Hello everyone, its been a while. First...my update. I was diagnosed with invasive lobular carcinoma early December, had 2 wide local excisions (3 tumours, 22, 10 & 5mm) plus extensive atypia hyperplasia. Clear lymph nodes. I am partly through my radiation therapy & feeling ok so far. The CT and Ultrasounds/mammograms didnt really show the tumours as I have dense breasts. It was only the surgeries that found them.I would like to have a PET scan to see what is really going on in both breasts. I have referral but found out it is not covered by any Medicare rebate and it will cost around $950 (apparently BC or prostate Ca is not covered?!) Has anyone else heard that? Anyone else had a PET scan for the same? Or is an MRI just as good at detection?Thanks ladies...X :smiley:

I paid for the first one I had. Then I discovered that it is possible to get a subsided one through Peter Mac. There was enough going on with my recurrence that they used some internal funding to get me into the machine as it wouldn't have happened otherwise. Evidently if there is a suspicion it might be in your brain they will do it.

I had a breast MRI due to dense breast tissue pre surgery to check the other breast so they could decide if needed sentinal node in the other breast at time of bilateral surgery . It was fully funded by Medicare in a SA public hospital. The radiologist recommended it as tumor wasn't visible on mammogram.

Hi Lisa. I am having a PET scan tomorrow at Peter Mac as there is some weird node activity happening. I have not been feeling well for the past 8 weeks and have had all kinds of scans which showed borderline para-aortic node enlargement.The awful and unfair thing is that I have breast cancer and being treated at the RMH. I also was diagnosed with a melanoma and was treated at Peter Mac and was discharged earlier this month. At my appointment at the RMH last week they contacted Peter Mac and organised for me to have a PET scan. If you have had or have been treated for melanoma you can have a PET scan for free. Yes, Breast Cancer does not afford the same luxury. Very unfair. Lucky me having two primary cancers.The Breast Care nurse said yes the PET scan was about 950.00. I paid for a colonoscopy and gastroscopy late last year out of my own pocket as I don't have private insurance and I just could not wait.Best wishes to you Lisa and I hope that you decide what is best for your situation.LoveSandraxxx

Hi Lisa,i also have dense breast tissue. My surgeon recommended MRI which was not covered by Medicare and was $661 although apparently subsequent ones are. I did a trial so my next MRI was covered by that. I am glad I had the MRI as it showed my cancer much more accurately, and my treatment plan was changed as a result. Good luck.Kate

I had a PET Scan thru The Northern Hospital, didnt pay a cent..

PET Scan costs? | BCNA Online Network

au0rei
Member
8 years ago

Lisa50 said:

That's right auOrei, it is easy for others to comment when they aren't the ones going through it! My GP said it was over kill as well. Did the PET scan reveal anything different than other tests? I am still thinking of going ahead even if I have to pay, just for my own piece of mind. Radiation....what it might give you cancer? lol ;)
Thank you x

For me the pet scan shows same results as the whole body bone scan (which I did in SA Calvary hospital radiology dept as it was in SA that I found about the lump). My radiology oncologist looked at my CT scans first and commented that they were clear but he was a gorgeous soul and wrote out the PET scan for me. xxx
Share
Member
8 years ago
Hi @Lisa50, I can advise you that the CT scan came up with the results that we already knew - I have secondary bc in the bones.
The bony mets that showed up on the CT scan were in those areas we already know exist. A PET scan was recommended as there was a "lesion" in my lung after a lung infection that had me admitted to hospital 12 months ago. Lesion size & shape unchanged in that time.
I was advised that a PET scan would show up any "hot spots" (bit like a bone scan but more comprehensive as it shows organs etc).
The PET scan did not show us anything new/positive that was not shown on the CT scan that we already know about.
However, in hindsight it is one thing that has been ticked off the list of scans for comparison and measure.
All the best Lisa with your upcoming appointments.
Lisa50
Member
9 years ago
That's right auOrei, it is easy for others to comment when they aren't the ones going through it! My GP said it was over kill as well. Did the PET scan reveal anything different than other tests? I am still thinking of going ahead even if I have to pay, just for my own piece of mind. Radiation....what it might give you cancer? lol ;)
Thank you x
au0rei
Member
9 years ago
Hi Lisa50, I had a pet scan prior to my chemo. After my surgery I quizzed my surgeon about the lymph nodes in the centre of m chest wall as she removed the three on the left. She said if I was concerned I could do a pet scan. I was referred to a public hospital in Melbourne where i live and it was bulk billed. My chemo oncologist kept nagging at me that they and I went overboard with doing a pet scan since I have had surgery but it's my body and he's not the sick one! He did voice his concern about having too much radiation and yes I understand his concern but my surgeon assured me it is okay short term. xx
Lisa50
Member
9 years ago
Thank you lovely ladies for the info! There are so many decisions & each BC case is very different, can be confusing!
I am in Adelaide and I see my surgeon again next week so will get his advise. I just don't want to 'miss' anything. I think the MRI is quite good at detection. As always, the waiting is the worst!
Scooper, good luck with your PET scan tomorrow! :)
Butterfly40, our situation is similar, I want to wish you all the very best with your surgery! :)
It is very comforting to chat to other BC 'friends' who get it!
Thanks again all <3
Butterfly_40
Member
9 years ago
Hi@Lisa50, I was diagnosed with invasive lobular carcinoma December 16. I felt the first lump, mammograms and ultrasound confirmed it. When I went in for biopsy, the ultrasound found second lump in the same breast. I had wide local excision removed two lumps. My pathology reports indicated invasive lobula carcinoma and lobula carcinoma in situ(pre cancer changes) across the whole specimen. I was offered options of radiotherapy or mastectomy. I became worried about my another breast, because from what gathered that lobula carcinoma in situ are likely affect both breasts. I had MRI a few weeks ago, MRI found another lesion in my another breast. A few specialists have studied my MRI, they called my breasts "nightmares " like a Christmas tree lighting up and very dense. I am waiting for double mastectomy.

Good luck with your treatment!
Share
Member
9 years ago
Hi @Lisa50 - I had a PET scan on 10th March.
Nor sure what state you are in but the only places in "Sydney" (that is greater metro area too, I believe) that offer a PET scan are hospitals RPA; Liverpool and St George.
I had mine @ St George and I was out of pocket $600. Yes, B CA is not covered !
Cate64
Member
9 years ago
I had a PET Scan thru The Northern Hospital, didnt pay a cent..
KatyJoy
Member
9 years ago
Hi Lisa,
i also have dense breast tissue. My surgeon recommended MRI which was not covered by Medicare and was $661 although apparently subsequent ones are. I did a trial so my next MRI was covered by that. I am glad I had the MRI as it showed my cancer much more accurately, and my treatment plan was changed as a result. Good luck.
Kate
Scooper
Member
9 years ago
Hi Lisa.

I am having a PET scan tomorrow at Peter Mac as there is some weird node activity happening. I have not been feeling well for the past 8 weeks and have had all kinds of scans which showed borderline para-aortic node enlargement.

The awful and unfair thing is that I have breast cancer and being treated at the RMH. I also was diagnosed with a melanoma and was treated at Peter Mac and was discharged earlier this month. At my appointment at the RMH last week they contacted Peter Mac and organised for me to have a PET scan. If you have had or have been treated for melanoma you can have a PET scan for free. Yes, Breast Cancer does not afford the same luxury. Very unfair. Lucky me having two primary cancers.

The Breast Care nurse said yes the PET scan was about 950.00. I paid for a colonoscopy and gastroscopy late last year out of my own pocket as I don't have private insurance and I just could not wait.

Best wishes to you Lisa and I hope that you decide what is best for your situation.
Love
Sandra
xxx