Hi arpie
Thanks for your response. My oncologist is not directing my treatment or follow up other than meds because lobular cancer treatment is primarily surgical so, as that’s where I started, that’s where I keep being sent back to. I will ask him when I see him what him taking over treatment would look like but assume that will also be expensive.
In terms of location I’m in a tiny country town in the Bass Coast in South Gippsland so there’s really very limited options here without going to Melbourne. This is the same for public or private.
I did appreciate your advice though, and although I couldn’t face paying yet more money to go back to the surgeon and ask more questions - instead went to my GP (which still costs but is less) and he called the surgeon. The surgeon said it’s the mammogram contrast that costs the most money and that Monash Imaging (in Clayton VIC) ’has a higher gap than other imaging centres’ (being clear this location is not convenient for me but where she sends people).
In terms of changing into the public system my GP warned me I probably won’t be seen by August to allow me to meet my 12 month follow up window, and am unlikely to get a mammogram with contrast going public (which according to the second breast surgeon I consulted is the gold standard for lobular cancer patients with dense breasts). I felt disappointed that it felt again like I was being scared into staying in the private system regardless of costs. So much for feeling confident that public patients don’t get substandard care!
Any rate I’m exhausted by the constant costs, differing specialist info and pressure on me to sort things out myself (where to go, having to try to make appointments that are close for the imaging scans and follow up appointment) so I’m just going into the public system and to hell with the rest of it. I can totally see now why some women just give up and walk away after the initial treatment. The lack of support or clear advice I’ve had - including making a call to the BCNA support line who I thought would have clear info/assistance with how to move between private and public - has been quite astounding. I’ve found the whole process very upsetting.
Hi Minka ... It sounds like your GP is a keeper, anyway!!
Did you have a breast care nurse assigned to you? If not - go onto their website and see who is near you .... make contact & 'sign up' with them & put all your queries past them.
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
I am also ILC and had very dense breasts at the time of diagnosis nearly 8 years ago now. ..... and was not aware of the dangers posed by this, masking the cancers! I was not advised to have MGs with contrast - but always have yearly Ultrasound (as well as MG) as it was the US that located my cancers.
The BCNA helpline can really only give 'general' advice - nothing 'specific' (or of a medical nature.) They can usually guide you to other areas of expertise tho. Don't give up on them! 🙃
Technically, once you have the referral for MG - you can get it done at any venue of your choosing. Even if it is specifically written to one Radiology Centre - YOU can choose which one to go with. Your Breast Care Nurse can probably help with info on that. Ring around & say that you need to have it done by a specific Date & see if you can get onto a cancellation list .... see who gets back to you first! 😉
take care & all the best
