I was diagnosed on the 8th August with BC and a very quick 9 days later had a skin sparing Mx on left side with immediate recon and had a sentinal node biopsy. Had a 4cm grade 3 ductal invasive tumor. Biopsy showed nodes were clear as were margins but vascular invasion was identified (not sure what that means really).
Recovering slowly from the op but finding movement in arm poor and HATING the fact I cant even pick up my daughter!
Start Chemo in about 3 weeks (prob FEC-T but will know exactly tomorrow).
Would love to hear from others in a similar position.
Very scared of the Chemo which will last about 6 months!!!
Doc offered the removal of 2nd breast as a preventative surgery, what are your thoughts on this, I think I may go ahead to try limit worry of reoccurence when permanent implant is put in.
Worried about fertility as my hubby and I would have ideally liked another child but worried about risks of IVF and hormones etc also a bit traumatic doing all that in the next 3 weeks.
Sorry lots of question but just generally very concerned about everything!!!
Me again! I’m 33 and am nearing the end of my chemo which I’m having prior to surgery.
I’m afraid this is going to be a quick posting as I’ve got to dash to the hospital for bloods in time for chemo tomorrow. I just wanted to let you know that I was TERRIFIED of the thought of chemo but haven’t found it bad at all and have met some young women who have worked all the way through. Some people do suffer with some side effects - but if you do you just need to make sure that you tell your breast care nurse or oncologist as they have an army of additional drugs to combat the side effects! I’m also having preventative surgery and very happy to discuss this with you - just PM me.
My tumour is receptive to oestrogen which meant I couldn’t harvest any eggs prior to starting chemo as the additional hormones would have fed my aggressive tumour. However, as you are triple negative this shouldn’t affect you - I would seek advice about this ASAP as if you do go down this line it does take a little while to get the wheels in motion and to harvest the eggs. I am devestated at the thought of not being able to have children - but just have to keep my fingers crossed that I am one of the lucky ones who don’t end up infertile after chemo.
Unfortunately there are plenty of young 'uns on this forum all facing similar dilemnas. It is great though that we can all support each other.
So sorry I couldn’t write more - send me a message if you have any questions. Must dash or will be told off for being late (again!).
Forgot to say - this is really useful for understanding your pathology report including vascular invasion. It means that cancer cells might have entered the blood stream - but this is what chemo is for - to mop up any stray cells that have escaped.
Hi to you I just posted on your other ? about ‘preventative MX on other breast’ …hope it helps JX feel free to PM me anytime but am away soon so will reply on return XXX J X
Hi there
sorry to hear your news but sending you very best wishes for your recovery + treatment. I was also dx with tnbc when my little boy was 8months old. It’s hard work getting through chemo etc but it wasn’t as hellsh as I expected. I felt ok most days but had lots of help from my mum + mum in law.
In terms of preventative surgery, I would Not think about that at the mo as you have enough to worry about. Get through ur treatment first then u can focus on ur options. The ivf decision is a hard one- we decided against it as I was keen to start chemo asap. We had also endured lots of fertility treatment in the past + I felt I had been through enough. This is a decision only you + ur hubby can make I’m afraid.
Best of luck with everything keep us all posted on how ur getting on.
Tina x
I am 30 with no baby but a demanding job - so similar in some ways!!
I was also diagnosed with triple negative invasive ductal BC.
my tumour was small so I had a lumpectomy. I did fertility preservation and and am now doing FEC T .
It was all very quick - recovered from the op, straight to the onc to discuss chemo, straight to fertility specialist, about 3 weeks later I had frozen what i wanted to freeze and had started chemo. A whirlwind yes but I am very glad to have been able to do it.
Chemo is o…k… I am working through about 2/3 of it - maybe even 3/4.
it is manageable. Sometimes I feel so close to normal I forget all about it or just feel incredibly positive , verging on, dare I say it, ‘empowered’ by just how OK I am. And sometimes…like today when the 3rd treatment is approaching I feel slightly ‘negative’ (diplomatically put) about things. But i know it will pass. Seems like we have some similar exp so please if i can share any exp in more detail just let me know. PM me if you like.
i too have had a TNBC and more recently a recurrence of it… prior to that i had a hormone positive tumour in the other breast… i am genee mutation carrier of a brca 2 fault.
do you have a family history of breast or ovarian cancer? without a faulty gene or a family history the chance of getting a cancer in the other breast is much lower… around 5% compared with about 40-50% for those with gene faults.
young age of onset and TNBC are more likely to indicate this could be genetic… why not see if your team can refer you to genetics for gene test… many of our ladies go down this route and if no gene is found they often opt to preserve the other breast whereas those who do have a gene change will very often choose a contra-lateral mastectomy.
i had a lumpectomy both time and was planning mastectomy next year when i got this recurrence… i am going to have surgery to remove the cancer in the next few weeks and have treatment and will have mastectomy after the treatment is over… get rid of the cancer first and then deal with the bits may turn bad over time… they arent a priority at the mo.
as for the fertility as some of the girls have said if the tumour is TN then its not affected by hormones so IVF wouldnt stimulate it, although at 29 its much more likely that your fertility will return after treatment tehre are never any guarantees.
Hi,
I was 34 when diagnosed last September, with Triple negative 2cm grade 3 tumour, had WLE, reconstruction, chemo (FECx6) followed by 33 lots of radiotherapy (25 + 8 booster)
I decided to go down the egg freezing route, and they were really good and managed to get me in really quickly, but it does depend where in your cycle you are, as you have to start taking the hormones within a few days of the start of your period. My periods stopped about the time of my last chemo, but returned a couple of months later which is a good sign. At the time there was also the mention of using Zoladex to protect my ovaries during chemo instead of egg freezing, this may be worth asking about if you don’t have time for egg freezing.
I have just had a referral to the genetics clinic, so hopefully will find out whether mine is genetic or not.
Hope all goes well for you and chemo isn’t too bad, I slept a lot during the first week after each of mine, but then was back in work for the other 2.
Jen
my name is Jo and I was diagnosed with tnbc earlier this year in feb just 6 weeks after giving birth. I had a 28mm tumour removed with a WLE and a sentinel node biopsy. It is a scary time but I credit my baby with getting me through all the chemo etc if I hadn’t had him at the time I think I would have concentrated on nothing else but the cancer whereas I just got on with bringing him up. I’m now half way through my radiotherapy and just want to say that there is light at the end of the tunnel, I know it may not seem that way some days but you will get through it and chemo is different for everyone, some people dont experience side effects as much as others. Try and stay positive and feel free to pm me any time you wish. Thinking of you all.
I was also diagnosed with TNBC at 34yo in April 2010 and my second child was only 6 months old…I was still breastfeeding at the time and it came as a complete shock.
Check my profile if you want to know what tumours, op and treatment I had.
Due to my age and type of cancer and despite the fact that there was no family history of BC, I was referred to the Marsden to have the genetic test but only at the end of my treatment (March 2011). I am now waiting to hear the results.
My periods returned exactly 1 year after I started chemo and are now regular but I have been advised by my onc not to get pregnant for at least 3 years after my chemo end-date…
@Mmcglew, I also had chemo for 6 months (4xFEC and 4XTaxotere) and it was manageable. I maintained a more or less normal life throughout and worked full-time during treatment (less tiring than looking after my 2 children). We are all different but so far, those of us who are younger seem to cope well.
I would question the removal of the second breast as preventive and ask what’s the rush without knowing if you are a gene carrier? it is a big operation and that might delay your chemo start date.
Best of luck to all of you out there and lots of love,
V xx
So sorry to hear about your diagnosis and the spanner-in-the-works of second baby.
Just thought I’d offer some encouragement re treatment as I had 4xAC while I was pregnant last year, then 3xTAX after the baby was born. It wasn’t nice, but I survived. We also have a daughter who was 2 at the time.
My advice would be to get as much help as you can. Chemotherapy is rough, although as you see some people get through it and hardly even notice! But it is tiring, so if you can rope-in family and friends to help with the baby, it will help you no-end.
I came through the chemotherapy still fertile, so there is hope that your ovaries will survive it.
I can’t imagine how you musst be coping. Good news for you though from a well seasoned chemo receiver. I have a rare and aggressive form of breast cancer , triple negative inflammatory. I have been on chemo since 2009 and had FEC, Taxodwew, Cisplatin , Navelbine and Abraxane … and a few I can’t remember… and there is no need to be concerned. Yes, you will probably lose your hair, but the wigs are fabulous. Take all the anti sickness offered before you get any sickness and rest plenty. radiotherapy is a breeze in comparision to chemo, but believe me there are so many medications to help you that tales of chemo being horrific just need not be the case.
Best wishes for a full recovery and hope that time pases quickly for you.
I am a lot older but i am being treated for a grade 3, 4cm plus tumour with vascular invasion. 6: 24 nodes pos. The FEC so far has been little trouble. Drink ++( and pop in the odd wine) there are no sure things with this crap disease but sometimes chemotherapy is more effective with the faster growing cells ie Grade3 then grade 1, you will look at your lovely baby and cry lot for all sorts of reasons. A councillor may help - you don’t have to be falsely brave for them.
One of my patients had three children two following chemo and they are in their teens now. Her lump whilst not inflammatory was over 5 cm and she was node positive.
The FEC will make you tired but listen to your body rest have a Daily walk and socialise as much as possible on good days with the germ free!!.
Roll on November. The helpline are good at bringing one back to normality. Do contact them with the most trivial of fears. They are superb
hi have just read that you have inflammorty breast cancer, i was diagnosed last sept i had chemo which ended in jan thenmasceptomy and reconstruction then afer rads for three weeks i have been on herection since dec and that finishes in jan 2012, but now i had twn spots on my reconstruction breast and the cancer have come back i am sorry worried the appointment for the scan cant come quicker enough, have you heard of anybody else that had this, sorry for rambling on.
WOW! Thank you everyone for your messages, all really helpful and encouraging! To be honest I didnt expect to get half as many replies and hence havent really checked!
Since I messaged (which was in a panic pre chemo), I have had some time to think and come to some decisions. I decided against the egg fertilisation and have opted to try Zoladex as a precaution. Although in saying that I have a great FEAR that pregnancy is what started the cancer and therefore am quite happy to just have one child (who is gorgeous and amazing!). Just so scared of ever having to go through this again & I have an association that maybe only councelling will help!?
Chemo is going OK! The good days are good but the bad are really bad! Only had 2x FEC so far and already had an infection which made me feel like I was dying in the matter of hours after feeling really well! Ended up back on a drip and with loads of meds was back feeling semi normal the next day. But I have had a bit of everything, nausea, sore bones, mouth ulcers, fatigue etc etc. Which each on their own I can manage but the thought of another 2 FEC and then 12 x taxol is making me really worried and on those bad days I wonder if I will be able to keep it up at all!?
Aaaaarggggh why does Chemo have to be such a loooooong road!
Anyway enough moaning from me! Thank you all for your words of support, I really appreciate it!