrating to say the least. I am all for being a polite squeaky wheel. It is your health. Does your GP know about the walls you are hitting. Never a bad idea to keep them in the loop if they aren't as they might be able to move a wall or two.

Keep us posted.
Take care
Lianne