Breast Cancer Now Forum

Hi Gracemak, just wanted to say hi and send a virtual hug to you and all the lovely people on here. I went through similar in 2019, tnbc, brca 1 positive, chemo, double mastectomy with immediate implant recon and rads. If you want to ask anything please ask away. Happy to tell you I am doing really well and really pleased with how everything looks.   The recovery isn’t too bad, drains are a bit pesky but they aren’t in very long and they didn’t hurt. Just lots of rest and do the exercises 🙂 I just had my ovaries removed a few weeks ago as a prophylactic surgery.  That was a quick procedure and feeling almost back to normal after only a few weeks. It’s a journey and not a wanted one but take each day at a time and be kind to yourself xx ... View more

Hi Lizzie Just checking into see how you are feeling after your first chemo?  Becks xx ... View more

Hi LTrun You are having such a tough time of it right now lovely but it will get better. I wanted to reassure you that it does get better.  i was diagnosed last year at 46 with tnbc and today is my one year to the day since starting chemo. Chemo is doable, it makes you feel rough at times and if I could compare to anything it’s like a bloody awful hangover sometimes. I got some side effects such as dodgy feet and sore mouth but there’s something to treat all of that. I lost a couple of toe nails, wasn’t painful and oddly there was a nail underneath too. I finished chemo in May and my nails are back to normal and have been since Christmas. One thing I will say is that the steroids with chemo will disrupt your sleep, don’t lay in bed trying to sleep as those were the worse times for my mind wandering , get a cosy onesie, get up, watch Netflix etc and take your mind off it.  I used to call my sister in Atlanta too as she was up with the time difference.  Everyone has a different experience with chemo but it’s doable and very effective with tnbc, the surgery is doable too (I had a double mastectomy with recon) . I also had rads and that was ok too.   I do have a genetic fault and currently waiting on surgery for my ovaries so I can finish this journey I’ve been on.  I am back at work and on 3 monthly check ups now, seems like last year was a bit of a blur but honestly you tick each treatment off, and find it does go quickly.  I wish all of you lovely ladies well, and if you want to ask anything please do. Becks xxxx ... View more

Hi Butterfly10   just wanted to say well done for the rads and here’s a coincidence.  I finished rads today in Leeds and I also am TN. It’s a great feeling to have finished x Becks ... View more

Hi Cheza i just wanted reach out to you as I can fully understand how you are feeling and with everything thrown at you all at once it’s a scary place. You will be caught up a few weeks of scans appts. It does seem standard so try not to worry, I had them all too. Back in Jan I was diagnosed with tnbc and also had genetic testing. I had the 6 rounds of chemo and managed to work at home some of the time, it did and still does help keep the mind from wandering, the chemo is very doable,  your friends and family will get you through it and you will learn to understand which days are your good or bad days on each cycle. However you will feel settled when you start, it’s odd but the panic and worry does ease when you start treatment. The oncologist will run through all the possible side effects of chemo and it’s does scare you but keep it in your mind that they have to list every possibility even if it’s one in a million.  My gene test came back with an alteration so I did make that informed decision about surgery and found it all ok, just taking a day at a time.  I am now three days off finishing radiotherapy and feeling great. It is a bit of a whirlwind but you are looked after so well and your support network will be invaluable to you.  As everyone says please stay off google as much as you can. I did go there a few times and seriously it’s full of nonsense.  Remember there are no stats for survival rates today as that’s us! Good luck for Monday xx Becks xx ... View more

Hi Astra its the brand ‘Simple’ in the green packets. I use them to wipe the pen off only. I use aveeno body wash for showers and find that has been no problem to my skin so far. I am on 8 of 15 at the moment. Thanks Becks x ... View more

Hi Everyone, hope all is going well with the rads. I had no.7 today, I was delayed a couple of days due to my thyroid going crazy. Seems chemo left me another gift!   Radiotherapy is tiring, I honestly can’t stay awake past 9! Its over so quick though so can’t complain. A little tip for everyone when they draw on you  a Simple wipe  brings it off with no rubbing at all. I have lines on me everyday so helps not to try and scrub it off 😊 It’s Friday and time for a well earned glass of wine.  Have a good one everyone xx ... View more

Hi Everyone, it’s great everyone is getting dates now, feels so much better when you know what’s happening. You can see the end of this rotten path we seem to be on.  Has anyone been asked to hold their breath at the planning appt? I had mine yesterday and I couldn’t do it apparently I had air leakage from my nose 😂  I am still a bit weak at the minute after chemo and 6 hour op plus asthmatic so I guess it’s not surprising.  20 seconds is quite a long time! i am a bit worried though that I can’t do it although at least it’s my right side that the rads are on. Anyone  else not able to do it. Or any tips if you did as I might get another try?  Hope everyone’s coping well with the rads. And those that are starting soon.. good luck!  Mel you must be almost finished! What cream have you used if any?   Big hugs to everyone  Becks xx ... View more

Hi Mel Thats great you are already on no. 10, does it feel like it’s going fast? I started chemo in Feb but it seemed to go quickly, ie the time came around for the next dose very quickly. Most probably because I didn’t want it to! Like everyone just want this bit over ASAP.  I hope the rest of your rads go well and are over quickly.  Becks x ... View more

Hi Everyone I have my planning appt next Thursday and apparently will be have treatment from 10th to 30th Sept.  How far is everyone’s hospital? Mine is about an hour in traffic and just wondering if I can drive myself. Already rather tired after chemo and op 5 weeks ago so wondering if it’s doable. Good luck to everyone with treatment xx ... View more

Hi Littlenoddy sorry you have found yourself on here but welcome to the forum and I am sure you will find it a great source of comfort and information as I have so far. i was diagnosed in Jan 19 with tnbc grade 3. I know you have scans but don’t be scared as they seem to be commonplace to have them. I had an mri and ct scan. They are done quickly, I won’t say don’t be scared as I was scared of everything after diagnosis  but it’s good to have them so the oncologist has a clear starting point for treatment.  Please don’t read the stuff all over google about tnbc, a lot it so out of date and will scare you silly.  You have arrived here so you are following a good path for information  I started treatment on the 15th Feb, I have 6 rounds of chemo, 3 weeks apart, then surgery then possibly rads. I have had my first treatment and my second is this Friday. I am feeling absolutely fine. The surgery and rads decisions are made further into my chemo.  What I can say is emotionally you are at a really hard time and it gets so much better once you have all the information and a treatment plan. You will have those dark thoughts which are so normal especially as we have children,  but try and distract yourself from them. Waiting for the appointments is so tough, I found surrounding myself with friends and family and talking to them about it made it easier. Watching nonsense on tv, listening to music helps to fill time.  Best of luck with the scans, they are over quickly and it’s another step done. Will be thinking about you and let us know how you get on  Becksann xx     ... View more

Sending big hugs MBJ, hope you feel better really soon. Xx ... View more

Hi Seaside Sar   Thanks for the advice re wig, I do want it to look like me. The Macmillan centre I am being treated at has a salon that comes in and does it all for you. I get £70 towards whatever I pick or something like that. I have looked online but really not sure as the ones I like are £500 plus which is far too much so think I’ll wait for my appt before paying out a small fortune. Got some lovely little beanies from amazon to wear with stars and sparkles on in the meantime  Was gutted about the cold cap as thought I was doing fine after the first 90 mins but then started reacting badly and feeling sick after that so had to take it off.  One of my friends said she lost around 50% of her hair in the first cycle with the cold cap but still managed to disguise with hairpieces and the shake on fibres. She did say that her hair grew back so quickly though with it as she had regrowth before finishing the chemo! It’s  definitely worth persevering with it. Definitely through the worst part now, started work again yesterday, just a few hours from home but the distraction was good. Just the sore mouth to get rid of, it’s not stopping me eating so not too bad!  Have you had your second cycle yet?      ... View more

Hi Everyone Wanted to say hello and send big hugs to everyone. I joined and chatted a week or so ago and then it logged me out after I started chemo on the 15th. Finally remembered my password 😉 How is everyone doing with the beastie side effects? I am just on with the sore mouth at the minute, manuka honey, pineapple juice and difflam later and it’s getting better!  Didnt get on with the cold cap, managed it for two hours and then we fell out so I parted company with it. Can anyone help with wig advice? I have an appointment on Wednesday next week with nhs but not sure what to expect, what to order. Where to start to be honest, any advice would be amazing.  I am on EC for 3 cycles and then docetaxel/carboplatin for 3 cycles. EC has been okish from my first cycle once the fuzzy headachy head clears as that was the tricky bit. Day 5 and 6 definitely the worse so far but I am only on the first cycle. xx     ... View more

Hi Susie B I started chemo last Friday, I have 6 cycles planned, then surgery and then it’s decided about rads. i have gone with the surgeon and oncologist recommendation. Its the same plan to shrink the tumour which I understand, well as much as you can understand when everything is being said to you.  Have you started chemo yet and how are you feeling? x ... View more

Hi Sonic73 Yes it was chemo a couple of weeks after my Oncologist as I had to wait for other results after initial non hormone receptive diagnosis. The heart scan is usually for before you start the chemo, I had mine on Thursday before my info session and started Friday so that shouldn’t hold anything up. Mine was just the ecg so a few stickers and it’s done.  I do feel for you as it does get better, the bit you are at now is the hardest. Stay strong with your thoughts ( everyone says that to you but it is the best advice) and everything will start happening pretty soon xx   ... View more

Hi Sonic73 I am also triple negative and was diagnosed a couple of weeks ago it’s a shock but that is with any BC diagnosis. I started chemo on Friday and doing well and feeling positive.  My Oncologist said to me it’s no more difficult to treat when I asked him. He’s the expert and I really trust him. I don’t really think about the tnbc name  so much now it’s a case of getting on with treatment and getting rid of it. I hope you are ok and big hugs to you. You are in the difficult time between diagnosis and starting treatment. Once you get your treatment plan it becomes easier to deal with and you feel like you have a bit of control back in your life  xx ... View more

Hi Ally2019 I completely understand the emotional side with getting your treatment plan, it’s really tough and I hope you feel a bit better about it now.  I start this Friday and you start Monday, very close to each other. I understand the nervous feelings too, I wake up every morning and for that few seconds it’s not there. I am really scared about Friday, just went and bought a lovely soft blanket to take with me. Shopping for bits and pieces is strangely calming. Then again I love shopping so it’s probably just switching off for a bit.  You absolutely can do this, us girls are made of strong stuff.  Take care of yourself and good luck for Monday. xx   ... View more

Hi Ally2019 Thank you and I hope your day went well too xx How are you feeling today?  xx ... View more

Hi MBJ Glad to hear you are recovering well and I hope the swelling and pain eases for you very soon. You have the first stage of treatment in the bag now so it can only get better for you xx I have been told I will defo have a masectomy and at the moment recon but have to see how chemo goes and if I need radiotherapy. Also am having a gene test shortly so I can make the decision before surgery if I have a double.  We need to be good at filing with all this information!  I still find it strange that treatment will take me right through to late summer at the earliest. It seems so long away! When is your chemo starting? xx   ... View more