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Oncology consult
B_yvg
9 Posts
Met with medical oncologist today, 6 weeks post lumpectomy. I am frustrated they didn’t order OncoType and now have to wait another two weeks to find out if chemo is recommended.

Stage 1, grade 2 IDC with clean margins in surgery. I was hoping they would say chemo no needed but apparently I’m in the “gray zone”.

I meet with radiotherapy oncologist next week to see what they say (but surgeon indicated it would be required even before she did surgery). So hoping for low OncoType score so can move on with Letrozole and radiation - get this over with.

Waiting is so stressful, not sleeping well and all of this impacting my work. I’m considering a leave even if radiation is all that is recommended. How are others managing to “stop” thinking about their cancer?
5 Replies
Essjay
1953 Posts

@B_yvg it really is hard to not think about cancer when you are waiting for treatment. Distraction is your friend and maybe throwing yourself into work is a good way to distract yourself.

Remember that the cancer is gone - the lump has been removed successfully. Everything you have done now is about chasing possible stray cancer cells. Fingers crossed the oncotype test will show chemo is not advantageous to you.

While you wait id do some nice stuff - meet with friends, take a walk or hike, get a garden going etc. When you start chemo or radiation you will be busy for a while and won’t get stuff done or else won’t feel up to it…

best wishes, Essjay

supersu
1098 Posts

@B_yvg

good morning!
yeah for clear margins 1st time around.
I had to go for a second surgery – so that gave them plenty of time to run the ONCODX….ha ha ha. and then I still had to wait for a result…it does take some time.

did you have to ask for the ONCODX or was it added after the pathology on your surgery sample came back?? I understand that it is a very expensive test, so that it is not done as a routine thing….that could be the reason for delay??

it is so frustrating to have these starts and stops, isn't it? I can hear your fatigue in your post and don't doubt that your work is being affected.

my story-
I had every intention of returning to work after my lumpectomy. I felt fantastic post surgery and honestly could have gone back the next day -- but COVID started the same day as my surgery here….ha ha ha - what are the odds, #amiright
and then, as I mentioned above I needed ANOTHER surgery.
anyhoo, because my work involves patient interactions, ‘we’ all decided that while I was ‘healing’ that I would just stay away.
I have no words of wisdom re: distraction. at this point I basically sat on my couch, ate pizza, and developed a 90 Day Fiance/My 600 Pound Life obsession. would NOT recommend that.

thanks to a wonderful benefits package & a super supportive employer, I just stayed off work until radiation was done and healed up from.

BEST THING I'VE EVER DONE FOR MYSELF. highly recommend.

could I have worked: sure. but it was really a gift to have the time to reflect and just appreciate things. I found this community, I really deepened connection with some women friends over that summer, and took time for me; something that my workaholic personality had never allowed myself.

to be clear--this is what worked for me. others endorse heavily working right through their treatments. it is a personal thing. and whatever you decide is the right way for you. there is no wrong way to ‘do’ cancer.

good luck with the diagnostic…I will cross my fingers for a very low score for you.

let us know how things move along. once your treatment plan is solidified, you will have a goal to work toward and things will seem less wishy washy.

cheers
su

#ONCODX #breastcancer #cancerisawaitinggame #pizzagintherapy

KTA
19 Posts

@B_yvg I also struggle with “clearing my thoughts” and am constantly bothered by cancer in my head. I work, mostly part time, and I do find that helps me a lot. I let myself be distracted by nice weather, and if the sun is shining I try to get outside for a 2km walk around the block - so far, so good in avoiding the rain! I also nap as needed - even though “as needed” seems like a heck of a lot of naps. I try to remember that I'm a person first, not a patient, and the person in me needs a lot of rest.

As noted, there's no wrong way to “do” cancer - so I hope you will be finding some things that work for you! <3

elle29
1207 Posts

6 wks good timing ! Yes waiting sucks when u r just starting and want to move forward . Return to your life ! However it’s done by snail mail, email or a call in what’s next ? An appt. related cancer treatment , management ? Hope something comes soon .

🙇‍♀️ It’s been driving me absolutely on the edge of my seat waiting 4 mnths ! Of what my next Onco appt is about & I called the secretary who said he will discuss it with you then. So I was no further ahead ! Even asking for an agenda .
I happened to post a short Thank you on the cancer site web page, where my Oncologists were pre Christmas . Surprised I got a quick response from one Onco‘s office .

You can try that send a thank you note and perhaps be surprised ! ?

Other wise having contacted the office . U just have to carry on as usual , make your plans anyways . Short of touching base with the secretary , your booking a trip away hoping she responds . Maybe they just need a reminder your still there in the cue ? To ask …
What is the time line for you next , in your care plan ?

Beachalog
44 Posts

@B_yvg I found it super stressful too. I self referred to psycho social oncology and they put me on Sertraline, which has helped a lot.

I also had to wait for my Oncotype, but it turned out to be 11, so no chemo for me. Straight to Tamoxifen and radiation, which I started today.

As I understand it, they don't order the Oncotype until you meet the medical oncologist. You have to agree to it, and to follow the outcome of the test.

I also went on EI from the start of the medical and radiation oncology process. WAY too much to deal with and try to stay sane! I had the secondary anxiety diagnosis too.

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