Hey! How is everyone doing?
I’m joining your club @mumsy, had my pathology report today, 4mm of residual cancer… The good (very good) news is that the margins are clear and no cancer found in the lymph nodes
I’m trying to repeat to myself that it’s a very good results but I can’t stop feeling upset. I’ll have 3 weeks of radiation and then 6 months of capecitabin… It’s like a never ending journey.
Also, have you considered not taking capecitabin? The surgeon confirmed that they do it “just in case” and it’s possible that we don’t have any cancer left in the body and the pills might not be needed. But then there is a recurrence risk and I’m not sure I’m ready to take it…a lot to wrap my mind around.
Hey @chita . Equally pleased and sorry to hear your news. Good that your margins and ln were clear but sorry about the radio and cape. It feels like 2 steps forward one step back and it’s quite exhausting. I’ve found the competing emotions one of the hardest thing to manage. On the one hand you know you should be pleased with the results but in the other you’re stil in the middle of a long and frightening and uncertain journey so it’s hard to always be positive. That’s me anyway! Maybe you manage it better
I had to stop the cape because my hands and feet got so bad. Luckily I was only 2 days away from my week off. My onco has reduced the dose so we’ll see what happens next cycle. I start up again on Thursday and they’re feeling much better. 6 cycles to go
My oncologist was actually very rude about my weight when I saw him last week. I have put on an extraordinary amount: coming off HRT, developing thyroid issues as a result of immunotherapy, less physical activity and comfort eating have all contributed. At several points during chemo I talked about losing weight and he and the BCNs told me not to so I didn’t. Last week he said I’m getting bad hand-foot because I’m on a higher dose of cape, and that’s because ‘you’re just too big’ and then laughed. I was so upset I cried the whole 30min drive back from hospital. Luckily I had counselling that morning and she helped me work through it. I’m so self conscious about my appearance now that his words really lacked tact.
I hadn’t considered not taking it. Tbh I just accept whatever he says and go along with it. I would hate to have a recurrence and would always wonder if the cape would have made a difference. At least this way I’ve done everything possible!
Still struggling to get used to my scar. I don’t like to see or touch it. I wonder how long it takes to get used to… How’s your seroma and wound? I had mine drained 3 times in 6ish weeks. It’s getting better but I’ve been left with a bulge at the end of the scar which I loathe. I’ll leave it for some time to see if it settles but if it doesn’t I’ll ask to have it removed. I hate it so much I just can’t imagine living with it forever.
I’m off to Maggie’s today for a breast cancer support group. It’s helpful to be with others going through it. Have you tried anything like that?
Thank you @mumsy! It feels like that indeed! I had some rough days when I was processing the news (still do) but years in therapy (and possibly antidepressants ) equipped me with good tools, so now I feel better about it all.
Oh no, so sorry to hear about the hand-foot syndrome Do you have numbness or is it swelling and pain? I am quite afraid of it, I had neuropathy for some days during chemo, and it freaked me out. Great that they can reduce the dose without an impact. Even though now, when the tumor is out, it’s quite hard to measure the effectiveness of the pills I guess…Something to ask my oncologist about.
Wow, that’s such a horrible thing to say about someone’s weight! Incredibly insensitive.
I think some doctors become so professionally detached that they start seeing patients as problems to fix/cure, rather than real people with emotions. I don’t know how people go through this without counselling/therapy, it’s so emotionally taxing…I hope you feel better now, and please don’t let those comments get to you, they have 0 idea what you have been going through
Yeah, it’s tough with the scar, mine is constantly under the tape now, so I rarely see it. The scar from the port incision bothers me more right now, it’s much more visible and not very neat And they will have to cut it again to remove the port, I still have it.
My seroma has finally disappeared! I think having a drainage for 4 days helped + I did all the stretching exercises they gave me, did a self-massage, and I am still wearing a post-surgery bra. Did they consider inserting you a drain for some time? At least it’s less risky when it comes to infections but of course a bit of a hassle to walk around with that bag with lymph
I went to a “Look good feel better” workshop and another one called “Cancer in the middle of life” and that was very nice. Talking to others in the same situation helps indeed, and I could finally feel normal there, even just not being the only (bald) person with cancer in the room, if you know what I mean
Hi everyone im now a part of the TN club im stage 2 grade 3
Very scared so much information first oncology meeting today its going to be 5 months of chemo then surgery and immunotherapy or radiation
Im worried my body cant handle the side effects it all seems
So unreal just now Hoping first chemo be 4th September
It’s a very scary journey indeed but you’ll be surprised how much you can handle you’ve got this!
Take one day at a time, it’s so much easier that way. What helped me is to join a monthly chemo starters group to go through this with other women in real time so to say.
Time will pass very quickly!
I dont really know i will be getting carboplatin/pactlitoxel EC +pembro i dont know in which order though . Unfortunately all my bottom teeth will be extracted in 27th aug due to v low bone density so plan for chemo start was 4th sept but i will be pushing it back another week to give gums etc time to heal .thank you @chita for your reply i hope your doing as well as you can be🥰 everything looks so scary and daunting all the different names of chemo and some side effects just seem like un doable x
Welcome @winston2 and sorry you’re on the TN journey. Take things one day at a time and won’t look too far ahead. You’ll be surprised at how much you can get through. I agree with @chita . Joining one of the monthly chemo starter groups is a great way to make you feel less alone. I didn’t but wish I had.
I’m on holiday at the moment and struggling with my feet. It’s really bringing me down but I’m trying so hard not to let it spoil our time away. I’m also exhausted. I’m only halfway through my 3rd cycle of cape and no idea how I’m supposed to make it through 8
Having a bit of a rough day so excuse the down message.
Sorry to hear your having a rough day im sure i will
Have plenty of them try as best you can to enjoy the rest
Of your holiday and your feet give you a break
Sorry to hear that you are not at best and can’t enjoy vacation…I hope it became better by now
I’ll start capecitabin in October (4 weeks after radiotherapy) and my oncologist was not sure if I can travel yet. She said they first need to see how low my immune system gets and it’ll be clear only after the first cycle. So noe I’m thinking of maybe squeezing in some vacation in between radio and the pills. I haven’t been anywhere this year, was kind of tied to the hospital the last 8 months
Hi gerry i was diagnosed in april tumour was 5cm and in nearby lymphnodes within 2 weeks it had grew to over 7cm i started chemo every 3 weeks for 9 weeks after 2nd session my tumour shrunk by half and dissolved from 2 lymph nodes i am on my weekly chemo 5 weeks of that i was due my 3rd session today but couldnt get it i have covid chemo is not that bad symptoms are bearable
I have found this thread super helpful and really appreciate everyone who is willing to share their experience, it is so helpful.
I am due to start chemo next week. The proposed treatment is:
Carboplatin & Paclitaxel (12 cycles) + Pembrolizumab.
After this I will received Epirubicin + Cyclophosphamide (4 cycles) + Pembrolizumab.
I will then have surgery. After surgery I will have radiotherapy and Pembrolizumab.
I have had a good read through the thread and all the experiences but have some specific questions if that is OK.
Did anyone on here use the cold cap to help retain their hair?
Did anyone suffer from neuropathy or use the gloves etc to help relieve this.
Did the side effects start straight away or was it gradual or varies?
Essentially any tips to share will be gratefully received and anything I can do to prepare in advance of starting next week. Many thanks
Hi Cathie2
I was diagnosed in March this year and have had the same treatment regime as you. I’ve just finished my chemo last week and have now got a date for my surgery at the end of October.
I have used the cold cap throughout and I have kept my hair albeit alot thinner that it used to be. It only really started to really thin when I started EC and although it felt like I was losing so much, my friends couldn’t tell at all. There’s a great website called Cancerhaircare who I have found so useful, also the Paxman cold cap website is good as well. It is worth well cold capping and I am so glad I did it as my appearance hasn’t changed that much, especially good for my teenage boys.
I was really concerned about neuropathy (I’m a physio and deal with this in my working day) but I have been lucky and have not experienced anything but the odd twinge here and there. I have noticed I’m more clumsy even from my perimenopausal pre treatment state. I bought some gloves from Amazon even, but found I didn’t use them as it would have been too much with the cold cap as well, you do get very cold suddenly!
The meds they give do such an amazing job for managing the side effects of the chemo, and they will monitor you each week for any new side effects.
I hope this is helpful please ask any more questions, I have found the uncertainty the worse thing and actually once I started and knew what was going on, I could deal with it.
That is really great to hear and well done on finishing your chemo.
How did you find the side effects?
I am glad you had no issues with the neuropathy. That is reassuring, although I know these things affect people differently it is always great to hear the positives.
I agree the uncertainty is the worst and now I just want to get started.
I wish you the best for your surgery and hope you are in the best shape ahead of that.
Hi there yes it is so individual as to what side effects you experience. I found it made some pre existing minor issues worse but letting the chemo team know meant they have always found a way to manage them.
I have tried to take one day,one week at a time and it’s amazing how the treatments get crossed off the calendar!
I don’t know whether you are able but I was able to stop work as soon as I needed and really just concentrated on what is best for me - I’ve read a lot, did some great binge watching but also when I felt able I got out and walked the dog even if just for half an hour, getting outside helps so much! We even managed to go camping in July at the end of the pac/carb regime I just took it easy and did what I could. I have said to friends it’s like a bad hangover (one when you really shouldn’t have started that second bottle of wine) and similarly each day you feel abit better. The weekly ones I took it easy for the first couple of days and then was able to get a few days of feeling ok before the next.
A great tip one friend gave me was to get a silk pillowcase great for sore scalp/head and it kept me cool when I got night sweats.
There’s a great book A survivors guide to TNBC by Michele Solak -Edwsrds which I have found so useful x
Hi, how is everyone doing? I’m starting the first Capecitabin cycle , just took the first dose…feeling a bit anxious and sad at the same time. It’s been almost five months since my last “regular” chemo session, and by this time I feel almost normal again. I have a lot of hair, I can train on the same level as before, and I just feel normal, and starting Capecitabin feels like starting this whole chemo process again, and I didn’t expect this, but I feel quite emotional about it, and I feel like I need to process this.
How are those of you who are taking it doing? How is it going for you? I really hope to be able to maintain a normal life while taking it.
Its good to see this chat threat has continued. Sorry that you have had to walk this road but i am glad you found this thread as there are many paths portrayed here. I am sending you positive vibes.
I am 22 months post diagnosis, 6 months post second mastectomy, 12 months post radio, 8 months post pembro and i just had my third dose of zolandronic acid. I am not on any follow up chemo.
My 18 month (post diagnosis) ct was clear and my thyroid activity is now back to normal. I still do stretching exercises every day or left side shoulder (full axilla removed) gets stiff and i massage my scars everyday or they tighten. I work full time and i feel fatigued more than i should on days where i am physically active at work but thats about it. Chemo pushed me through the menopause so i take joint supplements but life is very good. I am actually living life flat which isnt something i thought i would do but who and how i am post cancer is different to how i was pre cancer, and well not wearing a bra is absolutely brilliant!.
So there is light at the end of the tunnel ladies just keep doing what you are doing, moment by moment, day by day, and you will get there!
@cathie2 my top tip on cold capping is eat something during the first 20 mins. Its helps with the brain freeze. I would have a small bag of popcorn.
I’m just about to start cycle 7 of 8 of capecitabine. I started chemo on November 1st last year and had a mastectomy in May. It’s been a long road.
I’m lucky that my onco orders pist treatment scans, so I’ll have a CT scan end November, and results on December 12. The wait is scary but I’m cautiously hopeful.
My main fear is of recurrence down the line. I’m watching one of Breast Cancer Now’s webinars on fear of recurrence tonight. I’d really recommend them to anyone who hasn’t seen them yet. You can ask about Speakers Live and that’ll get you on the list to receive invites to the webinars.
I’m also still struggling to come to terms with being flat on one side. I have decided not to have recon but I don’t know how to embrace my new shape. It just makes me feel very sad.
Hi @anna_x51 so lovely to hear from you. Like you I am so pleased this thread has continued and hope it has helped those of you who are currently on the tnbc journey with all it’s ups and downs.
I was diagnosed Dec 2023, completed IV chemo July 24, had SMX Sept 24, completed radiotherapy Nov 24, completed oral chemo 16th April 2025. . Since then I have been busy enjoying my life, spending time with dear friends and family. Going out for numerous meals and not gorgetting loving my daily time with my beloved horse who got me through my treatment and at least now I can enjoy her without the fear of picking up infections.
I must admit a couple of months after I finished treatment I had a lightbulb moment of OMG did I really go through all that but like all you warriors on here you can do it, just take it 1 day at a time and try and stay positive, which I know is easier said than done at times. I would thoroughly recommend counselling on this journey someone you can offload everything in your head to.
Sending love and hugs to everyone on this thread xxx
Do you have numbness or is it swelling and pain? I am quite afraid of it, I had neuropathy for some days during chemo, and it freaked me out. Great that they can reduce the dose without an impact. Even though now, when the tumor is out, it’s quite hard to measure the effectiveness of the pills I guess…Something to ask my oncologist about.
Incredibly insensitive.
And they will have to cut it again to remove the port, I still have it.
I think having a drainage for 4 days helped + I did all the stretching exercises they gave me, did a self-massage, and I am still wearing a post-surgery bra. Did they consider inserting you a drain for some time? At least it’s less risky when it comes to infections but of course a bit of a hassle to walk around with that bag with lymph 
you’ve got this!
im sure i will
