Treatment yes or no

Sorry, I didn’t have triple negative and I had chemo so I can’t advise you. I just wanted to bump you back up to the top in the hope someone else will see your post. This is such a personal decision and you seem like someone who has/will research this decision fully. I guess part of the decision may be based on your age and circumstances? You’ll know that triple negative is aggressive and I was told that my kind of BC was nearly as aggressive. I was 49 (my second BC) with a 9 year old, my main priority was to get through for her. Chemo was tough, some find it easier than I did, some find it tougher, but it was hard. Now I’m through the other side by some distance and I don’t regret having the chemo. My thought process was I didn’t want to be able to look back if things went the other way and wish I’d everything offered to survive it. Have you had some counselling around this? That might be helpful, it’s important you make the right decision for you regardless of what others think. All the best of luck to you x

Hello AR66, 

I read your post and although I didn’t have TNBC I just wanted to share my thoughts.  When we first  hear breast cancer our emotions really kick in overdrive and making rational decisions based on science can take some time.  The issue with TNBC is it is considered a more aggressive breast cancer so decisions should not be delayed.  Science has really made advances in treatments for TNBC and so grateful. Cancer is a killer and if no treatment is done the outcome is grim.  I don’t want to preach but as a RN I have seen what cancer can do.

There are some women who may not want or be able to have treatment like an elderly person with a lot of co morbid illnesses that could not tolerate the treatments but otherwise following the standard of care gives you a chance to live.  
Glad you feel well and like I said I know this is a personal decision.

There are many women who will be able to help you with their personal stories.  Take care.

I don’t know your circumstances and I would start by saying it’s your right to choose whether or not you want the treatments offered. My perspective is that of someone with metastatic TNBC. My primary cancer was small, found on a routine mammogram in 2021, and I had no lymph node involvement. It was however grade 3 and PD/L1 positive, meaning it had the ability to hide from the immune system. Unbeknown to me and my doctors, it had travelled through my blood stream to my liver.  I have had all the treatment I was offered. A wide local excision, chemotherapy, radiotherapy, liver ablation, then immunotherapy, more chemo and another liver ablation after the liver mets were found. I have been in remission since all this treatment completed, and thanks to the immunotherapy, am expecting the remission to last. It hasn’t always been pleasant but it’s always been doable. In the meantime I have seen relatives and friends die of cancer and it’s worse than unpleasant. 

Hi. I hope you are ok. What do you mean by wanting things to take their course? Unfortunately these things don’t go away on their own. 
I felt the same at the beginning, so scared to take the treatments because everyone paints a bad picture of chemotherapy but let me tell you I am 6 sessions in of 9 now and I’m glad I at least tried it, I feel better knowing my body has had a “rinse through” to get rid of anything, it’s a security blanket having the treatment and I have realised that I am very lucky to have access to these treatments as a lot of other people don’t. I’ve had a second chance at life and decided to take whatever they recommend. 
I know it’s scary but I would suggest you just try the chemotherapy offered, if you struggle with it then you can decide whether to proceed or not and then at least you can say you tried. 

Hi there.

I’m a returner to the forum, having had breast cancer 8 years ago and then recently finding a recurrence in the same side when I was being investigated for something completely different and in no way as serious. It was a massive shock as I had no lump or symptoms.

I’ve just had a mastectomy with diep flap reconstruction and reduction on the other side. I am waiting for results to see if I will need chemo.

After the shock of finding I would have to have a mastectomy I had to undergo a variety of scans to see if it had spread. This in itself was so far the worst part. I imagined and expected they would find I was riddled with cancer and that wait for results is very very hard. Your emotions are all over the place. My scans came back clear, which was a relief.

when I was on this forum before there was a lady who rejected chemo and tried many many different types of alternative treatment. She was, in my mind very brave and followed her own path, shared her journey and got plenty of very negative comments from other people, but many many more supportive ones from other members.

I felt she must be mad at first, but I followed her and I learned a great deal about choice and following a different path. She did pass away, but in the years she was active on here she probably helped a lot of people by sharing her journey.

She earned my respect but I felt sad thinking how her remaining years were spent chasing an alternative treatment that never came. I was happy to have my treatment whatever the outcome and give myself the chance to enjoy my life and move on from cancer. 
You must do what you feel is right for you, but the comment about letting things take their course concerns me. I am registered with and have spoken to the psychologist at my hospital twice now, and it has helped me so much. Have you been offered this?

Its such a momentous decision that having someone neutral to talk to can really help.

don't discount your options just yet. It’s early days and you need to just take each stage as it happens, scan results, treatment options etc. You won’t be forced into anything.

Think about yourself. I bet you’re a lovely person, with friends and family who love you. Do you not think you deserve to be able to live? That you would be a burden to others? I’m telling you from my experience that you’re far better alive, sharing your experience to support others, enjoying the little things. A sunny day, nice cold G&T, walk on the beach with a friend or partner.

And even if your an old grump lol, you still deserve your happiness, don’t think you don’t.

Cancer is a horrendous life changing thing, that tests you at every point. You absolutely do have the right to choose, just make sure you had the full picture. The treatment I’ve had and will have in the future have changed so much in 8 years. Advances happening, new drugs discovered. The fellow patients become a little support group and you make deep connections and new friends.
Just take one step at a time. Wishing you the very best for yourself and much love and support. You are very brave to come on here and say how you feel, that can be the first step xxx Keep posting and updating us xx

Hi. Sorry to hear it has come back 8 years later. Are you currently on any medication/had you finished it? What type of cancer was it, HER2 positive. HER2 negative etc? My aunties came back 8/9 years later after she had come off the tamoxifen. Just wondering if there is a correlation here we can all try and prevent. I know you can insist on taking the medication for longer. 

Hi Sparkle, glad to hear your chemo is going well. 

In 2016 I had ER/PR positive breast cancer. I had a lumpectomy and a couple of lymph nodes removed. I had a very very small cancer cell in my sentinel lymph nodes removed, a micro encapsulation. This was not classed as a spread and wasn’t in the second node. I was advised to take tamoxifen for 10 years. After 3 years my oncologist told me that NICE guidelines had changed and I could stop at 5 years. After reviewing my diagnosis, she then said that I should carry on up to 7 years and then make a decision on whether to continue another 3 years. I did okay for about 41/2 years, but then started to get joint issues and felt like an old lady every morning, getting out of bed. I was an active person, running 20 miles a week so I decided to stop at 5 years. Quality of life is not to be sneezed at!

I have no idea if my stopping on the 5 year mark caused my recurrance.

A couple of years ago I had massive bleeding and fibroid removal, so I’m glad I stopped as that could’ve been caused by Tamoxifen.

my recent cancer was in the same site, DCIS calcifications. I was lucky to be diagnosed randomly.

I just took the recurrance as it came. I’ve had my surgery a week ago and am at home. I’ll never not be grateful for the treatments I’ve received, even though I look like I’ve been sawn in half

My understanding is cancer is to do with our dna and cell division going hay wire, so I don’t have any answers on prevention. I’ve seen that cancer affects vegans, vegetarians, meat eaters, runners, smaller and larger people. It’s just the rollercoaster ride we don’t want to get on.

All the best to you and your Aunty xx

Refused chemo and had lumpectomy today.

informed choice, oncologist was amazing. She explained 6 months chemo, then lumpectomy, then radiotherapy if that worked 87% chance of being here in 10 years. If I had lumpectomy and then radiotherapy and it worked 76% chance of being here in 10 years. Not a huge difference in odds, but a huge relief for me and full support from family and so positive about quality life.

I just want everyone to do what is best for them and live life to the full. 
Hope your still good take care

That’s great news I’m glad you have made the right decision for you and are happy with that. 

I think we need to remember as well that the oncologists are not always right. When I asked by how much having chemo reduced the risk of recurrence she said they didn’t know so who knows if any of us make the right decision!