Triple negative

Hi 

Warm welcome to the club no one ever wanted to join :-/  but you have found a great place to be at a tough time.

There are loads of Triple Negative members who have been through treatment, been found to have no evidence of disease and are living their 'new normal' and there is no reason this couldn't be you too 

Slapped wrist for seeing Dr Google - most of the info out there is outdated and worryingly misleading. You only see the cancer doom and gloom in the media as the 95% of those who recover from BC come out of the treatment tunnel are back into the sunshine.

I won't sugar coat this as treatment for TN will probably include chemotherapy but things certainly can change from the post surgery tissue pathology so until those results are in your treatment regime will be in limbo.  Post surgery any follow on treatments are to keep you free from recurrence. All this is do'able although you will get some tough days to get through.

One thing that may be very helpful for you is to also join the Main Breast Group (Link) This one has loads more members and it is far more active 24/7. More importantly it isn't all cancer talk, there's room for some leisure & laughs as well....  Most TN ladies join both as you can get better support from being part of both groups.

Have you a date for surgery yet ?

J was diagnosed in 2012 with HER2+ BC and we are well into making the most of being cancer free...

Hope this is of some help for now - Hugs, G n' J

Hi Stephie1986,

I-was diagnosed just a year ago so early days. Found the help on this forum really encouraging, and all involved with my treatment very kind. Being older, my children are all grown up so did not have your worries. However, as Dreamthief says, we are given further treatment to prevent recurrence. I was 4 on that scale and therefore treating me as TN. I think the hardest part after diagnosis is waiting for the treatment to begin and you are in that position now. Good luck.

Thank you so much for taking the time to reply and I’m so glad yours is well under way and you are moving forward. I know everyone is different but can I ask how did your treatment plan go as for some reason they are doing a lumpectomy first ? Xx 

Hello,

My treatment was Chemo, Surgery and Radiotherapy. The consultant hoped the chemo would reduce the tumour and it did. Was able to have a lumpectomy rather than a mastectomy. I had confidence in the medical team and accepted their decisions. It is certainly true that everyone is different and the treatment plan is very personalised. Let us know how you get on. x

Hi Stephie. I’m only 3 years older than you and I’m two and a half weeks post lumpectomy with stage 1 tnbc. 

I had a meeting with my surgeon this morning - the material removed had clear margins and the nodes were negative (though there were 7 isolated tumour cells - so the bad fella was heading that direction but we got him in time). They were able to tell me a lot more about everything today and while I’ve chemo and radio ahead, the surgery was a great start. Chemo/radio is basically a fairly brutal insurance policy! The surgery is both therapeutic and diagnostic. It gets rid of the cancer and allows them to tear the tumour apart to really understand it.

i know it’s not the most important thing but my breast that had surgery looks really well. It’s SO similar to the other one. She placed the incision around the edge of the areola so when it is healed you will barely see it. I’m genuinely so impressed by what they can do!

sending love and healing - we might all be in the same crappy club but medicine is amazing and we have an army behind us :-) xx

Awwwwwwwww so glad your op went well and you have such positivity I love that too. So now I guess you wait till start chemo ? I hear a lot have chemo before lumpectomy with this one and I was confused as to why I have lumpectomy first any light on why that is ? So I’m awaiting my surgery date now I have had ct scan mri mammograms ect and they have told me the lump stil in breast as far as they are aware. I read so many awful things regarding this cancer on line and just got so scared. But I’m assuming once take lump they know more like you say. And I imagine the ct scan checks rest of body parts am I right ? Sorry so much I don’t understand xxx 

I believe (and I’m not a medic) but I believe that sometimes they do chemo first to shrink a tumour before operating. For me the tumour was 2cm (2.1cm on removal actually) and had clear margins on the scan so I think that’s why I had surgery first. I don’t know much about CTs but I believe I will have a CT before radio (I’m not sure about this but there was some talk of this today!) - you’re right it’s something to do with monitoring other body parts - like I have had cysts on my ovaries before and have endo so often have an endometrial cyst and they’ll want to know that’s a possibility. Do you have a breast care nurse you can call? Honestly I ring them with all my questions because I forget when I’m in with the doctors!

are you having a genetic test? I had one last week - the test itself was grand but the overview of the different genes they test for was rather alarming - I’m just trying to put it out of my mind until the results tbh.

It is really scary though, isn’t it? I’m super positive about 95% of the time and the other 5% I’m a pure MESS. So I think being anxious/angry/frustrated/scared is so, SO normal - we need space where we don’t have to pretend like things are ok. I hope you have good support and I’m sending all the healing and hugs I can to you xx

Hi Stephie1986,

Granted it’s been a week since you posted so I’m guessing and hoping your concerns have already been alleviated. But for what it’s worth…

I’m the same age as you and was diagnosed TNBC. My lump was 19mm with clear margins and when I had surgery they removed 6 nodes as well, the one closest to the lump had started to have cancer cells but that’s all. Thankfully its all out now. I had a CT scan before the surgery to see if it had spread but thankfully it hadn’t. Please note, I had Stage 4 Hodgkin’s Lymphoma when I was 20 so don’t be alarmed if they haven’t given you a CT scan the same time as me. I’m a complicated patient!

As I understand it, and like Mrsmaggot, I’m not a medic, chemo can be done before surgery to reduce the size of the lump. I’m guessing in your case it was small enough to carry through surgery first like myself. And I definitely agree with Mrsmaggot that the surgery does feel therapeutic. I think of surgery, chemo, radio in this way. The surgery is done to remove the cancer from the body, the chemo and radio is done to make sure its butt is truly kicked to the kerb!

Mrsmaggot, I had the genetics test done back in March and got the results back at the end of July. It was all clear but I completely understand and know what you’re going through waiting for the results. I just kept telling myself that it doesn’t change anything that I had to deal with right now.

Just so you know, I just finished chemo about a week ago and will be starting radio on 14^th Sept. You guys can get through this! The best piece of advice I have seen on this forum is that although this all sucks, the side affects you will experience are manageable. And that is absolutely true. Don’t get me wrong, there are times where you will and need to feel angry/upset etc and that is your absolute right, but the majority of the time you will deal with it like the superstars that you are.

Much love, Jem x

Hi , we are very similar in age. I am 32 and I have a 2 year old. I was diagnosed last Wednesday with a stage 3 TNBC and awaiting the stage which I will know this Friday. It is so daunting isn't it. One minute I feel like I'm talking about someone else, then it hits me then I'm happy...my emotions are all over the place. I have a friend who's gone through this BC twice so I have hope that we can both get through it.  Have you been advised much more on your plans if you don't mind me asking?

Sending love, Lenka. x

Hello my love thank you for your reply. I now have had my surgery clear margins no lymph nodes involved and lump was 2 cm now I await oncologist to start chemo. I have been referred for genes test so have to await that. No history in my family I do have a nodule on lung 1.2 mm hoping it’s nothing had ct before any this that’s what they found and another ct in 2 weeks to hopefully see it’s stil the same so no worry. What were your side affects of chemo and how was it administered did u have picc line evt ? How are you feeling now ? Thank you so much for sharing your journey with me and good luck to you. Did u get personal stats of reoccurrence rate as some say can get that ? Xx