my journey

[carolyn2]

My journey through the suspected and possible ride of breast cancer. By CAROLYN CLARKE On the 9th January 2009 I went to my family doctor because i started bleeding from both AND HAVING examine me when I walked in to his office covered in blood breasts and nipples to be precise He sent me for an ultrasound because he found something but didn't tell me what it was That while trying to deal with your mum who has a terminal illness and has to go into a nursing home and can't look after you. That in itself is a rollercoaster enough to send me over the edge with panic it did landed me in the hospital. Panic anxiety disorder. Tough choice when you don't understand a lot and you're intellectually disabled but I got myself booked in for the aspiration on the 23rd January 2009 After weeks of worrying and no one explaining to me that I could have breast cancer . I knew people died from this and found a site called MD junction and a friend who is my age named Jessie Harris was kind enough to explain to me that IBC inflammatory breast cancer doesn't show up on mammograms and ultra sounds With little help from my doctor and not many specialists in the ACT where I live but having had the rash and the lumps under both arms As well But why wont my doctor refer me to a specialist maybe he doesn't think I need one But as im 34 and just because I have had a negative ultrasound doesn't rule it out But if I am going to get sick quick I am going to need support I have a psychologist and a But the stress of IBC and no treatment is really starting to cause more stress and worry I get new symptoms everyday Just finding out about treatments is tough and the emotional wreck I am is a nightmare well after 8 long months of finding out I am finally able to see a surgeon by the name of ian Davis- parker I am hurting and I am sore and my breasts are really painful and my family on my fathers side Will not support me . I was hurt but just finding a psychologist who will listen and support me is tough I have very little friends and very little family although when my doctors reports came back from the specialist my doctor didn’t like the sound of what he was getting The fact that I started bleeding from both breasts and now I have hard lumps in my breasts I can feel them and they hurt like crazy As well as the rash I get and discharge I get which is a brownie chocolate colour Everything I have said to my dr now is a little easier because he believes me I have ordered a my journey kit and that has helped im going to keep some recorded information in there Treatments for someone who doesn’t have a clue is tough The support the my health booklet has given me is good because I now have a way to communicate with my doctor I realise my friends are busy with their own lives but I certainly don’t want to infringe on them with this Now I know that my few friends care but I have my cyber friends in America and Md junction who have been through what I am going through The breast cancer council has been wonderful. The fact that my mum and peter didn’t believe me when I said I was allergic to iron (fe) things are just going to get worse Now that I have an appointment with the specialist my mind is still going 10zillion miles an hour and still is But the main things that lead me to suspect breast cancer are Still bleeding from both breasts And the test results I have and the surgeon mentioned photos and other things Everyone keeps telling me that breast cancer doesn’t hurt Yeah right And im too young for breast cancer ive been told that thickening of the skin is yet another part of inflammatory breast cancer I am in constant pain and I am sick and tired to fight this anymore Inflammatory breast cancer information is enclosed I now have bleeding nipples and skin thickening and shortness of breath and it hurts I want to have the lumps removed but am in constant pain and have new lumps felt aspirin doesn’t work I have had to upgrade to a anti inflammatory medication or breast cancer I want a lumpectomy done It’s the only way to find out . this is my story and its a tough one im running out of energy trying to find out (help) I love to chrochet and cross stitch I am studying certificate 2 in business and I have an ultrasound to get done because my doctor found something that he didnt like so im back to square 1

[AmandaC]

Dear Carolyn, I am not sure what to say but wow, what a rough trot. Sounds like you may need to push a little. I had to push and push for myself to get help and my husband when he was sick. I actually rang the hospital and found out how to get an oncologist, then went to our doctor and said write a referral we are booked in first thing tomorrow. Sometimes you have to push to get anywhere. I would also suggest calling the cancer council not just for some great support but also advice. Push, fight!! you can do this. XX HUGS Amanda

[Jules2]

Hi carolyn I wish you all the best and hope that you can get the help that you need. As Amanda has noted, contact the cancer council as they have some fantastic support services in place and i am sure they can help you. Julie

[Sailor]

Hi Carolyn2 Firstly it is your right to get a second opinion and you family Dr does not have a right to refuse to refer you to someone. If they do they are leaving themselves wide open to major problems. You however do not have the right to demand treatment. So if your family Dr wont send you for a second opinion when you politely request it, maybe it is time to change family Dr. That may be easier said than done as you may live an area where there are not many alternatives. Ring the Cancer Helpline 13 11 20 and discuss your situation with them. Also try to get connected to a major hospital where your case will be considered by a Multi-disciplinary team - ask the surgeon whether or not he is part of an MDT - if he is not find someone who is. It is well established that you get better treatment and better outcomes when you have multi-disciplinary care. Good luck Sailor. An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody

[carolyn2]

hi sailor , firstly in some cases i agree with you but i had been living with it for 2 years prior to actually seeing my family dr he thought it was a stomach virus but i did refuse treatment at first because of emotion instability i was scarred i had lost 14 kilos while my mum was away over seas i could not tell them so i let the advanced care directive do the talking it has recently been updated to say i would like all available treatment I have limited doctors where i am and the support level for me isnt great the medical world hasnt been too kind to me . i actaully have every right in the world to demand treatment its just finding the right treatmenbt for me

[carolyn2]

thanks for the support julie i apreciate it

[Sailor]

Hi Carolyn2 When I was talking about rights I was doing so from my understanding of the legal situation. Apparently we do not have the legal right to demand treatment, but it is our right to see another treating doctor. However, if we are refused treatment and it turns out that we were correct and should have had treatment then we can resort to taking action against them. Cheers Sailor If in doubt, stay out to sea. No one has ever gone aground on a wave. Anon

[carolyn2]

hi amanda I found out in jan 9 i was discriminated against because of my disability I am deaf so it makes things harder i also have an anxiety panic disorder

[carolyn2]

sailor when this post was written i was being checked for breast cancer and heavily engaged in a medical malpractice suit against the ultrasound people who mis diagnosed me . I have now got a little treatment and a good doctor and i intend to keep him