Breast cancer

Hi Raf44, Welcome to the site that no-one really wants to join, but you will find a wealth of experiences here and some very good support.You will still be in shock to some extent and this is a safe place to talk ,rant or shout. or even join in the banter (yes really) I have found the group to be very supportive and a great source of those little details/tips that make all the difference on this roller coaster of a ride.First and foremost the treatment for breast cancer these days is very successful despite what you have read. Not always the nicest to get through but somehow copable with. But like the rest of us you will find an inner strength you didn't know you had and get through it. I can't help with the chemo but there is a chemo thread each month on the chat section, sorry not good at the tech. Please don't look at Dr Google ,often out of date or just plain wrong . I would  suggest Macmillan or Breast Cancer Care -I think both have free helplines and can be trusted.You will get through this and come out the other side even stronger (see my profile if you wish by clicking on my name. Sending big but gentle hugs x

Thanks Kwissy, I always google everything and it doesnt really help knowing too much details. I try to stop this. I hope I can start my treatment soon. At least then I know my fight has started.  Take care and senfing you a big hug too. Xx

Hi Raf44

If it helps, like many others I had very light side effects from the EC chemo I was on, felt rough for a week after each session, not sick or nauseous just under the weather....there are as many ladies like me as those who are sick I reckon so don't take it for granted that you'll be floored by your side effects.  Also the chemo units give you all the help, support & drugs to try and combat the main side effects.  Really 'bad' side effects are in the minority but as they're what those who haven't gone through it have heard about its those that makes the prospect of chemo more scary.

Even when I did have 'less pleasant' side effects on paclitaxel I was able to review (and change) my treatment with oncologist so do make a noise if you're suffering in any way as there's lots that can be done.

I also didn't have any risk factors, it was quite a shock but I quickly accepted it (just the sort of person I am) and got on with it.  I made the most of the time by chatting to others and helping them when i was able, hopefully you'll find your own unique way of coping and getting on with it...and I promise you will look back and realise it wasn't so bad as your mind builds it up to be.

If you think it will help actually speaking to someone who has been through what you are about to go through then Breast Cancer Now's (a charity) 'someone like me' may help - I used it and it was invaluable so that I knew what I could expect.

Good luck with treatment all the same.

Sam

Hi Sam,

Thanks a lot. Your message gave me more hope. Very appreciate this. Xx

Hi Raf44

Just giving you another warm hello.

yes, I'm sure you're in shock - it's difficult to take in, really, isn't it? Sadly, having no risk factors puts you in very good company here - there are lots of us here with all types of backgrounds and lifestyles, despite what the media tell us. so please don't think it's anything you did or didn't do - unfortunately, it's very random,

But as the others have said - the good news is that it's very treatable with good outcomes. My cancer was stage 2, grade 3. - 5cm main tumour with 2 more "satellite" tumours and spread to my lymph nodes. My treatment finished 4 years ago and I am currently cancer-free.

Although grade 3 is more likely to come back, they give you more treatment to try to counteract that - to level up the playing field. 

Lots of people cope really well with chemo - the important thing is to let your team know about any side effects - they have drugs for everything and will try to keep you feeling well.

Here's a link to the January chemo thread - there'll be a new one for February. 

Hope you're finding your way around the site OK - just shout if you need a hand with anything

R

Hi Ronstar,

What a great community! Thanks a lot for sharing your experience. That has given me more hope. I will remain positive and I will be strong. Xx

Hi Raf44,

I was diagnosed with invasive ductal carcinoma (triple negative) on December 15th after finding a lump a week earlier. Treatment started with chemotherapy last Monday. I'm on weekly for 9 weeks (2nd one today), then 3 cycles 3 weekly. It is very scary hearing those dreaded words and like you I had no predisposing factors. After the initial shock I picked myself up, forgot I even had cancer over Christmas, and am trying to lead a normal life as possible. So far I have had very little in way of side effects but I'm still early on in my treatment pathway. I have a good balanced diet, am fit and active and have been taking vitamins for months, so maybe that has helped, but who knows. I also drink plenty of water to help flush the chemo through.

I googled too and regret it as there are so many contradictory and scary stories out there. I found the worse wait was waiting for the results of the CT scan to assess for any spread. Due to my job I was lucky enough to have this done the day after diagnosis with the report done same day and fortunately no spread to liver, lungs and bone. 

Take each day as it comes. Everyone is different. Rest when you need to but if you feel like doing something a bit more energetic then do it. 

Hope this helps and good luck with your treatment X

ronstar  Hi Ronstar, I'm a newbie and have mostly been on the AWAKE thread.  I occasionally respond to other newbies to try and help them and have come across your posts a few times.  I have found your responses really reassuring and comforting.

 Having gone through what you have I wonder if you know how the doctors/surgeons determine whether the cancer has spread out of the lymph nodes and into another part of the body.    

I'm had surgery a couple of days ago and am waiting to hear back on whether they got it all out, whether they got clear margins and whether it had spread to the lymph nodes.

I'm really worried about what it means if it has spread to lymph nodes and if it has how do they work out if it has spread out of the lymph nodes and is growing in another area of the body.

Hope it's ok to message you directly.

Thanks

Hi, thanks for your reply. It gives me more hope that your treatment started quickly, so hopefully mine will start soon, too. I keep thinking if they start it late it may spread further. Thanks a lot. Xx

Hi GodWilling

So sorry to have taken so long to respond - busy couple of days at work.

I hope you're recovering well from the surgery - I know it's an anxious time waiting for results.

When the pathology people examine the tissue that's removed, they look for signs that the cancer has spread by looking for cancer cells in the blood vessels and lymph vessels. They slice the tissue up into many thin sections and look at every one for the size of the margins and for cancer cells in any other area. I knew that mine had spread to my lymph nodes before my mastectomy. I had a sentinel node biopsy first which came back positive as the original plan was neoadjuvant chemo to shrink the tumour and have a lumpectomy. However, an MRI found another small tumour so my surgeon insisted on mastectomy and complete node clearance. Once the results came back, they found yet another small tumour. As I had already had chemo, they couldn't be 100% sure how many nodes had cancer but only found evidence of it in 3. Basically, after chemo they examine the lymph nodes for dead cancerous tissue - if they find it, then the cancer must have been present, if they don't - it may or may not have been present. My results also showed signs of "vascular invasion" which means they found evidence of it in my blood vessels.

Your lymph nodes are designed to act as a kind of sieve, so finding cancer there doesn't always mean it has spread to the rest of the body - sometimes it means the nodes did their job and caught it. You have different levels of lymph nodes and the sentinel nodes are the first line of defence. Sometimes they find it in the sentinel nodes but not any further.

It can be difficult for them to know if it's anywhere else - an MRI will tend to show up "hotspots" but they show up everything - so it's not a particularly good tool for looking for spread to an unknown place - a bit like looking for a needle in a haystack - or maybe a bit of hay in a haystack.

Chemo is the option for safeguarding against any spread - it treats the whole body so that if it is somewhere else, there's every chance the chemo will kill it. Your team will look at all the evidence and decide whether they think there is a chance it has spread - then they consider chemo. Chemo comes with it's own risks so they don't always recommend it - you may have seen people on here talking about the oncotype test - they often use it to weigh up whether chemo is likely to give a worthwhile benefit.

There's every possibility that my cancer had been there a fair old while - I've always had a lot of cysts in my breasts and had been to the breast clinic for them before. When they found the tumour, it was beneath a cluster of cysts which is probably why I didn't notice it earlier. So there was plenty of time for my cancer to have made an escape.

Hopefully, your nodes will come back negative, but it isn't all doom and gloom if they don't - it just means more treatment. I was 47 when I was diagnosed and my consultant told me they were trying to buy me 53 years. I intend to track him down and invite him to my 100th birthday! 

R