Stage 1a triple negative breast cancer

[jackandbox]

I was diagnosed 1 1/2 years ago with stage 0 triple negative DCIS. I had a lumpectomy with sentinel lymph node removal. It turned out to be stage 1a triple negative breast cancer. The tumor was very tiny and my lymph nodes were clear. I also had 20 rounds of radiation treatment. My oncologist told me I didn't need chemotherapy as my type of cancer rarely returns. I have since found out that usually with triple negative breast cancer chemo is usually the standard of care. I questioned my doctor again and she insists I didn't need it. I felt very lucky at first but have a little worry about it. Has anyone else had this diagnosis with my same treatments and no chemo? Thank you

[Happyrosie]

Hello jackandbox.

I didn’t have your exact diagnosis but I do have two suggestions.

The first and easiest is to contact Macmillan and chat it over with them.

The second is what I did, which was to go to the website of NICE and look to see what their recommendations are. This is a website for professionals and not necessarily easy for us patients to follow, but in my case I found that what I was told by my doctors was exactly what NICE (National institute for health and care excellence) recommended.

I wish you the best - I’m six years since diagnosis now and very well!

[jackandbox in reply to Happyrosie]

Thank you for your advice. I will certainly check it out!

[waveylines in reply to jackandbox]

A friend of mine was diagnosed with the same type of bc at the same stage as you. Her tumour was 2cms slow growing. She had a lumpectomy nothing else needed. I was quite shocked she didnt need more treatment but when I looked it up this IS the standard treatment.....adding chemo has been shown to make neglible difference and so not worth the trauma it inflicts on your body and the potential long term harm.

[jackandbox in reply to waveylines]

Thank you. It's such a scary thing to go for. I wanted to make sure we did everything possible so it doesn't come back. It's especially scary since my next mammogram is due soon!

[Vgrady76]

Hi, I was diagnosed 2years ago with ER+ her-2 Neg, stage2a breast cancer, my treatment consisted of 15x radiotherapy and Tamoxifen for 5years, I'm pre- menopausal, I also skipped the Chemotherapy, as I was informed it would not of benefited me, I have heard of triple neg type, and also heard the standard of treatment is Chemo, but your oncologist must know what shes talking about, treatment regime's change all the time, I wouldn't worry about it, think yourself lucky that you could skip that part of treatment, I did. X

[jackandbox in reply to Vgrady76]

Thank you for your reply. It's very reassuring to me. I was very relived I wouldn't need chemo. But others have told me I should've had it. Ill try not to worry about it anymore!

[Vgrady76 in reply to jackandbox]

I totally understand your worries, once you have been diagnosed with BC, your anxiety never goes away, I've just had my 2and year mammogram, which was clear, but it never gets easier , like I said I would trust your oncologist, I made some lifestyle changes, I watch what I eat, I dont smoke or drink, I dont eat red meat, because it's got oestrogen in it, and that is what was fuelling my BC, be kind to yourself, if you ever need to talk dont hesitate to private message me, my journey is still ongoing, read my posts, and it will update you .xx

[jackandbox in reply to Vgrady76]

Thank you

[Lainey66]

Hi in 2015 I was diagnosed with triple neg stage 2 bordering 3. I had a double mastectomy and lymph node clearance 9 months of chemo and then 25 sessions of radiotherapy. They would not let me return to work due to the level of stress associated to my job and seeing as it is as yet unknown as to what feeds TNBC they feared stress could be a factor so I had to take early retirement. I had residual cancer which is very tiny cancer cells coursing through me after the surgery was performed, hence so much chemo. They still keep a very close eye on me. Thankfully I have an amazing team of doctors. Have you researched TNBC?

[Rufusmom in reply to Lainey66]

Hello Lainey...you mentioned having "residual cancer." How was that determined and what kind of tests do you get to keep track of the ongoing status? I was diagnosed with Stage 1a breast cancer ER+/HER2- a year ago and had a lumpectomy and radiation (live in US). I've been surprised by how little doctors seem to be able to offer in the way of tests that would show a return of BC or metastasis early, before it becomes harder to treat. Thank you and stay well.

[jackandbox in reply to Lainey66]

Thank you Lainey!

[Lainey66]

Thank you. It is like living on a knife edge. It was detected in the tissue that they tested in the lab post op. This resulted in 9 months of chemo and now I have twice yearly bloods to check the cell count. It seems to have levelled out at 30 but 40+ means more treatment. My GP tests due to the fact that there is no medication for TNBC post chemo to assist in warding off the cancer for the 5 to 10 years after. I am on no medication and rely on the bloods. I am aldo very lucky to havd a good GP. Had I been on meds the only bloods I would have would be those at my yearly onco review. Stay safe and well. Easy said but try to distract your focus onto activities you enjoy. As worrying will make you ill. Stay safe and well. E xxx

[waveylines in reply to Lainey66]

Lainey so sorry to hear this but so good you have such a good GP that keeps an eye on you.

You're right no matter how good the prognosis the worry of 'is it back' never quite leaves you. Am in the middle of a scare at the mo but like you the doctors were straight onto it and after extensive tests hopefully we will have got to the bottom of it. I find out tomorrow.

I think all we can do is try to live in the moment and take those opportunities to enjoy life as much as possible. No one knows what our future holds and actually no one at all knows- its just that those who've never been diagnosed with a life threatening condition live under the illussion that they will live their due 8 score years plus. We've been given the heads up not to waste what we have so in that regards I consider myself lucky. Not that that means I need to rush off and do a hundred and one things (though I might try -HaHa!!) but to take pleasure in the smallest of things such as the smell of fresh cut grass, the sun on my back in the garden....... Often I forget and let myself get burdeoned with the trivia of small fry incidents, worries and what ifs.....so I need to practise far far more but when I do find that sweet spot of sheer pleasure and peace it is bliss. My little dog has this approach to life taped and I envy the ease she does it, theres a lot to be said for living in the moment! Hope this doesnt sound too twee!

Hugs to all you lovely brave ladies. Xx

[Lainey66 in reply to waveylines]

My sentiments exactly. I enjoy so many new hobbies, love the smell of the sea and the woodlands, enjoy stopping on a journey to take in breath taking views. I think when something like this happens, it changes you as a person, your views and priorities change, in fact I prefer the new me, albeit minus a couple of boobs 🙂

[jackandbox in reply to waveylines]

Thank you so much. Excellent way of looking at life!

[waveylines]

Thanks jackandbox.

And just for completeness my scare is finally over after three months of ct scans, pet scans......its officially been proclaimed as not cancer after all in my lung but scar tissue from radiotherapy. Am sooooooo lucky and on cloud nine!

[jackandbox in reply to waveylines]

Such wonderful news!

[Lovetheoutdoors]

I had a lumpectomy followed by a mastectomy as the tumour had spread out of the lump excised. But I didn't have radiotherapy or chemotherapy after. That was 32 years ago so I expect treatments have changed somewhat. Take care x