Hi

i just wanted to reassure  you that you are not alone with the anxiety and the cycle of looking for information then regretting it and panicking .  I'm new on here too but I've read a few posts where members have said Google information does not take into account your individual circumstances which is do true 

i was diagnosed January and had an agonising wait until August for my surgery due to Covid so I know exactly how you feel .

i got the onco test and did not require chemotherapy.  

 Good luck for your oncology appointment, I'm sure all your questions will be answered 

xx 

Hi 11rolo

Thanku for replying, and reassuring me I am not alone in looking at too much information. I am still very cross with myself as I know I should not have gone looking as I repeatedly seen, every case is individual, and my every intention was just to look for hints and tips but I fallen into the trap, and I did know better!!! Now its a case of trying to calm myself down.

Poor you having to wait 8 months for surgery, that must of been horrendous. How are you doing now? Are you recovering well from your op? Good news about your onco test. Thats the bit that I am really worried about. On paper, I do fit the criteria, and do have a small chance to avoid extra treatment, but what if its not offered, or I am unsuitable......thats my crazy thoughts at the moment. I just wish I knew for definite....its the not knowing.

Thank u again xxx

Hi Moonpuddle

I think that was the problem, I did call the BCN a couple of hours after I was told, and felt she was useless. I wanted to know what to expect from the first appoinment with the oncology, what kind of tests could I have, what do I need to bring. Then if I moved on for chemo, what happens. I expected that was my path, and needed to understand what happens next. She told me nothing. By reading other peoples stories I learnt a lot more than my BCN told me. I know a lot of what I read may not even happen, but I felt more informed by others. But I also found out a lot more info out...and frighten myself.

Thanku of you support in my moments of madness. I am starting to calm down, but still at very high levels of anxiety. I appreciate your virtual support xxx

Good morning !

i am doing well following my op, I can't believe it's 8 weeks today !   I'm now awaiting appointments for radiotherapy.  I was in the grey area for that .  One of the margins had some pre cancerous cells in it so whilst not enough for them to say I should have it as the risk was still low, I said I wanted to proceed.  I hope I've done the right thing as I know it isn't without risks but I would have worried about lingering cells 

sorry to hear your BCN didn't give you the answers you needed.  Is it worth phoning them again ? I know here there is a team of them and you may get a different one .  You may also be able to explain after reading google where your worry is with regards onco test and chemo.   It's worth a try and it might just make you feel so much better.

Good luck and I wish you and everyone reading this post a lovely weekend x

Hi 11rolo

From the very start, my surgeon always said I was going to have radiotherapy, and I never even questioned it. She said I needed it and I accepted it. Even with clear margins...although I am having extra now to the lymph nodes, but I was always going to have radiotherapy, so might as well have extra.

I done my research and its again, not going to be nice. I picked up tips like drink plenty of water, have plenty of rest, soft bras, and ask about creams for burns. (Best one, which made me laugh was sanity pads for burns - but if they work, lets do it!!!)

I spoken to 2 BCN now, and they both were a bit useless, more tea and sympathy than given answers. I get they dont want to say anything wrong, but it does make me look at things more. My problem is the lack of direction, at the moment xxx

Glad you made the choice aboout radio, and your recovery well from your op, and hopefully your radio wont be too bad. xxx And again thanks xx

Hi.  I read your posts and felt I had to respond.   I know EXACTLY how you are feeling at the moment.   The time from surgery to having a confirmed treatment plan is the worst!   The not knowing, the questions and yes the googling trying to anticipate what might happen, looking for studies, statistics or other cases that might be similar!   Aahhhhh it becomes all consuming and the only thing you can think about!   Diagnosed on 17th Aug with grade 2 IDC er & pr positive HER borderline. I had wide local excision and slnb on 9th Sept and had to wait 10 days for results.  Removed with just clear margins, clear nodes but HER2 still inconclusive!!!  Was told 20 sessions of Radiotherpy and 10 years anastrozole.   I drove myself totally and utterly insane wondering how they could decide a plan without HER2 results (which ultimately would require chemo IF they came back positive).   I finally had my appt with oncologist around 2 weeks after surgery and he was BRILLIANT!   He explained everything to me, reasons behind decisions etc etc etc.   My advice would be..... write down ALL of your questions.... ALL of your concerns.... everything that you can possibly think of now.   Then stop looking at google.  I promise you'll feel better just making notes and getting things out of your head and on paper.   Your BCN probably can't give you the answers but your appt with radiotherpy/oncologist will give you everything you need.   Do you have a date for this yet?   If you feel the urge to google, look back at the notes and remind yourself that the ONLY person who can answer these questions is the oncologist!

this is a horrible time and the mental torture of this disease  is worse than the physical effects sometimes.   Unfortunately for any control freaks (like me) we have to learn to be patient and put our faith in the experts.    I was nervous about asking the oncologist questions but I soon realised that he was pleased I done some research and was prepared to challenge him .   Sorry for the long post but I really related to how your feeling

take care xx

Hi Diggergirl

Thanku for getting back to me and understanding! You are right, nobody can answer my question, except my oncologist and that's why I am so cross with myself! Everything you said, I knew from the first bit of waiting I did. (I had to wait for my HER results before they performed surgery) but I went against everything people say and I already knew, hence why I am so annoyed with myself. 

Good news on your clear margins & nodes! That's really good news! Have you started radio yet? If so how are you getting on? 
take care and Thanku for being so kind xxxx

Hi Kelstar.   Sorry for the late reply!   The last week has flown by (back to work before rad starts - soooooo bored at home!   And all the appts in between).

had my planning session for radiotherapy on Tuesday.   Was easy enough.... saw oncologist (great guy), CT scan and the lovely "three dot tattoos".    Everyone at hospital were amazing and despite feeling a little nervous walking through the doors they quickly put me at ease and I actually enjoyed the banter with them .  It is weird how it suddenly hits home as you walk into the hospital.  
 

was a bit shocked when oncologist told me that they had only achieved 0.3mm clearance on part of tumour!!!!   He said normally they would do further surgery but didn't want to as it would mean cutting into chest wall.   Instead they will do boost.   So hence 20 sessions rather than 15 starting 21st October.   Just want to get on with it now.   
 

been on anastrozole now for about three weeks and "touching wood everywhere" I seem to be ok.   Some hot flushes at night and difficulty sleeping but if this is as bad as it gets I'll be dancing in the streets (after reading some of the horror stories of people on it!)

how are you doing?   Any news about your treatment plan... did you get the oncologist test?   How are you fairing from surgery

sending best wishes xx