So yesterday I was given the news that I have Grade 3 Triple negative cancer and also DCIS in my left breast. I found my lump 3 weeks ago and got in to see my GP really quick as there is a history of breast cancer in my family. I check myself quite often so the lump they have found is 14mm by 9mm and at the moment from what they have seen in the mammogram and ultrasound they don’t think it has gone to my lymph nodes.
I have been told I will need Chemo first and then surgery plus radiotherapy but they have also recommended being tested for the BRAC gene so I am able to make an informed choice when it comes to the surgery. I have also been told today that I also need to have a CT, MRI and Bone scan so I am now freaking out and panicking this is because they think it is elsewhere in my body and are not telling me!
i had a full hysterectomy 18 months ago as I had severe endometriosis, adenomyosis and fibroids and have recently being having some aching and twinges in my abdomen which I am now panicking about and fearing the worst.
I am determined to fight this with all my might but have consulted Google on my condition (stupid I know) I am now feeling less positive about the prospects of recovery etc so would love to hear from anyone who has experience of fighting this and what to realistically expect.
Firstly just to say how sorry I am about your diagnosis. Your feelings of anxiety and panic are perfectly normal under the circumstances. I was diagnosed with breast cancer in December last year, grade 3 tumour 21mm with ancillary node involvement. At the time my biopsy confirmed ER and PR negative HER2 positive/negative inconclusive. The scans you are having are a normal process of establishing if the cancer has spread and not because they think it may be elsewhere. It is frightening but the scans are a necessity and can give reassurance if the results show it has not spread. My treatment plan was the same as yours, chemo, surgery, radiotherapy, although I took a slightly different path in the end as I opted to join a trial (ROSCO). Details of that can be found on the Cancef Research UK website. I had 4 rounds of FEC, followed by lumpectomy and full ANC. The biopsies from this surgery confirmed I was triple negative and can admit I didn’t want to hear that. Although FEC did a good job of shrinking my tumour to 6mm it wasn’t so successful at destroying all the cancer so I went on to have 4 cycles of TC, the final session was last Friday (again part of my trial). I will start my radiotherapy on 21st Oct. For me, once treatment started I reached a sense of calm. My body was finally getting extra help to fight the bc. Between diagnosis and my first chemo session I was on meds for anxiety then found I no longer needed them. The thought of chemo is scary but you’ll soon discover that fear of the unknown is the biggest problem. There are plenty of meds available to help with the side effects. It’s tough but you can and you will get through this. As you have discovered it’s not advisable to use Dr Google, don’t worry I think we all do it. The good thing is you have discovered this site. Personally I now only look here, the NHS, Macmillan and Cancer Research UK websites. When you receive your starting date for chemo then join the monthly forum which you will find in the starting treatment heading. You will find there are others who are also TNBC in the other monthly feeds. Just pop in and ask and they will reply to you. I’m actually from the February 19 group but we have very recently decided to set our group up in Facebook Messenger… All but 3 of us have finished the main treatment. 2 are currently having rads and I’ll be the final one. Despite this I intend to pop into this site still. It has been my lifesaver. As for the pains in your abdomen I do know people who have had hysterectomies and talk about getting aches and pains, so it could be the same for you. Also it’s surprising what symptons arise from stress and anxiety. If you check out the Cancer Research site and look under trials you will see that research into TNBC has and is being undertaken plus all their information is up to date unlike Dr Google. Our type of bc responds extremely well to chemo so try to remember that. I have no doubt I will be clear of this bc after treatment. Sorry if I’ve waffled on a bit but I’m still experiencing one of chemo’s side effects, chemo brain??. I hope some of this makes sense?. Stay strong, easier said than done at the moment, but you will get through this. Take care Susie B . . . .
Hi Cheza, I’m from the Oct’17 group. It is scary having to have scans, but when I had to have them my oncologist said that it wasn’t because they expected to find a spread elsewhere and having them was normal procedure. Don’t google because as the nurse said to me, the worst stories always seem to appear near the top and also a lot of the information is now out of date. I’m post-menopausal so I have Zoldronic Acid every 6 months to help strengthen my bones and the chemo nurse told me that wasn’t available even 5 years ago x
I was diagnosed with tnbc June 2018. I too had the tests you have been advised to have. I had 6 months of chemo, a lumpectomy and 3 weeks of radiotherapy. I am now in remission. I can honestly say the thought of chemo was worse than it actually was, as others have said, there are meds available to deal with any side effects. I also had the genetic screening but mine wasn’t genetic just bad luck!
Hope this helps, also enjoy the chocolates and flowers that you will undoubtedly get!
Sorry I’m a week late responding to your post. Might be just slightly ahead of you as my CT was last week and yes I empathise with your “panicking and freaking out”. Now waiting for MRI and apparently chemo will follow very soon. The replies I received on here are enormously comforting. Let us know how you get on.
I was diagnosed with inflammatory breast cancer in July. I had a PET CT scan to see if it had spread it only showed it had gone to my lymph nodes but nowhere else. I started chemo in August 3 FEC and 3 T and finished in December. I had a mastectomy and lymph node clearance 6 weeks ago and am now waiting for Radiotherapy to start. My chemo went really well surgery went well too. My advice is to stay as positive as possible as that’s half the battle. I hope your treatment and recovery goes well.
I’m really sorry to hear about your diagnosis and understand exactly how you feel. I’m in a similar position but mine has spread to quite a few nodes.
All of these tests are completely normal, so try not to panic. This limbo phase is the absolute worst, but try not to google either. Listen to your doctors and take any opportunity you can to talk to your dedicated breast care nurses. They know your individual situation and treatment plan.
Whilst I’m still in the early days of my battle (just started chemo) I can say from what my nurses have said that TNBC is known to respond really well to chemo. And, after just one session, I can already feel small difference in my affected breast and a couple of the affected nodes.
I hope your treatment goes well and that you are able to stay as positive as posible.
Hi there, I have just found your thread and like u I’m having ct and mri tomorrow. I have TNBC and biopsy of lymph nodes were negative for cancer but I’m so nervous about the results of scans. How were they and how are u doing?
