Best Of
Re: “This sucks”
An update on my situation
My doctor (GP) told me that I had breast cancer, then I saw the breast surgeon and she said it isn't cancer.
I do not agree that I don't have breast cancer. I have Ductal Carcinoma In Situ and another possible carcinoma.
I have an early form of breast cancer that requires treatment, and I'm going to need monitoring for the rest of my life.
It sounds like the DCIS is part of a larger tumour that could be invasive.
I have several lumps in both breasts. There were issues with both biopsies. With the first biopsy, not all of the lumps were biopsied because they couldn't see them under the ultrasound. With the second biopsy, I'm not sure if the radiologist biopsied the correct lumps (I can explain why).
One of the lumps in my left breast has gotten bigger and it is sore.
I have pain in my left armpit and I'm concerned that it is cancer in my lymph node.
I have a tumour that has been growing on my ribcage. It has gotten bigger and it is now sore.
I have been having problems with the breast cancer service at my local hospital for several months. I haven't felt supported by them. I have no confidence or trust in them. I requested a meeting with the Chief Medical Officer to talk to her about it.
She gave me some options. I have decided not to continue with their service. And I have asked my doctor to refer me to the Peter MacCallum Cancer Centre. My doctor kind of argued with me about it but in the end she agreed (she wanted me to go to the Monash Breast Clinic but I prefer to go to the Peter MacCallum Cancer Centre).
My doctor also kept me waiting for an hour and 20 minutes and she didn't say anything or apologise. So I'm going to find a new doctor.
I'm on a low income and I can't afford to see a private breast surgeon. I have enquired about it. The problem with it is you don't just pay for the consultations - you have to pay for everything: scans, biopsies, surgeries etc. And I don't have private health insurance.
It isn't helpful to tell me that an early form of breast cancer isn't cancer. Some of the staff at the hospital have also been saying that it is benign but it is not benign.
I think they should be focusing on the early detection and prevention of breast cancer. And they should be supporting me and helping me to make decisions about my treatment.
I'm not afraid like I was. I feel much better after taking action.
Actually, is it possible to change my username? It doesn't reflect how I feel anymore.
Coffee
“This sucks”
Re: New to This
Hook wire done and surgery done and it went well
feeling better now that this part is done
everyone has been amazing xxx
Re: Access to NDIS?
You sure have been to hell and back. The mets group does seem almost silent doesn't it. Very very occasionally I see a post but I feel our group is out to the side and a bit forgotten in some ways. I have posted here too as I usually get more help and responses.
I understand your exhaustion and how this disease takes its toll. I had BC in 2020 and diagnosed with mets last year. Prior to 2020 I had 4 malignant melanoma and numerous other surgeries. I think I have had 12 general anaesthetics in just under 20 years, not to mention chemo radium and other bc treatments which continue. It wears you down.
I have often wondered about the NDIS. Our treatments and care costs a fortune and getting help doesn't come easy.
I think you would need your dr to say you have a disability and you would need to meet the criteria- see the link above. Maybe give the bcna hotline a call to see what help you can get.
Also you may want to tell your children. While you think they may not know, at their ages they are usually very aware of a parent's struggle. Bnca would have information on telling families. See link
https://www.bcna.org.au/resource-hub/articles/telling-your-children/#:~:text=1800 500 258&text=Telling your children that you,sense if something is wrong.
The cancer council also has information to help and Canteen helps too with children of parents impacted by cancer.
You can't do this alone. It's too hard. Have you got friends or family that can help you?
You can call bcna or the cancer council to see what can be offered to help you.
Do you have a psychologist or counsellor or a breast care nurse that you can discuss this with? Maybe your oncologist can refer you to a social worker to help you navigate things to help you at home.
Where are you located? Maybe other members know of what's on offer in your area to help.
Sending you much love ❤️
Another sister reporting for duty
Hi all
I’m Linda, a 54 yo from the Barossa Valley in SA, a wife, mother to 5 humans and 1 furkid, a lover of all things Disney & Robbie Williams and living with a fairly new diagnosis of DCIS.
Historically, I’ve had 3 lumpectomies previously between 2003-2015 and been having regular mammograms since. In late January 2024 I had my 2-yearly mammogram, no symptoms although I did tell my husband I had a bad feeling on the day. Four weeks later I got a call from BreastScreen SA asking me to come in for further testing on an area that looked a little abnormal but likely to be benign calcification. The following week I attended my appointment and had further mammograms, an ultrasound and a very uncomfortable core-biopsy. Two days later I attended the results clinic with my husband where we were told the pathology came back malignant and I had Grade 3 DCIS. It was not what I expected to hear. Within 24 hours I’d seen my GP for a referral, seen a private Breast Surgeon and had a date for surgery (hookwire and wide local excision). Surgery was done on 08/03/2024.
Side note - I’m a Clinical Nurse and a very empathetic, supportive and caring person who has cared for many patients in my career including providing palliative care to a dying friend so he could die at home in the arms of his wife. I’m also resilient when required but make no mistakes, I am a hot mess right now. I’m a practical person who likes facts, likes organisation and control of my life so this waiting period between surgery and my post-op appointment (scheduled 22/03/2024) with my surgeon to get my pathology results is challenging me, draining me and playing merry hell with my emotions.
Although I don’t know what I’m dealing with until I receive the pathology results and I appreciate there are such worse BC diagnoses than mine, so I sincerely hope I’m not offending anyone else, but I can’t help but question my mortality. What is wrong with me?
Working in the Theatre sector as a Clinical Nurse gives me the advantage of knowing inside information on which health practitioners are considered top of their industry. So I know I chose a great Breast Surgeon but my over-active mind is wondering why he hasn’t done a CT scan, PET scan or bone scan to check me out thoroughly. I’ve had no blood work done. I lost 25kg in 3 months late last year which was attributed to an IBS diagnosis, but what if it’s related to my cancer?
I have no family history due to being adopted.
I reached out to the local McGrath Breast Nurse several days before surgery and was told I’d get a house visit my first week home - that was last week and I’ve heard nothing. No follow-up call, nothing. I know it’s only DCIS but I’m screaming out for support and I can’t talk to my friends about this - it’s just repetitive and often a very draining conversation. Sadly, I have a very fractured relationship with my mum so am getting next to no support or acknowledgment from her so it’s just all a bit heavy and dark for me at the moment. What I’d give for an “I love you” from my mum!
I’m guessing that come Friday that I may start to feel a little less lost and vulnerable as at least decisions can be considered once the pathology is known. Am I right?
All of this is overwhelming as heck to me and I’m not sure what I should be asking at my appointment on Friday. You don’t know what you don’t know!! So any guidance is gratefully received.
In closing, I’m sending each and every soul the squeeziest of hugs and best wishes for a positive day.
Thanks for reading my blurb!
Linda xx
Re: New to This
Re: Slow Down Project
Re: Slow Down Project
d like iserbrown I still have most my school certificate work. I have great memories of my needlework/sewing classes (4 years worth.). Only part that held my pass marks down was the history in costume could never match the years with the period costumes.