I’ve looked for an introductions or hello this is me thread but couldn’t find one, so apologies if there is one somewhere and I’ve missed it. I’m new to this forum, 37 years old, single(newly dumped just before diagnosis, excellent timing) and have just been diagnosed with invasive ductal carcinoma with DCIS Grade 2. Have had a lumpectomy and second biopsy (scarily the first core biopsy came back B1 - benign.) Am scheduled for a mastectomy in just over 2 weeks and axillary node sampling. Then it’s over to the oncologist, who I haven’t met yet.
The diagnosis was a shock; I’d only had one symptom - a one off episode of nipple bleeding. No-one felt a lump. It was discovered on ultrasound at a routine visit to the breast clinic. I don’t think it’s really sunk in, I suppose it will when I’m one-boobed. Would be grand to talk to others in the same situation.
I’m ok with the technical stuff, I work in the medical profession, and I have a good support network of family, friends and work colleagues, but it would be good to be able to talk to people who are going through it too about all the stuff that no-one else can understand.
Cheers!
K
thought i’d say hello,
Sounds like i’m in a similar boat as you. I’m 35 had WLE and SNB in may - no nodes and clear margins - 11mm grade 2 IDC with DCIS. Started chemo 3rd july 8 cycles (on 2nd now). Also was just coming out of a relationship at the time i found the lump so am currently (happily) single though i have an 11yr old son.
So far its not been too bad - except waiting for results. Though there have been the odd few days where i have thought i may have been losing my mind, I also have fab support from friends and family and the great gals on here.
Were all in the same boat, I too had a WLE and node clearance followed by MX approx 14 days ago, had a post op check up today which involved some drainage (fortunately painless due to being still numb from surgery) meeting with onc this Friday which will be followed by start date of chemo next step into the unknown!! Advice and support is invaluable on here, been a great help to me and I’m sure all of the other strong women on here.
Hiya - I was in a very similar position to you - much to everyone’s surprise my first biopsy came back clear despite the tumour being 3cm. It made the whole experience feel very Alton Towers - after my diagnosis I thought that I had thought through all the possible scenarios (some of them very gloomy) but that one hadn’t occurred to me.
It was hinted to me that the clear biopsy was ‘an encouraging sign’ and I hope the same is true for you as well - my nodes were clear and I didn’t have to have chemotherapy although am on hormone therapy. Have you been told that you aren’t suitable for immediate reconstruction? The pre-operation period was by far the worst bit for me - after the tumour was removed I felt almost euphoric.
Thanks for the replies ladies :). You’re damn fast, I’m impressed. poddle, I was told I could have immediate reconstruction but ‘advised’ not to, as I don’t know what kind of treament I’ll be having post op. I haven’t got an appointment to see the oncologist yet, suppose they’ll sort that after MX. I think I’ve scared myself by reading too much around the subject; I work in health but have no experience of boobs (so to speak) but lots of experience of cancer. My mum has ovarian cancer, my cousin malignant melanoma, and the majority of the patients I see have cancer and are having staging scans (I work in radiology.) So it’s good to hear from other gals going through the same thing and getting through it.
pixielox - how did you find the chemo? My colleague reckons that as I’m ‘young’ (bless her) they’re likely to offer me chemo as the younger you are the more aggressive the Tx. My lump was removed without clear margins so I’ve opted for the MX and then any other treatment offered.
poppet75 - is this your first bash at chemo? Good luck with it.
welcome back poppet! Glad to hear you are recovering well after the op.
xx
Welcome K. I’m 36, 11mm grade 3 IDC, no node involvement. Had bilateral mastectomy 2.5 weeks ago, which I opted for as suspect my bc’s genetic (mother died of it at 41). Has anyone mentioned the possibility of yours being genetic, what with your mother having ovarian cancer? I’m awaiting an oncology appointment to discuss chemo plan, and guess I’ll be starting it in about 2 weeks.
Poppet it sounds like we’ll probably be starting chemo around the same time. I’m really dreading it (obviously!), so it would be good to be in touch with someone who’s at the same stage as I am in terms of treatment!
Pix, how come you’re having 8 cycles of chemo? What regime are you on?
Caro xx
Hello Hello,
Hope you dont mind me linkin into your messages.
Reading all of your comments makes me realise lots of people in the same boat biggest shock has been my age
I am 33 with two girls aged nearly 2 and nearly 4 and fortunately a very supportive husband.
My mum had breat cancer 6 years ago at 52 so know a bit about it. IWas diagnoised with breast cancer at begin of July aftyer finding a lump and since have had segmental matectomy senital node biopsy and 5 removed than further op last week to remove more of the margins around the 20mm tumour.
One thing that is driving me mad is the burning senstaion in my arm it is so sensitive any ideas on ways to improve, I am massaging and exercising it but its driving me crackers.
Have got to go back next friday to see consultant fingers toes crossed that have got it this time and dont need further surgery then onto the chemo.
Would love any tips hints on how to deal with things.
Still hasnt sunk in yet
Nicki X
Hi there Special K and all!
I’m in the same boat too… I’m 28 and a single gal, was dx late april, had my mx Mid May. Grade 3, 2cm. Started chemo on 1st July, and I’m currently 2 weeks into my 2nd cycle… so Pixie and I are at the same stage (how are you doing by the way pixie?)
All of this is such a slap in the face especially around diagnosis and surgery time, but things progress really quickly.
My aunt (on maternal side) had BC, but haven’t looked into any connection yet.
Nicki 6, I had that burning sensation too - it’s a pain in the arse isn’t it!!! I just persevered with the exercising and massage and it did go away.
Take care everyone and good luck
AM xx
Hi there special K and all
Same boat really, I’m 37, no history of BC, had lumpectomy on 29th May, 1.7mm tumour removed clear margins, 4 out of 5 nodes involved (gutted at this) and just had 3rd cycle of chemo yesterday. I have to have 8 cycles like you pixie. All going to plan as the ONC says! You will find some really good support on here. I could’nt have coped over the last 2 months. It certainly helps me to talk to people who are experiencing what I am!
My diagnosis also a shock as there was no lump just a small indentation which was the size of half a finger nail!
Nicki I had the burning sensation too around the scars - drove me nuts. Still getting twinges and stabbing pains too some 2 months on. Apparently it all takes time to settle down.
Take care all
xx
Hi all,
have just posted on another thread, but thought I’d say hello here as well. I was only diagnosed yesterday with a stage two IDC - 14mm. Booked in for an MRI on Monday and then a CT followed by lumpectomy. Bit worried as all the posts I’ve read seem to do things in different orders, personally I’d like the lump gone first, but hopefully that will happen within two weeks.
Definitely the worst thing is the waiting. I feel like I can’t concentrate or do anything else, yet when we do do things its a wonderful distraction. I have a fab husband and three children (13, 10 and 5). I’m petrified for them, I can see the look of fear in my husband’s eyes and it rips me to shreds.
I’m also in the middle of an IVF cycle and am having my eggs collected tomorrow - an extra kick in the teeth or amazing luck? I keep flitting between the two. Feel very scared as all the drugs I am on for IVF are sending my Estrogen levels through the roof and I don’t know yet if it the lump has estrogen receptors, but feel sick knowing that I am probably feeding the disease.
Postive vibes to all.
Alison
hello nicky 6 - have you got cording in your arm? Mine has eased over the weeks - i found the execises they give you a bit of a bore, but started doing tai-chi which seems to have really helped this problem for me. As for things sinking in, i’m on my 2nd chemo and think i’m still in denial, but with each treatment its getting more apparant!
AM - glad to hear your chemo is going ok. Not had a bad run so far myself - the main problem i’m having at the mo is being on my period at the same time as my ‘low week’…so i’m doubly moody, depressed and fatigued days 7-14!!! Had to go on antibiotics this week for an infection…my own stoopid fault for getting hammered at the weekend!! I tend to forget i’m supposed to be ill after a couple of ciders and carry on like before!
Caro - i never asked why i was having 8 cycles…i just assumed that was standard practice for EPI-CMF!!
hello hurdygurdy, i think Chemo is usually given first to reduce the size of the tumor, so i imagine it will be surgery first for you. The waiting is the worst…but once you are on the chemo-train its full speed ahead!! in fact i would go as far as saying waiting for results has been more traumatic than the treatment so far…once you have a treatment plan, mentally you know what you are doing is making you better, even if it makes you feel worse physically.
Good luck
pix
xx
Hello all,
Thanks for all your posts, my arm is starting to settle a bit, I dont think its cording as its just burning and sensitive, better if i wear a vest t-shirt. Am getting conflicting advice as to whether I can shave under my arem my consultant said yes but all info im reading says i shouldnt. Any advice??
Had a CT scan on wed which was a very wierd experience and got a bone scan on Monday, sounds like everyone does have things done in a slightly different way.
I have yesterday looked after my kids on my own for the first time since my ops and felt so much better for having a ‘normal day’ although totally exhauseted last night.
I am wishing the week away in the hope that when I see the consultant next week he has got it all and I can move onto the next stage and dont need any furtehr surgery.
Hi Hurdygurdy, sounds like you also have your hands full with the kids ect, its is hard seeing your husband go through it too as there is nothing they can do. I feel lucky my girls are only 2 and 4 and are not old enough to fully understand. Your right about the waiting
just wishing the days away.
Good luck everyone.
XXXX
Hiya all,
It’s true everyone seems to have different Tx in a different order. I had surgery first because they thought the lump was benign. Having Mx in 2 weeks - having a week off cancer this next week while I go on holiday and am not planning on thinking about the C word, just eating and drinking lots and getting a bit of a tan - then who knows what’s next. Grand to hear from you all on this thread and if anyone who’s recently diagnosed wants to ‘buddy up’ and share horror stories that would be smashing. Just send me a PM :).
Have started a blog to see if it helps to write things down as I’m thinking about them. Good way to keep friends updated without me keep having to repeat myself. Sometimes I just can’t be arsed talking about it.
caro111 I have mentioned the genetic link to the BCNs and they said I’ll be referred for testing at some point. My mum has ovarian ca (she’s having a staging scan next week, my poor dad is going to be in the middle of 2 of his girls and their respective cancers!) and her cousin had breast ca so there is a possible genetic link.
Can I ask about people’s experiences of mastectomy? Not been given a whole lot of info, think that because I work in radiology they think I know what to expect. But I don’t.
Good luck and thoughts to everyone, you all seem lovely!
See you in a week or so…
K xxx
hi all,
just wondered if anyone had booked onto any of the younger womens forums coming up in the next few months? I’m in the North so have booked onto the warrington one on 18th september - looking forward to meeting people in the flesh!
Special K hope you have a fantastic holiday!
xx
Hello girlies
Hope everyone is ok and getting through their individual stages of this BC crapness!!
Pixie, I’m booked in for the Warrington Forum too, posted off the registration forms the other day. It falls on my “good” week which is a bonus! Look forward to meeting you! I’m on my next swamp juice next week, is this the same for you?
Special K - have a brill holiday! You have yourself a good chill, and a good few bevvies! I know that the pending Mx must be really daunting for you. I remember how anxious I was 3 months ago but things do move quickly and you do find your strength to deal with it.
Nicki 6, glad to hear your arm is settling down a bit. In terms of the armpit issue… I got fed up after a few weeks and got the old razor on it! I was just super duper careful. Good luck with the consultation next week.
HurdyGurdy, Hope everything is ok with you. I definitely found/find the worst thing is the waiting, and agree with Pix, that the waiting can be worse than getting through the treatments and surgery. Good luck with everything.
Poppet, how you doing hun? I know you’re starting your chemo in a couple of weeks, hope you are ok. Look forward to meeting up for a brew soon!
Caro, how’s things with you? Hope you are recovering well from your op. Do you know your treatment plan as yet?
Big hello to Poddle and Jayney - how are you both getting on?
Have a good weekend and take care all
AM x
Thanks for all the messages ladies. Enjoying the sunshine this weekend and have a CT scan and MRI both tomorrow. Feeling quite upbeat about everything at the moment. Hope you are all making the most of the sunshine to.
Alison
x
hi special K
i was diagnosed at 37 with a 1.3cm grade 1 IDC and DCIS, node neg, ER pos in right breast… had WLE may 2006 and then rads and tamoxifen but no chemo.
then new primary diagnosed at 40 with a 1.9cm grade 3 IDC and DCIS, node neg, triple negative in left breast… had WLE may 2009 and just had chemo no 3 of 8 and due for rads afterwards.
my mum was diagnosed with BC 18 months before i got it the first time at age 57 but otherwise have no family hx.
it must be so hard for your family with both you and your mum going through treatment at the same time.
Pixie and i are on the same chemo regime… epi-cmf which is always 4 x epi and 4 x cmf… not sure how they work out who get what but the cancerbackup site is really informative about different regimens and what is involved.
i was told i would get chemo the first time because of my age because its unusual for somebody under 40 to get a grade 1 ca but as it wasnt so aggressive i didnt need it.
Ladies,
After somne advice, Had my consultation last night and every time I go the news seems to get worse, now after three ops already I am now told there is a lot of pre cancerous cells in the margins of the margin and would be advised to have a mastectomy. Which of course I am going to have. The question in my head now is do I have both of them removed??? My mum had BC 6 years ago and had one mastectomy and regrets not having this done at the time.
DOes anyone know if this is done is there then no chance whatsoever of BC returning??? I know its a big step but I cannot face the thought of going through this rubbish again in 10 years in the other side???
Help any advice would be greatly appreciated
I am meeting the oncologist on Monday to discuss before I make any decisions
Thanks
A very very fed up Nicki
Hi Nicki
So sorry to hear you’re having a cr*ppy time and have to have further surgery. I opted for a bilateral mastectomy, as my mother died of bc at the age of 41 so it’s probably genetic. Unfortunately, it doesn’t give you a 100% guarantee that the bc won’t return, but it significantly reduces the risk (I think it’s less than 5%). How old was your mum when she had bc? Has anyone mentioned the possibility of it being genetic? If your bc isn’t genetic then I don’t think I’d opt for a bilateral mastectomy, because the chance of a new primary tumour developing in the other breast is very small. However, if it is genetic, then there could be a 50% chance of a new bc developing, so a bilateral mastectomy would probably be worthwhile. Speak to your oncologist and ask their advice.
Good luck with your decision, keep us posted.
Caro x