Recently diagnosed with triple negative ductal breast cancer at 38 - struggling

Hi Saram2411 

I am sorry you have been diagnosed with TNBC. I am one of the Macmillan community champions and I have been living with metastatic TNBC since 2022. I can certainly relate to that feeling of crippling anxiety as you go through more tests and uncertainty. In my experience not everything they look at turns out to be a problem but it does feel a bit like opening Pandora’s box. 

I expect they will have a treatment plan for you on September 9th, and being TNBC, it will probably involve chemo. There may be other drugs used alongside the chemo depending on what the various biopsy tests have found - not all TNBC is the same. So hopefully a couple of weeks or so after that you will get started. 

I have attached a link below to our information on talking to children and teenagers. Your son is old enough to understand a lot, but he’s not likely to spiral to the worst outcome unless you take him there. Most people with TNBC are successfully treated - even my metastatic TNBC was put into remission with treatment and I remain well with no evidence of disease some years after finishing treatment. You can read my story by clicking on my name but try not to think the worst - it’s my story and not necessarily your story. 
https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers

I can see you have already joined our main breast cancer forum, which is a lot busier than this one. We also have a triple negative breast cancer forum. Triple negative breast cancer forum 

Wishing you all the best. 

Thank you so much, I was actually reading your story this afternoon and it was a good eye opener. Struggling at the moment with silly thoughts about how fast it grows. I need to stay clear of Google as the search results are not helping me. Reached out this afternoon to the online chat and found some useful links that I will focus on more. 

Hi Saram2411 
I was just unlucky that a small breast tumour formed around a blood vessel and leaked that way. It’s not common. 

A lot of info on Google is very out of date as treatment protocols have changed. The drug that worked for me (pembrolizumab) wasn’t approved for TNBC when I was first diagnosed so I was very very lucky in that regard. It’s a drug for PD-L1 positive TNBC. They will probably have tested you. 

I fond reading story's on here help me know there is hope, I want to know what my treatment plan is. My mri scan has also showed another pocket in the same breast they want to investigate more so I just feel in limbo, I want to know the plan so I can get myself mentally ready.

It definitely helps to have some idea of what’s coming. The attached link gives info on how TNBC is treated. In my experience most people have 4 cycles of EC chemo and 4 cycles of Paclitaxel and carboplatin. If your cancer tests positive for PD-L1 you will likely have pembrolizumab alongside both and the chemo order will be reversed. It’s normally 3 weeks per cycle so you are looking at 24 weeks of treatment. Sometimes they condense it over 18 weeks. Then surgery. Then radiotherapy. Then some more pembro if you have tested positive for it. 

www.macmillan.org.uk/.../triple-negative-breast-cancer

It’s not pleasant but it’s doable for most people. You definitely don’t get all the side effects they list nor do they affect you all the time. 

There are a number of women on the breast cancer forum going through it. Breast cancer now also has a thread running for people currently going through TNBC treatment. 

Hi, I was diagnosed with BC in 2023. At the time my daughter was just finishing off at Primary School. I remember the road to my treatment plan seemed to go on forever! Everything was a two week process. Like you, they kept wanting to check more and more different things which felt very frustrating at the time and only fuelled my anxiety. My oncologist explained that they’d rather get everything right the first time rather than miss anything. 

I went on to have a single side mastectomy with immediate reconstruction, 8 rounds of chemo and then 15 sessions of radio. And I am now currently in remission. I still take a cocktail of drugs every day to help keep me that way! I had 19 lymph nodes removed and had cancer in 4 of them which is why I had/have so much treatment.

With regards to your son, I would say you know him best and what he can and can’t cope with. However, I think you’ll be surprised at how resilient they can be! My daughter wanted to know everything at every stage. She said that it helped her feel more in control of the situation and knew that she didn’t have to keep wondering if anything else was going on constantly. I have always been as honest as possible with her, answering any questions, showing her bandages, scars etc. She always wanted to know when my appointments were and what was being done. Giving her the knowledge of what was going on gave her the control to deal with the situation. But every child is different and you know what your son can handle.

I personally always just tried to deal with one thing at a time rather than the whole picture. It felt easier to deal with. Sadly we have so little control of what is happening that we just have to roll with it. 

Cancer robs so much from us, I was determined that it wouldn’t take over my mind completely - I wouldn’t let it win. Baby steps, one thing at a time, tick things off in your head as you go. Remember as you go what you have already conquered.

You will very quickly discover both you and your son are a lot tougher than you know right now.

Take care of yourself, take a deep breath and then one step at a time