Forum Discussion

lady_with_green's avatar
lady_with_green
Member
6 years ago

Waiting for my oncologist appointment is doing my head in

My GP sent me for an ultrasound after I had an appointment to get lumps in my armpit checked out. The ultrasound was on 14/6 and 4 smaller lumps were found and a total of 2 larger near my armpit.  I was asked to come back for a biopsy and mammogram. Interestingly the mammogram was completely fine - no evidence of anything. A  core biopsy was done on the larger armpit lumps and 2 FNA on the smaller lumps (I’m fairly certain that’s what happened) on 18/6/19.

I got the news of my diagnosis after work on Thursday 20th June and since then —

Blood tests & CT scans 21/6 Scans clear

Breast surgeon appointment 21/6

Brain scan and full body bone scan 24/6 All clear

Second appointment with breast surgeon 25/6.

Went back to GP to to get medical certificate and copies of pathology 27/6

Second biopsy on smaller primary tumours & 4 clips inserted 28/6.

At my second appointment my breast surgeon said it appears there is cancer in my LNs and she will discuss my case with the MDT at their afterwork meeting on 27/6, she also said I should get a phone call by Friday 28/6 to set up oncologist appointment as my treatment will start with chemo. 

It’s the waiting and waiting and waiting for my oncologist appointment that is doing my head in. 

I called Friday and today and the people who answer the phone are lovely but say they will call me after my doctor goes through my case. The second biopsy results probably are completed. I don’t know all the details yet and I feel that after second biopsy I need to be open minded and prepared that my BC details may change. 

But what I do know from the updated (24/6) first biopsy report. Right breast. stage II grade 3, invasive carcinoma, ER weakly+, PR-, HER2-

I’m trying to stay positive but I feel frustrated. Family and friends have been supportive & caring.

I’ve had a couple of meltdowns in the last 10 days & I’m home alone tonight and dwelling on my thoughts. 

How long is reasonable to wait for an appointment or what have others experienced?

coping
new-diagnosis
  • youngdogmum's avatar
    youngdogmum
    Member
    6 years ago
    I too had surgery first, but based on what I know about the health system as a nurse and with a friend who got chemo first .. I would say if they haven't phoned by tomorrow I would call. They may want to do the MDT first, discuss your results and then have an appointment with you once they all have agreed on the best plan toward (they being surgeon, med onc and rad onc if you need radiation) 

    Weve all been there so can all relate that this is the hardest time ever. The waiting is awful. 

    Please be reassured that if chemo is going ahead first, provided the rest of your health is good, you have no holidays planned in the next few weeks you would like to still do and you don't have to consider fertility preservation (you haven't mentioned your age) chemo can and does start relatively qucikly, ie within a week. Even if you need to have a PICC/port placed it happens very quick. 

    Try to spend time with family and friends this week doing stuff completely unrelated. Reassure them when they ask what's the plan what's the plan that you don't know yet but it's normal at this point in the game :) 
  • Afraser's avatar
    Afraser
    Member
    6 years ago
    Ditto, I had surgery and was then referred to an oncologist. Could have selected someone else but I felt confident in him (he and my surgeon work quite closely together) and it’s proved to be a good relationship. My surgeon carefully did not speculate on treatment after surgery. As the final results post surgery were a little different to those indicated by biopsy, making decisions at that juncture seemed quite sensible. Best wishes. 
  • Brenda5's avatar
    Brenda5
    Member
    6 years ago
    I didn't actually meet my oncologist or radiographer until I had healed from the surgery. The surgeon just told me I would require oncology later.
  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    A week or so is not a long time when it comes to the actual cancer. But it can be a lifetime from an emotional perspective. 
    Understandably, you want to know what is going on and what happens next. Unfortunately, if we learn anything from breast cancer, it's how to wait. Which is both distressing and infuriating. Many of us get to the stage where we are hissing down the phone, 'You don't understand, I want this sorted NOW!' Which doesn't usually work. The machine moves at its own pace.
    Hang in there. MXX
  • Sister's avatar
    Sister
    Member
    6 years ago
    It's quite possible that your surgeon doesn't work at her clinic on Mondays and that is why you haven't heard.  Or it could be that she is trying to line up the best onc for you.  I would give it a reasonable time this morning and try her rooms again.  If they can't give you any info, explain that you were expecting to hear by late Friday and that you're not coping with not knowing what is going on.

    The wait is always hardest.