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

lady_with_green
Member
6 years ago
@Brenda5 thank you <3
Brenda5
Member
6 years ago
With extra node involvement, I get that they do not want to be opening you up and running the risk of spreading it further. Chemo should shrink and or kill off parts among the nodes so that seems the safest. Getting a treatment plan does seem to take time but once you are in the system, things start to make progress.
Re seeing grand daughter you can take precautions. In toileting during chemo, make sure you close the toilet to flush. My chemo nurse said micro particles of chemo can be flung around during an open lid flush.
Suck on a Stepsils antibacterial lozenge before visitors and if they are old enough, make them suck on one while visiting too. Hopefully that takes care of colds and flu danger.
Carry a water bottle with you and obviously don't share with the grand daughter. I drank liters of the stuff to quickly flush the chemo poisons out of my body. You don't want your poor kidneys and liver working too hard and water can help.
At the chemo doctor or even while having chemo, ask for a councellor or a psychologist and see if you can have a breast cancer nurse to chat with.
My nurse got so busy she never got back to me and during the last 5 mins of my last chemo infusion they quizzed me with a performance review which I think may have had did you need a psychologist or councellor. I just wanted to get the hell out of there at the time and said no, no to everything. After chemo psychologically I fell in a heap and a psychiatrist diagnosed me with PTSD.
Sister
Member
6 years ago
My surgeon only delayed a couple of weeks because I asked him to as I had a number of family events on that I really wanted to attend. Try to distract yourself as this is one of the hardest times.
kmakm
Member
6 years ago
Diagnosed Monday, tumour out Tuesday. No special drama or extenuating circumstances; the surgeon had space on his list and it had to come out. The sooner the better as far as I was concerned. Hang in there. K xox
Afraser
Member
6 years ago
Two days between diagnosis and surgery for me too. 6 years and no evidence of disease. The waiting is agonising. Best wishes.
arpie
Member
6 years ago
All the best @CRM ... missing out on the long wait was a bonus, so try not to overthink the results until you get them.. Take it easy for a little while as you heal from the surgery, try and keep S busy as you an whilst waiting for the results and try not to use Dr google as everine’s case is so individual and the stuff on the Internet can often be outdated.

Once I actually saw my surgeon on the Monday ... I had the sentinel node test the next day and surgery on the Wed ..... with good results.

Take care and thinking of you xxx
lady_with_green
Member
6 years ago
Hi @CRM - that was quick for you.
I need chemo first — all treatments are different & my surgeon and oncologist have worked out what’s best for me.
Take care and I hope it goes well for you xxx
CRM
Member
6 years ago
I was diagnosed on Monday and had surgery on Wednesday (yesterday). I'm thankful that the surgeon acted so fast but now I am scared he knows something I don't... like it was super urgent for him to get it out or something. I don't get my results until next Thursday but he did say if they come in earlier he will call me. I am honestly terrified about what is ahead but I do feel lucky about living in inner Melbourne and having local hospitals like the Women's and Peter Mac. I am such a ball of nervous energy at the moment.
kmakm
Member
6 years ago
I had four children at school during chemo and I didn't get sick once. As the others have said, once you know what day of the week you have your chemo, you'll be able to plan.

Your oncologist will tell you when your immune system is at its lowest, when you should be most careful.

If your granddaughter is sick she wouldn't be at childcare I presume, so if you are able to continue collecting her (I didn't drive for a seven to eight days after my infusion as I didn't feel well enough to be in charge of a vehicle), just a bit of extra vigilance should be enough. You could put in a special request to have a staff member bring your granddaughter out so you don't have to step into a gajillion germs. You could use this time to emphasise hygiene with her, a teaching moment if you will! The importance of hand washing, covering your mouth when you sneeze etc.

It might be handy to have a back-up driver who could step in at short notice if you didn't feel up to it, or if your granddaughter needed collecting if she feels unwell.

It's somewhat unknowable at this stage because we can all respond quite differently to the same drugs. Ask your oncologist and be guided by them. K xox
Zoffiel
Member
6 years ago
It's a lottery @lady_with_green_eyes
As everyone else has said, don't over think it, take sensible precautions and hope for the best.
Some people get no side effects, some get all of them. Most are in the middle. Amazons fail and mice flourish. Or the other way around.
Cancer is a genetic and environmental mystery for most of us. It's worth observing how interesting the process is even though it's one of the last things you'd choose the do. MXX