New diagnosis

Hi all,

I’m 27 and have been diagnosed (today) with grade III triple negative breast cancer, and just wanted to touch base with you all to see if anyone has any words of wisdom as I start this journey. My appointment was a bit of a mess, I wasn’t expecting this diagnosis at all. The breast surgeon has referred me to an oncologist, a plastic surgeon, genetics testing and to a gynaecologist to talk about egg harvesting. Has anyone else experienced this? I’ve got a date for a wide local excision, but I can’t help but feel a mastectomy would be better - I have a feeling there’s a genetic basis for all this, and maybe it’s just better to cut my losses and get rid of the breasts, rather than having multiple WLEs, and ending up with a poorer result on eventual mastectomy. I’ve got to have chemo too, and I’m dreading it, plus radiotherapy. As I said a bit unexpected and not at all sure what’s going to happen to me.

Best wishes to you all,

Livy xx

Hi Livy

Firstly, welcome to the Discussion Forums, I’m sure you’ll find them a great source of support and information.

Others will be along soon I’m sure to share their experiences with you but in the meantime, I thought you might be interested in our Resources Pack which is filled with information to help you understand your diagnosis, test results and the various treatments available. Here’s the link to the page where it can be ordered:

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early-breast-cancer-bcc145

Also, here’s the link to the Younger Women’s publications page which has lots of other factsheets which you might find helpful to either download or order:

www2.breastcancercare.org.uk/publications/younger-women

I do hope you find this information helpful.

Kind regards.

Louise
Facilitator

thanks Louise - got given a pack of these today by the breast care nurse.

Hi Livy,

So sorry you’ve had to join us. I was diagnosed at the end of last May and remember all too well how overwhelmed and terrified I was. I had chemo before my surgery and started 10 days after my diagnosis which was a whirlwind of CT and MRI scans, genetics testing, fertility clinic, meeting with the oncologist, surgeon and having a port inserted under general anaesthetic! EXHAUSTING!! The beginning is such a rollercoaster of appointments and emotions and you are just swept along feeling completely out of control. However, once you have a treatment plan you will feel more in control. It got better for me then and I haven’t felt as bad as I have when I was first diagnosed.

I was terrified of chemo, but, for me, and many other young women I have met, it really wasn’t that bad.

You say that you have a feeling that there’s a genetic basis for your cancer - do you have a strong family history? I do, and despite not testing positive for the main breast cancer genes (BRCA1 and BRCA2) my geneticist thought I must have an unidentified gene due to my family history - so I opted for a bilateral mastectomy with immediate reconstruction using expandable implants and am happy to answer any questions you might have.

Hopefully you will find this site supportive and helpful. The phoneline is also really good. Do let us know if you have any questions at all.

In the meantime, sending lots of understanding hugs.

xx

Hi Sandytoes

Thanks for your speedy reply :slight_smile:

Yes, I do have a strong family history - and that’s what’s making me think mastectomy is the best option. Haven’t really enjoyed my boobs as much as I should have done though in these 27 years, seems a bit of a shame really.

You mentioned the expander - was the final result good? (Sorry if that’s a bit personal, what I mean is “were you happy with how your breast looked afterward?”) I knew about the lat dorsi flap and the DIEP flap, but thought that those were the only two options. But i don’t want to have a permanently painful back from the lat dorsi flap, and worry about what would happen if i had a baby with a DIEP flap. Although having read the RCOG guidelines on breast cancer and pregnancy maybe I shouldn’t pin all my hopes on the success of egg harvesting.

Was your surgery done by a plastic surgeon or a breast surgeon? Were you given a choice?

I’m really pleased to hear things have got better for you. That makes me feel better too :slight_smile:

Thanks for writing back. I will try the phone line.

x

Hi livia…
I was 10 years older than you a diagnosis with grade 1 hormone pos tumour… Didn’t need mx or chemo… Was 18month after mum was diagnosed with the same… Lumpecomy, rads and hormones.

Tested for genes through research study but none found… Roll on three and another tumour in other breast age 40 grade 3 triple neg BC. Tested of genes again this time through clinical labs but brca2 found… From dad not mum and no family history.

Had asked for double mx at this time but surgeon was keen to treat the cancer I did have rather than the one I might get in the future. So had lumpecomy, chemo and rads.

Planned double mx this year but diagnosed with recurrence 6 months ago… Just finished chemo and due to start rads on Monday.

Take care
Lulu xxx

Hi Livia

so sorry that you have had to join us but you will find that this site really helps.I was diagnosed on the 16th feb with grade 2 bc came as a total shock but both my auntie and my nan on my dads side had breast cancer,I am due to have my op on the 5th march which i can’t wait to get over and done with so i can find out what treatment i will be having,I’m also getting married in July so it couldn’t have come at a worse time.Sending you big hugs
xxx

Hi Lulu and hi Zumba

Thanks for your messages.

Best of luck for your op, Zumba - big hugs to you too. This site has been really helpful so far.

Lulu - sorry to hear you’ve had another recurrence. I hope the chemo has been okay on you. Do you think with the benefit of hindsight you would rather have gone for the bilateral mx right at the beginning? That’s what I’m leaning towards. And did you ever see a plastic surgeon? Or was it a breast surgeon? I’m guessing they have different perspectives. Top of my list of priorities is getting better, then minimising my risk of recurrence, and cosmetic effect is probably third.

Sorry for all the questions - I hope as time goes on I’ll have advice of my own to offer.

Best wishes to you all xx

Hi Livy, I was 29 when I was first diagnosed so not much older than you (am now 32). Like you, it was a horrible shock and I wasn’t prepared for it at all. First time round I had a WLE plus chemo, plus rads. 5 months later it was backand I then had a mastectomy with immediate reconstruction - ld flap. It’s a big op but I’m really pleased with it. I still have the expander implant which needs changing for something more permanent really but - apart from the lack of nipple (really couldn’t be bothered with the faffng about having a nipple reconstruction, seems a bit pointless) its v good.

I’m also triple negative and, because '‘only’ my mum had had it, in her 50s, I wasn’t deemed at risk enough to warrant a genetic test. However something made me fight for one, largely as I’d read a lot about the link between triple neg and brca so after much arguing with my onc’s registrar, they finally referred me for a test which then came back positive for brca1. That same week I was rediagnosed and the plan was to do a bilateral mastectomy. Sadly though it was too late and my ct scan showed lung secondaries which I’ve had since september 2010. The bizarre thing is that the brca gene came from my dad and because all his family is now dead, we don’t know how far back it goes. Certainly no females on his side ever had breast or ovarian cancer so the geneticist thinks it may have been passed down the male side predominantly…

Obviously hindsight is a wonderful thing. I was never offered a mastectomy at the start and foolishly, I didn’t ask. I just went along with what they said. You sound well-informed and like you’re leaning towards a double mastectomy. No-one can tell you what to do, I guess go with your gut. Surgery is excellent these days. Good luck. Chemo really isn’t too bad - just hand your life over to the docs for a year and give yourself the best possible chance. If you lose your hair, it comes back really quickly. Scars heal. My backwas agony for the first couple of weeks after m surgery but now its totally fine and im back playing netball and chucking balls all over that court. Time flies and before you know it, it’s over although obviously it doesn’t feel like it at the time. Xx

Francesca your genetic story sounds so similar to mine… Mum had BC in her 50s but got brca 2 from my dad and no BC in his family.

I was wondering how you were getting on as I know you used to post on the TNBC recurrence2ndry thread. Hope things are stable for you

Lxxx

Hi Livy,

My expanders are temporary to stretch the skin (had to have some skin taken as some was affected by the cancer) - I will have a DIEP flap recon in a year or so. My surgeon did the expanders but a plastic surgeon will do the DIEP. I am very happy with the results. They give me great shape under clothes and in bras and bikinis. Naked, the scars are really neat, but they’re a bit ball-like - very prominent and rounded!! They do feel a bit weird to touch though as they’re quite hard. I’ve been told they will soften a bit. I am also pleased that they are symmetrical.

What’s your treatment plan? I had chemo prior to surgery which, along with them being able to monitor that the chemo was working, meant I had time to get my genetics test back and research surgery and recon options before my surgery.

Whereabouts are you based? I would strongly recommend one of the BCC Young Women Forums if there is one coming up not too far from you. I went on one last year about a month after being diagnosed and found it really helpful. Along with meeting similar aged girls who I still see regularly and lots of useful seminars, there was a reconstruction seminar which went through all of the different options with pictures and there were girls there who’d had it done and were happy to show us - and they honestly looked fantastic. The weekend was a mine of information for me and a real turning point. Before then I’d been thinking I’d end up with Frankenstein boons with loads of scars and stitches! But they do amazing things nowadays.

It’s all so overwhelming at the start, but things will feel more manageable once you know the plan and regain some control.

Hope you’re coping ok and that you have lots of love and support.

X

Fran…I think you and I might have a friend in common…!

Hi everyone

A bit of an update to start off with. What a week. Went to see the oncologist on Monday and he said he will probably prescribe FEC (nothing definite until the pathology is back) for me. He also said something quite interesting: that the genetics testing is somehow “better” if it comes back with a positive result, because a negative result doesn’t necessarily mean there’s no genetic component to breast cancer, it’s just that the right gene might not have been identified.

I was lucky that a friend-of-a-friend is a plastic surgeon and I was able to have a long chat with him on the phone: he said just to go ahead with the WLE now, because then at least something is being done, then to come back and have the mx and reconstruction after the chemo - there are no disadvantages to doing it this way, apparently. I’ve been looking at the DIEP flap reconstructions and some are really excellent.

I had the WLE on Friday. Still a bit sore when I move my arm, but certainly not unbearable. I was going out of my mind with worry beforehand, but had a really patient and nice anaesthetist. Then was “off my head” for several hours afterwards - some of the text messages I sent after my operation were hilarious.

So… the plan as it currently stands: WLE (done), egg freezing, chemo, bilat mx and reconstruction. I’m trying to avoid rads. I’m lucky that the doctors seem to be listening to what I want. I won’t be able to start chemo until the egg freezing is done, but I’m okay with this.

The next thing is to sort out the rest of my life: I’m a mature student at uni, and the uni are pressuring me to make the decision about taking time out. But it’s a hard one to make - uni has been a part of my life for 7 years now, it’s part of my identity, and stopping may just be one thing too far at the moment.

Have any of you had FEC chemo?

Sandytoes - I’m based in Bristol. I think the Young Women’s forum is a great idea. I will keep my eyes open for any that are running.

Francesca - thanks for writing. I’ve had a lot of discussions this week with a lot of different people with lots of different opinions, but I think you’ve made me realise just how aggressive I need to be with my treatment. So I’ve made the decision to have a mx and reconstruction. It’s not going to eliminate my risk entirely, but it’s doing as much as I can.

Lots of hugs to everyone. xxx

Hi Liv, glad you are coping after the WLE. Yes, I think I’d agree re the ‘good to get a positive result’ thing in some ways. A friend has a massive family history - virtually every female in her family is BRCA yet she is not, and she was also 29 and TN when diagnosed. That’s got to be harder to get your head round! I really hope I didn’t frighten you - clearly not everyone is the same, I was just very very unlucky that my first oncologist didn’t really take me seriously and like I said, hindsight is a wonderful thing.

Lulu, hello - I’m OK thanks. Just waiting for a date to start eribulin, will know more tomorrow when I get my CT result. I had 3 months on tax over Christmas, it was dreadful and didn’t work anyway so I’m glad I don’t have to do any more :slight_smile: How about you?

Sandytoes - really? Am racking my brains who, although as we know, it’s a fairly small world when it comes to this stuff!

Francesca I hope you find the erubulin easier to cope with and I hope it works better at attacking the squatters than the tax.

Iv finished my chemo now and halfway through 20 rads… So all going well here.

Liv glad your team are listening to your wishes and hope the treatment all goes well… Glad your recovering ok from your wle.

Lxx

Hmmm slight spanner in the works - was due to start eribulin today but hospitalised with seizures on Saturday and a scan has shown brain metastases. Just waiting for a referral to a brain specialist hopefully this week then should know more. Bit of a shock obviously but still lots they can do

Oh no Francesca I’m so so sorry to hear you have brain mets now

Have you spoken to Tina (gingerbud) recently as she too has been diagnosed with brain mets a few weeks ago and just had wbr so might be able to give you some advice.

Take care
Lxxx

Am just waiting for the results of an MRI - ct scan showed just one legion, in which case they may opt for gamma knife over wbr. Been referred to what sounds like a very good brain hospital so am happy it’s being escalated. I know of a few people who have had successful treatment for brain mets so all no lost yet

Good luck with the MRI results fingers crossed its just one lesion.

Lulu x

Dear Francesca

I am sorry to read about your new diagnosis, if you feel it would help to talk things over our helpliners are here to offer you further support and a ‘listening ear’

I am posting to the BCC secondaries web page where you will find more information and support ideas:

breastcancercare.org.uk/secondaries

Take care
Lucy

Hi lulu, just a quick update from me - I had surgery on Tuesday to remove the tumour from my brain and was home by Wednesday. Bit of a headache obviously (13 staples in the back of my head, ouch!) but other than that, no real problems. Early feedback is they think they got it all, seeing onc next week to see when we can start on eribulin as planned. Touch wood, it’s all looking positive. It’s amazing what they can do these days! Hope you are ok? Xx