Any triple negative survivors out there?

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They do usually grade it at the time of biopsy but that is only an indication and can change when you have surgery… Eg they can biopsy a bit that is grade 2 but when they look at the whole tumour there might be a small bit of grade 3 so that would give it a final grade 3 even if it was a tiny dot compared to the grade 2.

The stage is also worked out after surgery as that is based on the size and spread of the cancer… Stage 1 is a small tumour confined to the breast, stage two may have spread to the lymph nodes or be medium sized and stage three may have spread to nodes further from the tumour or be a large size… Stage 4 is when it has spread to another part of your body and is sometimes called advanced breast cancer or metastasis or secondaries.

However TNBC is pretty much always grade 3… I think horace is the only TNBC lady i know of with a grade 2 and havent come across anybody with a grade 1, so even if you dont know its quite likely it would be a grade 3… As you have positive lymph nodes you would be at least stage 2. Stages 1-3 are still cureable… So thats really what the aim is… To cure you!

Best of luck xx

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Hi all
I’m determined to be a survivor!!!
Keep up the great work ladies, you’re all fabulous xxx
Sharon :-))

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Hi, I’m another one ‘keeping on keeping on’. I too have secondaries… But I’m 3 yrs 6 mouths from Primary diagnosis and 19 months post secondary diagnosis. Tnbc does have a mind of its own, but it is very very responsive to treatment. Also an area of lots of research.

I’m still here!!!

Sadie xx xx

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I think I am also unusual in being dx with TNBC at the age of 62.It usually manifests in younger women and as you say is usually Grade3. Interestingly I also have a cousin [on my father’s side-his half brother’s daughter] who was dx with tnbc aged 61 and who is still well nearly 9 years post dx.She didnt have taxotere and cant remember what chemo she did have.

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Like Horace, it seems as if I’m another unusual one - I was diagnosed in Dec. 2010 with tnbc stage 1, grade 2, at the age of 67. Isn’t tn also more commonly associated with women of African or American/Hispanic descent?
Loula

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Yeah I’d read that…time to get the family tree out!!

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It is interesting that both loula and I are ‘older’ and both have grade2 tnbc. I had read that about it being more common in those of African descent but everyone in my family back to early 19th century is from North East England or Southern Ireland.

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Thank you for sending positive vibes on this threat.

I specially like Sandytoes story - to go on and have babies after this experience sounds like an amazing turnaround :slight_smile:

I had a PET CT scan last week and am going to get the results tomorrow from my breast specialist. I already know that I still have a lymph node sitting there still with cancer inside, the doc assures me that this does not mean bc has come back.

Miadanu - you had the lumpectomy first and then mx?

I had the gene test and i am not a brca carrier, but still I was wondering if I should ask for preventative mx, just because it’s tnbc. My surgeon deffo supported lumptectomy only, giving me loads of confidence, so I had that in Dec '11. I am very nervous about the outcome tomorrow, let’s see what’s going to happen …

Rexi

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hi,not been on hear for a few years,used to scare myself half to death coming on during my breast cancer journey,i was diagnosed with TNBC on 10th july 2008,it was a 15mm tumour stage 2 grade 3,i had a lumpectomy and all lymph glands removed,i got clear margins,and no node involvement,i had 5 out of the 6 FEC chemotherapy,couldn’t have my last one,due to geting pneumonia each time i had chemo,i then had 15 radiotherapy treatments,and apart from needing to be on oxygen 15 hours per day,i am doing well,i am a 3.3 month suvivor( since all treatment ended)but not wanting to scare any of you,my beautiful sister died on the 4th of june,8 weeks after being diagnosed with a 19mm tumour,she had a lumpectomy like me, clear margins like me, no spread to lymph glands like me,so we were hoping and praying for the same out comes,we were so very close,she went with me for my tests,result,every hospital appointment,every chemotherapy treatment,she just wasn’t herself after her lumpectomy.her daughter took her to hospital,they kept her in,gave her a mri scan,what it revealed shocked us all to the core,she had secondries in her lungs,liver,bones.kidneys,and brain,i just cant get my head round it,she was only 6o,i was 52 at diagnosis,just cant believe she died before she even had chance to start any treatment,and i even feel guilty,which i know i shouldn’t,but why ?i have another sister,i now have to have a genetic test,praying it will be negative,i really hope i don’t upset any one with this post,it is not my intension,i just think we have to be honest at all time when dealing with cancer,i have never come across a case like this,so bear in mind its rare,you hear so much bad about tnbc,but they also say if it is going to come back,then its usually within the first 2 years,so i have to take comfort in that for myself,i pray for all tnbc sisters,i pray for a break through that some day soon we will have follow on tageted therapies,i pray for newly diagnosed just starting out on this journey,and i pray for all suvivors,god bless each and every one of you

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Yes Horace and Katsteer, I’ve researched my family tree back to the late 1700’s and all my ancestors came from the middle of England. My six monthly checkup with the surgeon is due soon (fingers tightly crossed) so maybe I’ll ask him about the tn , age and ancestry connection.
Loula

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The results from my surgeon today were good! Yes there is still a cancerous lymphnode, which needs to be taken care off ASAP, but the PET CT scan shows no other areas of concern! We are soo relieved!
So going to have a small operation in the few days and recover. There is some conversation to be had if there is any additional treatment necessary.
X

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I can offer 12 mths post surgery (but 16 mths postdiagnosis as I had chemo first), with a large TN tumour aged 30.
I had FEC chemo first and went into clinical remission (ie no lump anymore) after 2 cycles!! After 4 they scanned, no tumour on ultrasound so they operated early. No tumour found at all - only a possible small scar in 1/24 nodes)
TN can be chemo sensitive - mine was - and plenty do survive long term. I want to as well - I have a 2 and 3 year old to look after.

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Hi I am two years past diagnosis, tumour size 3.7 cm, nodes clear and no vascular invasion, I had WLE, TAC chemo and 20 rads. Just had annual mamogram in May which was clear. I have been back at work full time for the past 16 months and really enjoying life, making the most of every day with my kids. I have heard that most reoccurances happen within the first 2-3 years with triple neg so I will keep praying until May next year. My eldest lad wants to be a doctor and I so want to see him achieve that xx

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Hi all, I was diagnosed Jan 2008 age 62, 6.5cm tumour, opted for chemo first 6 lots of TAC, boy was it hard. Double mx, (had WLE in other breast in 2004 so decided to get rid of both), with axillary clearance, 5 of 19 nodes and surrounding tissue affected. Then three weeks rads. Finished treatment in September 2008 so very nearly four years now. Have been signed off by my Oncologist no more check ups! So there is light at the end of the tunnel there are quite a few of us TNBC survivors, we just don’t come back to this site as often as we used to.
Love and Hugs to all xxxx

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Hi Anniemay
I haven’t been on this site for a while - daignosed with TNBC in March 2012 and just finished chemo…interested that you were diagnosed some time ago and still doing well. Also that you are in the Manchester area as I am. Hope things continue to go well for you.
Anni

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Well. I don’t yet consider myself a ‘survivor’, but I am am now (within a few days) a year on from dx. I had a very small , 9mm, screen detected tumour and have have had 3xFEC and 3x tax followed by rads. After WLE with no nodes involved. treatment was awful and the emotional follow on has been tough to say the least. i have my 1st screening mammo next week and I spend my whole life worrying about aches in my big toe.
But I have think I have made friends for life on here (see starting chemo in December 2011) and I am now trying tom believe that it is all going to be OK.
Hang on in there people and DON’T look on the secondary threads!
I will post agian after my mammo results.
Love to you ALL xxx

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Don’t look on the secondary threads!
Please do look on the secondary threads, because there you will find some of the most courageous, witty, supportive and loving ladies you are ever likely to meet. There you will see true survivors, who withstand hideous treatments in order to prolong their lives with their familes and loved ones for as long as possible. Some of us secondaries ladies are feeling a bit marginalised at the moment, wondering where we fit into the sea of pink that is October. We’re trying hard to raise awareness of secondary breast cancer amongst the general public, but maybe we need to start here within the breast cancer community. And we are one community which needs to stick together, because you’re never completely in the clear with this foul disease.
I too had an early, triple negative primary(12mm) with no node involvement, and here I am three years later with secondaries to my lungs, liver, sternum and lymph nodes.
I wish with all my heart that Superfit123 and friends continue to thrive and live long, disease free lives.
Good luck ladies
Moondog

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aww moondog that is so sweet all true of course i hope they bring out the wakey baky for us all laura xx

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A powerful and thought provoking post moondog-thanks

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Hi Moondog
I agree with you that we should look on the secondary posts I do have a look to see how you are all getting on and hope that I dont someday have to join you (sorry that’s very selfish sounding) But I do have the utmost respect for you all and the way you keep on keeping upbeat despite the awful treatments you are all having to go through. I am 18 months past dx for TN and as you found lump very early but am aware that is no guarantee with this disease. I wish all you secondary girls the very best of everything
Jill