Seeing surgeon and medical oncologist question

Jinni

I am a little confused and sorry if this isn’t an appropriate question.  I have had a lumpectomy mid April. Surgeon referred me to radiation oncologist and medical oncologist.  I have just finished radiation and went to see the medical oncologist for hormone blocking meds and was advised I need to see the surgeon in 3 months then 3 months later the medical oncologist, 3 month later the surgeon again and so on for 2 years.  I apparently see the surgeon for mammogram and ultrasound every year as well.  Is this normally what happens.  I was under the impression I would continue with my usual yearly doctor/specialist for mammograms and just deal the the medical oncologist.
I paid for gene testing and the surgeon won’t provide me with the results.  Is this also usual?
The whole progress of cancer is stressful.  Wondering if this is the norm?

arpie

The first 12 months is very busy with appointments all over the place - and it can include regular visits to your surgeon, Onc & Rad Onc so you are seen every other month by at least one of them ..... then after the 12-24 month anniversary, the appointments spread out & then become yearly (you see one team member every 3-4 months.)  It gives you peace of mind that they are 'onto it' and checking for any abnormalities and also your physical & mental health ...

I am rural and the yearly breast screen bus totally missed my Invasive Lobular Cancer at the start, so I prefer to go yearly now to a 'regular' radiology facility in a major nearby town that has the 3D Tomosynthesis technology (as the breast screen buses are usually only 2D technology.)

My surgeon always did his own Ultrasound on all the early visits as well, which was comforting too.  All your results from US & MG, blood tests & other tests will be passed on to all 3 team members - your surgeon, Onc & Rad Onc PLUS your GP .... so they can all keep a check on you ....  

You should definitely be given ALL your reports from ALL your teams (Your GP should also be getting your results too - so ask them if you can have a copy) & that includes your gene testing. Do you have a Breast Care nurse?  They can intercede on your behalf to get the reports, if the surgeon is not forthcoming xx

take care & all the best xx

Blossom1961

Seeing alternate specialists every three months for the first two years is the norm. It then reverts to every six months. They want to make sure the cancer is staying away.
I don’t know about the genetic testing but would have thought it was illegal to withhold this information from you.
Being diagnosed with cancer is extremely traumatic but sometimes we have to advocate for ourselves even though we just want to curl up and wish it away.
Sending big hugs

Jinni

Thanks for your responses.  They are very helpful.  I did ask my surgeon for the genetic test results and he said ‘why do you want those for’.  At the time it was thought that I could possibly have endometrial cancer plus my sister had breast cancer twice and has since passed away.  I now don’t have much confidence in the surgeon.  I never really had a breast care nurse as my surgery finished late afternoon early evening and I left the next morning.  Someone did come and visit but I don’t remember her name and there was so much going on.
thanks again for your help and I will persevere for a year or two. 💕

Cath62

Hi @Jinni, you are absolutely entitled to those genetic results and I don't understand why they were not given to you. I get copies of absolutely everything that is tested and my oncologist is prints all my test results for me. I would simply say to your dr that you like the details and you want printed copies of all your test results. Best wishes 

arpie

I believe it would be your Medical Oncologist who would properly explain your Genetic testing results to you (as it is not really the surgeon's domain!) .... and they should also give you a copy of them, when you request it.

Get a big box & put all your scans/reports/blood tests in it - then you always know where they are too  

take care

Mez_BCNA

Hi @Jinni, you may also find the below information resources from My Journey and Cancer Council helpful also:

Follow-up care after breast cancer treatment
Cancer Australia Statement- Influencing best practice in breast cancer
Cancer Council - Cancer Care and You Rights (Refer p42)

Jinni

I the surgeon did mention that there was no gene markers, that was when I asked for the results.  Thanks for your help.  I feel a little more relieved about the process.❤️