New primary Breast Cancer! Grade three lobular triple negative! Unrelated to my MBC. Time frame for surgery?

[stardust1965]

I was diagnosed with de novo MBC in November 2018 and no lump was found. So started on Ibrance and Letrozole as my first line of treatment.

I recently felt a large lump in my breast appear almost overnight and mentioned it at my oncology appointment a few weeks later. I was then booked in for a biopsy, mammogram and CT/PET scan three weeks later and waited a further three weeks for the results which I got back on Wednesday (27 July) - my 31st wedding anniversary.

I have been diagnosed with lobular stage three triple negative breast cancer! Really?!

I have a pre-op appointment on 11 August and have been told it will be a minimum of two to three weeks before surgery can be scheduled but it is the holiday season so it might be longer. It will then be about 12 weeks since I first noticed the lump and 10 weeks since I first mentioned it to my oncologist. I am nervous about the length of time it will have been and about it spreading and metastasising in that time.

How long have others had to wait under the NHS for this surgery with triple negative BC? And any other tips for a good outcome?

I am assuming I will have a mastectomy as it is already 6 x 5 cm, and perhaps radiotherapy after that.

I’ve been told it is unusual to have two different breast cancers so will be tested for the BRCA 1 & 2 gene!

Ironically the Capecitabine I am on is working well and I am feeling good, besides the burning type pain/discomfort in my breast.

I seem to be doing this whole BC thing in reverse! What a rollercoaster ride! 🤦‍♀️

Vicki

[Mary115]

Oh stardust. Just feeling for you as you are on your roller coaster ride. Sometimes I feel how horrible it is and then even in the midst of ups and downs I spot a bit of of view which surprises me. My Hope for you today is that you are surprised by a bit of beauty and see your own beauty too. I like your kindness in your responses here. Thank you

[stardust1965 in reply to Mary115]

Aww thank you, from the beautiful Hungarian/Austrian historic border town of Sopron. It’s been so hot here but today it is raining- I love the rain, having grown up in a rainforest near the sea!

[Ursula_I in reply to stardust1965]

Lovely! I'm learning Hungarian with Duolingo. Challenging language but fun! Are you able to speak it?

Re the TN diagnosis - I'm sorry, I don't know. I think try not to worry about the time frame. My initial breast tumour (triple positive) back in 2016 was 75mm long! (and in fact I had lumpectomy not mastectomy).

Anyway I hope you can get some good advice on here, but in the meantime enjoy the holiday. Jó napot kívánok!

Lucy

[stardust1965 in reply to Ursula_I]

Köszönöm szepen.

No, I don’t speak Hungarian, it’s just so difficult. My husband learnt the language to move here for his job though. Why are you learning Hungarian?

I was wondering how your holiday went with your three boys?

We went to an excellent Hieronymus Bosch exhibition earlier this summer “Between Hell and Paradise” at the Museum of Fine Arts in Budapest. Did you see any paintings when you were away?

I know nothing about the way forward with the TNBC so it’s a little daunting. I will hopefully talk with my secondary BC nurse tomorrow morning.

[Hidden]

My goodness Vicki.I am truly shocked at this. I have not heard of this before, but I am sure someone has.

I know that the Nice guidelines were (in the past) that surgery needed to be within 3 weeks of diagnosis. This could have changed by now, and the difficulty is around the time it takes for the investigations. Sometimes the results take a long time to come through.

The waiting is always the most difficult time, and that is when our heads worry. Try to take faith in the fact that you are on treatment which will hopefully prevent it from spreading further.

Hoping for speedy surgery for you

Clare x

[stardust1965 in reply to Hidden]

I wish I could be seen earlier and will phone my BC nurse on Monday to ask or at least to get some reassurance. From my perspective it seems too long to wait.The Capecitabine isn’t effective on the new primary as far as I can tell. Surgery to remove it would be the solution then I can get back to my common garden MBC! 😉🌸

[Nocillo]

So sorry to hear about this new development. I also have 2 cancers, ductal and lobular. I hope they can schedule you sooner rather than later. You’re not alone, stay strong!

[stardust1965 in reply to Nocillo]

Thank you for your kind reply. Are you on the same treatment for both types? I’m hoping to avoid TNBC secondaries but as it’s grade three it’s quite aggressive. 😬

[Nocillo in reply to stardust1965]

I am on the same treatment for both. The ductal is in my bones and has been stable. The lobular moved to my stomach lining after 5 1/2 years and that’s when I switched treatment to Ibrance and Tamoxifen.

[stardust1965 in reply to Nocillo]

Thank you. I’ve already been on Ibrance so that’s no longer an option for me. I hate the waiting…

[Hidden]

It does seem far too long to wait Vicki, and very bad for your mental well-being. Below is a link from cancer research on wait times. You definitely need to push.cancerresearchuk.org/about-...

[stardust1965 in reply to Hidden]

Thanks for the link. I think the wait times are all so much longer now after Covid. I’m in good hands but the waiting is making me anxious. I know it’s ironic given I already have secondaries but I’ve not been through this before, and it’s TNBC. 😬

[8576]

Not to worry. The length of time tells me that they are not worried about you. If it is a bad situation they rush the surgery. Wishing you strength as you wait and get things in order so it will go smoothly. Be kind to yourself .

Cheers, June S.

[stardust1965 in reply to 8576]

June, thank you for your kind words. I wish you were correct but I’ve already been told I am priority but this is the quickest they can fit me in. The number of people self funding and going private instead of using the NHS because of waiting times is increasing here in the U.K. I don’t think it would make that much difference though given the backlog from Covid.

[Teddielottie]

Hi Vicki ! Sorry you have these new additional stresses , as if MBC isn’t enough ! I would contact your oncologist’s secretary and raise your concerns regarding timing issues with your oncologist . Ocassionally they may have cancellations and might be able to get you in sooner ( my mum had it happen to her when she was fastracked (2 weeks) for endometrial cancer (stage 3) a few months ago , and there weren’t any available surgery slots for a few weeks , but she got in within two weeks when someone cancelled and additional surgery times became available. It’s worth a try ( tho’ I admit not easy in holiday season !). I chose to have a right mastectomy (rather than smaller surgeries) over nearly five years ago and haven’t regretted it. I have an annual mammogram on my non- affected left side , my onc saying that if something arises she will do a smaller surgery if caught early .

I hope you can get seen soon but stay strong and keep your mind occupied.

Ps. I am just back from a relaxing lodge holiday in the Cumbrian Lakes , and trying to catch up . x 💐

[stardust1965 in reply to Teddielottie]

Thank you for the suggestion to push for a cancellation slot. It’s a good idea and definitely worth a try. I’m pleased it worked for your mother at an anxious time.

Good to hear you’re enjoying the summer too! 😊

[mariootsi]

Oh Vicki! I wish you the best! Can't believe you have to wait so long for everything!

[stardust1965 in reply to mariootsi]

Thank you. I’m hoping it won’t be too long. 🤞

[mariootsi in reply to stardust1965]

Me too!

[Hotlantaphatz]

Thank you for sharing your amazing journey.

[stardust1965 in reply to Hotlantaphatz]

Luckily my moto for the last few years has been to “expect the unexpected”! This new breast cancer is really unexpected! I quietly read this forum most days, taking breaks for holidays or when life gets busy. I just wanted to say your positivity shines through in your posts. Take care.

[stardust1965]

I’m not sure how to up-date my post so will reply here. I spoke with my BC nurse this morning. I’d researched TN invasive lobular breast carcinoma and discovered they are rare tumours and unique breast cancer affecting elderly women. I’m 57 which is old to my daughters but not to me. So I asked the obvious question and discovered I have triple negative ductal primary breast cancer (not lobular) so I am, rather inappropriately, doing the happy dance. 💃 TN ductal is still not what I want to be dealing with on top of secondaries but my chances of beating this new primary BC just improved. I’m still having to wait for the pre-surgery appointment which is in ten sleeps. I will keep myself busy in the meantime. Thanks for all your responses.

[Bettybuckets]

Vicki- csn you give us an update on your health? I know you were worried about how long you had to wait to get the surgery.. prob a bit late to try to be reassuring but lobular is often missed (like mine was on my mamagoram 8months prior) and they said it had prob growing for years si hopefully the few months you had to wait wasn’t a

[stardust1965 in reply to Bettybuckets]

I’ve had a lot going on and really don’t know where to begin! Good news is (see my post just above your reply) is that it is ductal not Lobular. I had a mastectomy seven weeks ago and today I start three weeks radiotherapy. I will post an up-date when my head is clear.

Hoping your treatment plan goes smoothly. Vicki

[Bettybuckets]

oops sorry got muddled at the end snd hit sent