Hello, I feel so alone

Hi Kazzangnu sorry you find yourself on here. I was also worried when I was told my cancer was aggressive, but the consultant reassured me that a few weeks doesn't make a difference so I hope that reassures you. My lump was quite big so I had chemo to shrink it before surgery, so I am sorry I do not know how they decide if you need chemo after, but there are some lovely folks in the group with lots of experience and I am sure someone will be along soon to share their experience.

I just wanted to say hi and to let you know that we are all here for you. Also, if you just feel like chatting, there's a great thread called Awake, and you'll often find people on the at all times of the day and night.  Best Wishes 

Hi there,  and welcome to the forum. I'm sure a few others will reply, but I thought that I'd answer the question about chemo. 

You've written that your cancer is grade three, which is a faster growing type,  so a factor for having chemotherapy. As it's oestrogen positive you're likely to have 3-4 sessions of EC chemo then paclitaxel,  but oncologists sometimes use docetaxel  instead of paclitaxel. The other factor for chemo is that it's in your nodes.  Some hospitals will run a test if its only in one or two nodes and the cancer is grade one or two, others (like mine) push for chemo anyway. Have they told you the size and number of nodes positive seen on the scans? This can change.  I was told I had clear nodes (but one was positive after surgery) and that it was grade two,  but it was a mix of mostly grade two with some grade one as well.  

I don't know your age,  but  after surgery and chemo you'll also be given a hormone blocker.  It could be tamoxifen or something like letrozole, which reduces the amount of oestrogen because your cancer uses oestrogen positive. 

It's a lot to get your head around,  and waiting is stressful! Have they given you any CT scans or MRI's yet? When they found that I'd a positive node they gave me those as well as a nuclear bone scan.  They are completely routine,  but when it's all new and scary it doesn't help the stress, but they are just part  of finding the best treatment based on knowing as much as possible.

Good luck,  and try to find ways to relax (reading trash novels,  walking,  cooking,  tv shows,  anything that takes your mind of it!) We all understand here,  as we're all to a greater or lesser extent in the same boat,  and have been through the rollercoaster if testing, surgery and medications.  Xx

Hi there,  welcome to the group.  I’m relatively new too and like yourself have grade 3, single receptor positive ;( Oestrogen is a 5 out of 8 so although I’ll be offered hormone treatments they may not be as responsive).  I’m currently waiting for appointment with onco to hear treatment plan having had surgery at end of March…I know it consists of chemo/radiotherapy.  Happy to chat xx 

Hi, thanks for replying. So far I have only had mammogram, ultrasound and biopsy. They only tested one node and the main tumour which was positive. I have only seen consultant once when he told me I had cancer, the grade etc and said I would be having surgery.should I push for an MRI and CT scan? I have my pre-op tests on Wednesday before surgery on 4th May. My worry is that it took 2 weeks to get doctors appt, 2 weeks for mammogram  ultrasound & biopsy, 2 weeks to get results and now another 6 weeks until surgery. That is 12 weeks that this cancer could be growing and spreading

Thanks for responding. My oestrogen was 8/8 and tumour graded as 3 plus spread to lymph nodes. How long did you wait between diagnosis and surgery? Did you have lymph node excision too? Can you give me any advice about the surgery. I have bought some post op bras but is there anything else I should be aware of. I'm scared that it has been 12 weeks from discovering lump to surgery that it may have spread. I feel so helpless

Hi there,   I waited four weeks from being diagnosed until having surgery (it was originally going to be a longer wait, but there was a cancellation - so I had to rush to get PCR and pre op/radioactive injection done the day before surgery) and I honestly hated that wait. I wanted it out as soon as possible and also convinced myself it was growing spreading.  Whilst having ultrasound to add marker on skin for the surgeon, the radiologist checked size of lump and it was exactly the same size as when I was first referred to breast clinic - so that was 7 weeks between.

I had breast conserving surgery;  so the lump (25mm) and an area of clear margins were removed.  I also had three sentinel nodes removed; following radioactive injection and blue dye to highlight which ones.  Out of the three removed one had cancer cells in.

What surgery are you having???  I found open front tops/hoodies a must.  I bought a couple of front opening bras as you sleep in them - my fave was https://www.theyahealthcare.com/products/fleur-bamboo-non-wired-comfort-bra-in-black

Expensive but it really helped as straps unhook so didn’t have to keep taking it off to be examined, it’s really comfy.  My other is from sainsburys which I wear whilst washing my fave,  I’ve also been wearing my front fastening sports bras - although these aren’t as comfy. Im living in sports leggings and joggers as easy to get on.

I also found magic gel breast ice/heat pads really helpful as you can have them hot or cold.  Early on I found the cold one helped with the initial healing pain,  but now I have them heated to help soothe pain where a tiny bit of fluid has collected by the end of the day - they really help it’s disperse.  

I think everyone struggles with waiting;  it seems worst as some Trusts get treatment started quicker, whereas others have quite a backlog.  You’ve just got to try to remember at MDT they’ve discussed the best treatment for you and they have timescales to work to, remembering this helped me.  I was also distracted with work and keeping myself busy.  Hope this helps,  any more questions please ask xxx

1. Hello Kazzangnu, I too was diagnosed with grade 3 ER+PR+ Her2 neg, I was told last September I'd have surgery and radiotherapy,  after surgery I was told that because of the grade 3 ,my age ER+ and lump size that I would have a biopsy sent to America for an oncotype DX score test, it was to see if I  really did need chemo as it wasn't in the nodes. . My score came back high at 31 and was told I'd benefit greatly from chemo as I have a high recurrence score and it could spread..so if its already in the nodes you'll have chemo and radiotherapy , I had 3 EC chemo and 3 Docetaxel  awaiting appointment now for radiotherapy.. There's so much for you both to take in, my husband was the same at the start until he really new what was happening, he's been very supportive throughout, just take one appointment at a time and digest what they tell you. I had my surgery on the 18th of october,  went for my follow-up appointment 10 days later and was told I had to go back in for further surgery as they hadn't got clear margins. This is something they explained before surgery and happens alot. Chemo then started on the 23rd December and finished on the 14th April.  You will get through this, you'll need plenty of rest and TLC, it's not a nice journey to go through but you can do it, if that's really making you uneasy about one single factor then ask lots of questions.  Good luck big hugs xx