Well, the next scan, blood test and education program at the Greenslopes hospital done today. I am starting to feel this is real and my heart is pounding. I have been gradually telling those who need to know. A friend rang and told me the story of a young friend with cervical cancer who at 32 lost the battle. She asked why I was having chemo first and then the op. The surgeon said I had two options and in my mind I felt this could be the better option for me, no real reasoning. I am seeing my local GP tomorrow to talk the final decision over with him. I realise my friend was talking from the point of shock but she has sent me into a bit of panic and dread which is not where I want my mind and h

I was diagnosed with grade 3 stage 3 multifocal triple positive with nodes on the left in 2016. The MD team decided that chemo before surgery was best for me (58 at the time). To be honest, I was unconvinced, to say the least. I wanted it removed and I wanted it removed now. I secretly thought they were just tossing me a bone to keep me busy as the surgical lists were full (public patient), but I went with the plan. I had 4 X AC followed by 12 X Paclitaxol and Herceptin which continued for almost a year. After the Paclitaxol (so six months of chemo), I had a two week break followed by the surgery...bilateral mastectomy with node clearance on the left and sentinal nodes on the right. On the left affected side, the post surgical pathology showed there was no active cancer found at all, just the empty, dead cancer beds where the 3 tumours had been. Two affected nodes on that side were also cancer free. Again they could see only the empty space where the cancer had been. For my circumstance, it was explained to me that the cancer in my breast and nodes would not kill me, but that any cells from them which may already have gone walk about and set up shop elsewhere, most certainly could. I chose to have the right removed as well...my choice and for a number of reasons. I was not given radiotherapy due to other pre existing health conditions, so there was no "mopping up" for me in that regard. Now on Letrezole for ten years, and at the moment NED (no evidence of disease).

My chemo starts next Monday. Time off etc. all organised. I am a teacher so staying away from nasty germs etc is very difficult in a classroom so as I have loads of sickleave my oncologist said, 'take the leave'. I agree with the above. I am still in la la land with my brain, on one level I am operating really well, getting things organised, buying in supplies I need etc and getting things done that I need done before chemo starts but on the other level, I have trouble remembering what the doctors say to me, so taking notes and/or having a friend with me when I go for the important meetings really is important. It took three goes before I understood about the tablets I need to take before chemo on Monday. Get any paperwork the doctor is handing out and sit quietly and read that later on. All the very best.

Hello @KayB55, After being diagnosed in February this year and having a different treatment path to yours, I am unable to comment on your query. As @youngdogmum said, people do 'mean well', but goodness at times I don't know if they have thought through what they are saying. I am a registered nurse and even other RN's have said some gobsmacking things, thinking they are being 'helpful'. If you can, try and surround yourself with supportive and helpful people, and know that all of us on this site, even though we do not 'know' each other, have your best interests at heart and there is always someone to 'talk' to.All the very best to you!

Many thanks. I see my GP this morning and we'll discuss this in detail. I have woken up second guessing myself which is really not like me but then this is the biggest decision I have ever faced. I have always been a bit anti technology (which is strange for a teacher) but it is wonderful to be able to talk with others like this without the 'personal' bit linked in. .

@KayB55 As @primek has said, whether chemo first is advisable depends on the type of cancer and the stage. Your oncologist is the best one to advise about how useful it is. My surgeon ordered chemo first; that was a shock, because the diagnosing doctor at the breast clinic had said I should have a mastectomy straight away. But a week later the oncologist then said there was no strong medical benefit in doing chemo first. She said because mine was Invasive Lobular Carcinoma and was very large (they thought it was about 8-9 cm but it turned out to be 12 cm): basically a huge spiderweb of tiny subtle cells that are very difficult to detect. She explained it to me as: lumps shrink better in response to chemo because the chemo hits the target more easily. In the face of that information, I chose to have surgery first. I was also influenced by my gut feeling: I didn't want to go into surgery weakened by chemo physically and psychologically. But that was me. Everyone is different. You just need to gather as much information as possible and follow your gut instinct. All the best. <3

Feelings of Panic | BCNA Online Network

Kactus
Member
6 years ago
Thanks for the advice. Recording the appointment is a good idea. I’m in Adelaide, I’ll add it to my profile x
arpie
Member
6 years ago
@KayB55 and @Kactus - also consider recording your meetings on the phone - most will agree to you doing this, as they know that a lot of what is said just doesn't sink in. I've gone back & listened to one of my meetings - and you just have them there as 'backup'.

What city/town do you live in? Other members may have more specific info re access to bits that may be of assistance to you. You can add it to your Profile.

All the best to both of you with your meetings & treatment plans xxx
KayB55
Member
6 years ago
Sister, Having lived in a bit of a cocoon for far too many years, I am becoming more and more aware of the complexity of lives. Here is hoping some good solid sleep and some moments of relaxation come your way soon. Regards
Kactus
Member
6 years ago
@Sister I am lucky my wonderful husband has been to all of my appointments so far and will be coming with me today.
I work in a school too @KayB55 I’m an SSO in a year 1 class mostly. I have 2 children of my own and have managed to explain things to them quite well I think and am holding it together on the surface. Of course they are my biggest worry. I have made a GP appointment for this afternoon though as I am finding it really hard to sleep the last couple of nights so hopefully they can give me something to help with that. I need to keep working while I can do a bit of sleep would be nice 😬. I have some sick leave but I have no idea how much I’ll need, how long is piece of string I guess?
Thanks for your well wishes, good luck to you too xxx
KayB55
Member
6 years ago
My chemo starts next Monday. Time off etc. all organised. I am a teacher so staying away from nasty germs etc is very difficult in a classroom so as I have loads of sickleave my oncologist said, 'take the leave'. I agree with the above. I am still in la la land with my brain, on one level I am operating really well, getting things organised, buying in supplies I need etc and getting things done that I need done before chemo starts but on the other level, I have trouble remembering what the doctors say to me, so taking notes and/or having a friend with me when I go for the important meetings really is important. It took three goes before I understood about the tablets I need to take before chemo on Monday. Get any paperwork the doctor is handing out and sit quietly and read that later on. All the very best.
Sister
Member
6 years ago
Make sure you take someone with you to appointments @Kactus if you can. So much of what we're told in the early days doesn't sink in.
Kactus
Member
6 years ago
How are you going @KayB55 ?
I found out yesterday I have breast cancer so am definitely feeling that panic. I think it is the invasive lobular type but a lot of the doctor’s words weren’t sinking in. I’m having staging scans tomorrow.
KayB55
Member
6 years ago
Irb_03 Thank you most sincerely, the support from others is so important. Chemo (or strawberries) as I am now calling it, starts next Monday, so game on!!!! Regards
lrb_03
Member
6 years ago
@KayB55, there are lots here now who are having, or have had neoadjuvant chemo. When I was starting mine 4years ago and posted a question about neoadjuvant chemo, I think I got a grand total of 3 responses. I felt so isolated and alone. I was "lucky". A couple of weeks later, as I was waiting for chemo, a former colleague got out of the lift, there for her education session for neoadjuvant chemo. She was 2 cycles behind me, so we were able to support each other through it all.
With the increase in numbers having chemo first now, there will be no shortage of support.
Happy to answer questions any time

Take care
Giovanna_BCNA
Member
6 years ago
Hello @KayB55
Great that you are getting support from our online community, I have attached a link below with information regarding neo adjuvant chemotherapy that you may find helpful, all the best with your decision making.
https://www.bcna.org.au/understanding-breast-cancer/treatment/neoadjuvant-chemotherapy/