Hi springer,
My ONCO has come back at 17 which means low risk of recurrence, so therefore no chemo.
I’ve been told the prognosis is this same for radiotherapy vs node clearance, obviously the latter comes with increased side effects. (1 of 2 lymph nodes had macro mets)
I have an appointment to see radiologist next week to discuss the radiation treatment
But can’t help thinking has the cancer spread to other lymph nodes and is now spreading to other parts of my body.
Hi again
The spread issue is a real concern for me (and probably anyone that’s had cancer). I had clear lymph nodes, but since seeing the oncologist she mentioned cancer cells in blood vessels which can also move cancer around the blood stream but still offered radiotherapy. I all but begged for chemo, as I was so distraught about it, but she said there was little chance (but in my mind …only one chance is needed) that it would have spread.
The only comfort I have and need to accept is that the tumor is out, my prognosis is far better than some. They can not give a 100 % guarantee all the cancer has gone, because it is basically impossible. I am more reassured knowing I questioned the treatment and there is nothing I could do more to change my path.
I don’t mean to doubt their expertise, but we are human, and I don’t think we would be normal, not to have these worries. Hopefully time will help, and before long 5 years will have passed with no recurrence.
Best wishes x
Thanks for your message, best wishes to you too xx
Hi Ginnylizzy, so pleased to hear that your onocotype test results are back and that you dont need to have chemo.
Please can i check how long you had to wait for the results to come in?
I completely empathise with how you are worried that the cancer has spread, i feel the same and am over worrying about every little niggle.
I asked my Doc about a CT scan to check for spread and she said basically it was a good question and that i would get one if i need chemo. But id really just like one which ever way it goes. Im not sure how I’ll be able to move on without it.
Wishing you all the best for your radiotherapy appt next week, im glad the doctor confirmed both options give the same results. Please do let me know how you get on x
Hi again, so my ONCO results took just over 2 weeks to come back.
How long have you been waiting ?
Ive also had a bone dexa scan on Monday and I’m sure my surgeon said I would have a CT scan too, whatever the onco results. I would ask about that again and say you really want one for peace of mind , surely that’s rationale enough, you would think so?!?
I’ll let you know how Tuesday goes, as I have a list of questions I’m going to ask .
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Thanks ginnylizzy, ive got an appt Monday, which is a follow up from the 2nd op I had. It will also be exactly 3 weeks after I was told the tissue would be sent for the Onco test. My doc said 2-3 weeks, but that it could be longer. i really hope that i find out Monday as im frazzled from the waiting. I’ll ask again re the CT scan.
Hello , how did you get on with your appointment?
Hi, it was really frustrating. There was an issue with the sample for the oncotype test so they had to resend it. It was only resent friday so could be 2 further weeks!
I wish id asked more questions, like what went wrong, but i was so surprised and fed up, i just clammed up.
How did you get on at the radiotherapy appt?
Hi springer,
Oh gosh that is so frustrating! The interminable waiting is so bloomin difficult!
So had consultation yesterday with radiotherapy doctor, and I’ve decided to go for full node clearance . Reason being I want to know if other lymph nodes are involved, because if they are I may be offered chemo, the radiation option doesn’t give you this option. As my ONCO came back low I am not currently being offered chemo. Obviously no one wants to have chemo, but if I need it, I know the short term pain will benefit me in the long term, if any cells have already started to spread !
Also the CT scan with radiation isn’t a diagnostic one ! Whereas if more nodes present she said I would get a diagnostic CT scan.
For me it’s all about knowing I’ve done everything I possibly can within my power to throw at this. I don’t want to have any regrets in years to come if the cancer comes back, although I realise there is no guarantee of that, but at least I will know I did everything possible.
I hope all that makes sense , sending hugs 
and hope all goes well for you.
Let me know how you get on.
Thanks Ginny, yes the waiting is so tough. I’ve googled endlessly to try and find out what impacts the result, but its pointless really as i basically need to just wait n see!
Its such a hard decision to make and i completely understand why youve made that choice. It makes perfect sense.
Ive reviewed 2 studies online and they seem to say the results for radiotherapy are as effective as the full clearance. But as you say its the uncertainty - we could have zero to multiple lymp nodes that are positive, unless they are removed and tested we’ll never know. Id like a full CT scan too as its hard not to stress about spread.
Ive had a double mastectomy so i cant have mammograms in the future and my doc says the NHS doesn’t do scans. So im super anxious about reoccurrence, maybe the removal of all the nodes decreases the chance of reoccurrence, i need to ask that question.
Anways waiting for the oncotype test result and then we’ll decide. Ive also asked how large the cancer was in the lymph node. And to confirm its a macro not a micro.
How long do you need to wait for the op? I wish you all the very best with it xx
Hi springer,
I have an appointment on Monday to see my surgeon, to go through the operation etc, then will be listed. Just hope it’s sooner rather than later.
As a side note, I had an ache in my armpit and arm prior to any surgery, this started around 10 days prior. I thought at the time it’s the cancer spreading . Now that all my surgical and nerve pains have settled, that ache has returned, I feel this is spread to further lymph nodes, especially as the 1 node was a macro met. Of course I could be entirely wrong but so far all my intuition has proved accurate.
Wishing you well x
Hi Ginny, I cant believe that, as I also have an ache in my armpit and feel the same, that there must be more cancerous lymph nodes. I had sentinel nodes removed from both sides (as i had tumours in both breasts) but only have the ache in the side that had the positive node. Its so scary isnt it.
Fingers crossed that you dont have to wait too long. My surgeon said it would be a 2 week wait ish, if i opt for the full clearance.
All the best xx
Hi Ginnielizzy, how did your appointment go today?
I had a further appt with my doc today, but am no further forward. It was all a bit scatty. Half the onocotype test is back - 13 for one side. The doc couldn’t confirm which side it was for. So still waiting!
The doc did advise the positive lymph node is a macromet of 7mm, it was in the pathology report, but she couldn’t see it last week and had emailed the pathology team. Honestly i think i need to ask for a copy of the report as this all seems a bit slap dash. Not sure if thats allowed?
They will discuss me at next Mondays MDT and see me again (assuming the oncotype will be back for the other breast). She was a little more swayed this week to recommending the op, but i guess ill know more once they have all discussed me.
She did say that one thing to consider is that with radiation only treatment- if a reoccurrence happened 10 years down the line that the skin/ nodes would all be hard like rock and harder to get out.
Anyway hope you got on OK x
Hi Springer ,
I have a date for surgery it is Tuesday 26 November. They cancelled today’s appointment as said I didn’t need it! I have telephone pre op on Friday , guess I’ll do my own blood pressure then !
Gosh your onco is taking a while , it’s all so frustrating and causes so much anxiety.
Are you off work presently ?
Hi ginny, ah thats good, glad you dont have to wait too long.
I went back to work last week part time and next week im due full time i guess i can request more time off if i need to ( i can WFH). And I’ll need more time off once i know the next steps. Are you off work? Have you been told how long youll need off after the op?
Wishing you the very best for your op x
Hi deep joy,
A little update, after speaking with my oncologist, she said standard treatment is actually full lymph node clearance and if further lymph nodes involved than I will probably be offered chemo. (Despite my Onco DX being 17) , So that’s what I’ve decided to go for. My operation is on 27 November and I’ve got myself into a real phase of anxiety, and along with low mood. I’m sure I will feel better after the operation, mentally speaking,
Take care x
Hi springer, yes I’m currently signed off work, I just couldn’t cope with the stress of work at the moment.
Take care
Oh my op has been moved now to 27 November, I’m feeling super anxious and very low at the moment x
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Hi Ginny, yes it is so stressful and i completely empathise with how you feel. Im worried about ever little niggle, about the future and wonder if I’ll ever be able to think of something other than cancer.
im def not ready to do my full job as thats quite stressful.
Dipping in to do some, has worked for me, but i’m no where near feeling ready to jump in as normal. My sick cert runs out next week, i think I’ll need to request an extension.
I’ve just been back to the hospital today to get more antibiotics and they will drain some fluid on Monday.
Waiting around is so tough and we just move forward a little and then waiting again!
I will be thinking of you next week and wish you the very best xx
Hi ginnylizzy,
Sounds like you are in exactly the same position as I was at that stage. That anxiety and low mood is also exactly how I felt - but what I can say is the reality was nowhere near as bad as the fear. My op was fine (home the same day) and I was in very little pain, I did have a drain for a few days (which I carried around in a little handbag!) and developed a seroma after it was removed - but that was drained easily and painlessly my BCN.
Try and take each thing one step at a time - so hard I know! I will be thinking about you on the 27th and sending healing vibes. Let us know how you get on. You’ve got this
Take care
Joy
x
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