Hi , Im not triple negative but just wanted to say welcome to the group, and sorry you found yourself here but it's a very supportive place and has been a godsend for me since my diagnosis. It's very unusual not to have had lots of replays but I'm sure more people will post soon . Sadly its seems to have been very busy group recently with lots of newly diagnosed ladies! There are ver useful threads for advice on chemotherapy and radiotherapy always at the top of the page ,and there is a surgery chat as well with lots of advice. The awake thread usual has people posting as well. Take care xxxx
I am triple negative, I was diagnosed 15/7, the lump was thought to be 22mm at the time. I had neoadjuvant chemo 1/8 to 28/11. I was supposed to have a lumpectomy but the mri showed some additional shading, so on 19/12 I had a mastectomy and sentinel node biopsy. The nodes were all clear. I’m having 15 days of radiotherapy from Wednesday to guard against reoccurrence. But I am cancer free. My oncologist said that I was lucky to have the chemo as it is a full body treatment and if there have been any stray cells this is the best chance to get rid of them. I’ve worked pretty much right the way through treatment droppping to 3 days a week during chemo and then to 1 day following my mastectomy. I go back full time in March. If you have any questions drop me a message. Good luck
Oh my goodness. I hadn't expected anyone who responded to have had neoadjuvant chemo - but how good that you did and what a journey you have had. And yet you have kept working. I can't tell you how encouraging that feels to me right now.
I have a much smaller tumour (9mm) and have been struggling with the decision about whether or not to have chemo. Do you mind explaining to me what chemo regime you had? And do you mind if I add you as a forum friend?
Hi, I had 3 cycles of EC and 3 cycles of paclitaxol. My lump was 27 mm when the decided to do new adjuvant chemo. It was at my mid treatment scan when they looked back at the original that they saw extra shading that indicated the cancer could have been much bigger. I’ve been positive through this, I surprised myself.
I decided at the outset that whatever the professionals recommend I will go with as they have the experience. For example I had a mastectomy and now they want me to have radiotherapy and described it as a sledgehammer to crack a nut, but rather that than a regret later.
by all means add me as a forum friend I have a couple of forum friends that are now what’s app friends I’ve found that really supportive too. Feel free to ask anything you like if I can help I will.
You can have no idea how much your email has encouraged me.
My problem has been that the oncologist wouldn't make a recommendation about chemo and that absolutely threw me. I expect you know about the nhs PREDICT tool. That puts me in the 3%-5% range of benefit from chemo - (3% with just FEC or 5% with FEC + taxanes - like yours). I have had no idea how to start weighing up the pro/cons. I'm older than you (66) and beginning to feel my age in joints etc. And I've also used to have anxiety issues related to stress in my job. I'm so afraid of coming out with long-term side effects to body or mind.
Can you tell me about side effects. I know everyone is different but how was it? I'm a great crafter so concerned about neuropathy. Also I notice that you had EC rather than FEC. Did your oncologist mention that option at all?
I am also triple negative. I had a lumpectomy and sentinel node removed first. No spread to nodes. This was followed by chemo and radiotherapy recommended by my team as there are no extra drugs available to deter triple negative cancers returning. However the encouraging thought is that if they don't return in five years, they are much less likely too. My cancer was removed in Nov 2015. I am nearly there.......
In respect of chemo side effects.....I can't promise you an easy ride although as Holbox has shown you, it is increasingly possible to continue with previous routines.There has been a lot of progress even in the short time since I took it in spring 2016. Protocol can be personalized particularly if you start to show effects like neuropathy by reducing doses or giving low doses weekly. The important thing is not to ignore any symptoms which might be connected......painful feet and fingers, skin reddening, peeling skin, burning sensations. I am surprised your team don't offer more advice but I suppose every unit is different. I have been seen by either the oncologist, surgeon or radiology every three months so I know in Dec 2019 I had no cancer.
I wish you well with your treatment whatever you decide. It isn't easy to weigh keeping the cancer away with the possibility of neuropathy spoiling the things you like to do. I don't regret my decision but I have some permanent damage from the neuropathy so I can't pretend it can't happen.
Thank you so much for taking the time to respond and thank you also you for your answer, which will help me form the right questions to ask the experts. It's still very early days with my team, and we probably haven't worked out the right level of interaction yet.
I have sent you a friend request but please don't feel any pressure to accept it if you'd prefer not to.
As Lacomtekp says there are side effects and some get through them luckier than others. When I was on 3w EC - the day after my treatment to day 9 I felt sickly and tired. I was never sick though and the meds I was given kept the nausea at bay - I also got quite weepy the first week. I still managed to eat like a horse. From day 10 I felt much better and had some normality Til my next treatment. I listened to my body and rested the days before I had work. When I went on to taxol I wasn’t I’ll at all just tired, but this became worse as the treatment progressed - cumulative. After I finished treatment - almost straight away I started with peripheral neuropathy - it stayed with me for a good 3 weeks then I thought it had gone but it seems to be back again this week. it’s all about listening to your body and telling the professionals if meds are not helping as there are loads of alternatives xxx
