I was diagnosed with breast cancer last month and had a lumpectomy two weeks ago. My follow up appointment was yesterday and I have been told that my lymph nodes are clear (only a couple of cancer cells were found in the sentinal nodes) but my tumour was bigger than expected, 3.5cm rather than the 2cm they initially thought from the ultrasounds.
Because of the size, and my age (I’m 39) I’m facing six months of chemo followed by radiation therapy, and the option of a mastectomy has been given. I’m really unsure about the mastectomy, my surgeon said she had to tell me it was an option as there is a risk of a tumour returning, but I have no idea what percentage chance that would be. Should I go through another operation and lose my breast when I don’t know what the chances are of a tumour returning?
Other things I have to consider are where I will have my treatment, as I’m a New Zealander who has been living in the UK for nine years and my family in NZ are pretty desperate for me to go back for treatment (it was a bit of a drama before my operation explaining that I didn’t think it was practical for anyone to come all this way to be with me for the op! As it happens I have some brilliant friends here who looked after me and the surgery went better thank I was expecting thankfully). I’m actually keen to go back as well, especially as we’re heading into winter, plus I definitely think I will need my family to support me through this. But six months is a long time and I will have to do things like putting all my belongings in storage, because I flatshare, and deal with my work and extended sick leave. It’s all a bit daunting to think about right now.
Then there’s egg harvesting to consider. I’m single and childless but definitely want to have children if I can, but by the time the chemo/radiation and hormone therapy (I’m ER+/HER2-) are done I’ll be knocking on the door of 45 so will it be worth the bother? Of everything I’m going through I think this is upsetting me the most because I want to be a mum so much and I already get very upset at the thought of it never happening (all my own stupid fault of course!)
I had thought I was dealing with things ok up until yesterday but my appointment has shaken me up and I’ve been a bit of an emotional mess all afternoon (and watching Eastenders last night set me off again!) I’m trying so hard to be positive, and I have a great ability to look at things logically and keep things in perspective, but I just feel so wretched now.
So sorry you find yourself with us but there is so much info and support on here for you.
My story is similar to yours apart from tumour size. I had WLE & SNB 1st sept and am starting chemo on friday, 3xFEC 3xTAX 3weekly followed by 3 weeks of rads and 5yrs hormone therapy as mine is oestregen positive.
Your post struck a chord with me regarding the fertility. I am also childless at 37, tried to conceive for 2 years, finally fell pregnant only to miscarry at 7weeks was so devastated then shortly after i was facing this nightmare. I was offered the chance to harvest eggs but i chose not to go down that route when i read what was involved and i just wanted to concentrate all my energy into getting through BC treatment. This is a very personal choice though if you want to harvest eggs, go to the appointment and talk it all through. I dont think i have fully dealt with the fertility issue yet, ive kind of put it in a box and hidden it.
Cant help with the relocation side of things, hope you can talk it through with your family and friends and come to a clear decision.
Thanks for your reply. It’s reassuring to know there are people going through the same scenarios and this forum is so helpful when there are so many questions to be answered.
Having read a few more posts on the fertility side I’m actually starting to fall on the side of not doing the egg harvesting. It does sound like an awful lot of kerfuffle and I wouldn’t want it to delay my treatment. I think I will leave it to fate after treatment is finished, I’m fortunate that I have obscenely regular periods and I know I’m still ovulating, so maybe that will help my chances (who knows!) although after a Skype call to my parents this morning my mum thinks I should do it, but she wants more grandkids so has a vested interest, bless her!
My big dilemma right now is really the mx question, do I or don’t I? Given that my nodes were clear and the surgeon got good margins, is it really necessary? My paternal grandmother had bc when she was in her 80s but there is no other family history of it, I don’t know if that is a factor.
I should probably expand on my diagnosis and say the cancer was invasive ductal, grade 2, unsure of stage as haven’t been told but it was 3.5cms and I’m ER+/HER2- and as just mentioned nodes clear and good margins. If anyone has anything they can advise here that would be great. I’ve left a message for my bc nurse to call so I can ask some questions as well.
I think they have to tell you that mx is an option, as we are all at some risk of reoccurrence. My lump was 2.4 cm, grade 2 er+ and her neg. No node involvement and clear margins and mx hasn’t been mentioned again, and I haven’t considered it. I did choose to have chemo as I was borderline and then I will have rads and tamoxifen.
You might want to talk it through with the helpline here, they are very good.
Chance of recurrence with lumpectomy and rads is about 10% and with mastectomy about 1% but please note that there isn’t a survival difference. If your tumor were close to the chest wall, that might have a bearing because either way, you’d still get the rads. Women’s fertility declines fairly rapidly at your age. I think dealing with the cancer is your first and main issue altho harvesting eggs is an option and probably the only reasonable one. Having late babies can put you at further risk too for more bc. Mastectomies (radical) carry a 50% chance for post mastectomy pain syndrome (I’m in that 50% and was never told this number) while lumpectomy with SNB and rads lumpectomy with ANB and rads and possibly simple mastectomy carries an 11% risk of this.
Wishing you the very best! (my cousin had breast cancer at 39 many years ago…she’s 64 now and still cancer free)
Am writing this in a bit of a rush - apologies for brevity - but just wanted to mention a couple of things. Your situation is pretty similar to mine four years ago and fertility was an issue for me too. You might want to look into freezing your ovarian tissue rather than just eggs - it’s newer and not available in many places (Barts do it I think and you could probably get a referral there) but I think it’s got a higher rate of success and you don’t have to take hormones to stimulate the eggs. You could also look into taking zoladex - there’s a big study looking into whether taking it thoughout chemotherapy protects the ovaries. I had a nipple and skin-saving mastectomy which meant that I woke up looking pretty similar and that was very helpful psychologically. I can also understand your family wanting you home in NZ but I would research the operation options carefully - and the level of expertise. One of my surgeons was Swiss. I assumed that as such he’d be hugely expert. He was, but said that the standard of surgery was far higher in the UK - purely because of the density of population meant that they could really specialise. It might be worth getting a second opinion from an oncologist who specialises in younger women who have fertility issues. Do DM me if you’d like the name of mine. Chemotherapy is more standardized than surgery (oncologists can communicate by email - they don’t have to watch each other’s operations!) but it might be good to get a range of opinions before you go back if you do…
Poor old you - I really feel for you, particularly with family so, so far away.
I too am 39. Was diagnosed with invasive ductal grade 2 in July. Initially one lump discovered, but further imaging tests revealed two more malignant masses. I was offered a lumpectomy (tho God only knows what would have been left, removing three lumps and wide margins from a 34B!), but opted for a mastectomy with delayed reconstruction. And the histology report showed it was the right decision. While the lumps were small (2 less than 1cm, and the 3rd a 2.5cm area of DCIS), I had extensive vascular invasion, although no node involvement.
Were you offered mastectomy from the off, or only post lumpectomy? In other words, has the surgeon found anything post op that makes her wonder if mastectomy might be a better option? Do clear margins definitely rule out vascular invasion (which my oncologist puts at half way between no node involvement and some node involvement on the prognosis scale)?
It’s a difficult decision to make. Clearly I would much rather have my left boob in place, but I can honestly say that the scar is very neat indeed, the prosthetic is very comfortable and I’m back to doing what I want to do (bloody chemo allowing) - including gig rowing. The worst part of the op recovery was most definitely the underarm area where lymph nodes had been removed.
Don’t feel I’ve offered any useful advice, but sending you tons of good wishes. Good luck, you. xxxxx
I really sympathise with you. I am 37, single with a 10 year old daughter and my family live on the other side of the country. I was recently diagnosed with invasive ductal breast cancer, grade 3, non-hormone receptive and I am having WLE and SNB next week. I don’t have the HER2 results yet. I also would like the option of more children and am being referred to the fertility unit. My circumstances are such that I am not even sure if I want more children, but I do know, I would like to have the control and choice of deciding.
So far, apart from the shock of being told, I am feeling pretty positive and very lucky. It’s very small, 15mm, and my close friends have been more than incredible. My biggest worry is how to tell my daughter and trying to stop my family from whizzing down here unnecessarily, but I guess they have to do what they have to do.
This is the first time I have been onto the forums and would just like to say it is brilliant how supportive and honest everyone is on here.
Thanks everyone for your replies here, I appreciate your input greatly.
Re the mx option, my bcn has arranged an appointment with my surgeon on Monday so I can ask more questions and hopefully make a decision on it. I’ll be taking a friend with me as a second pair of ears this time. I’m thinking that if it’s been mentioned as a preventative measure then I can revisit it post chemo/rads and advice I’ve been getting says I need to get that underway quickly anyway.
I’m definitely going back to NZ for the treatment and my sister, who is a machine with stuff like this, has already done a heap of research and contacted one of the top oncologists in Auckland to arrange an appointment for me as soon as I get there. Basically, on several very practical levels it’s not ideal for me to stay in London for treatment (including having a less than ideal flat sharing situation, I would have to look for somewhere else to live anyway if I stayed here) and my family will be my best support while I’m going through it. I’ll be staying with my parents who live in a nice quiet area just north of Auckland, and I’ll also have my lovely (very fat!) ginger cat Jerry to keep me company and my adorable niece and nephew to play with (as long as they stay bug free of course).
I’m still waiting to hear from my HR person at work about what extended sick leave they will cover, I definitely get company extended leave that will almost cover the six months of chemo, but need to know if they will extend their discretion to cover the further couple of months of rads. I think they will as they have done this on previous occasions with other staff.
It’s been a pretty dire few days though, I’m feeling a bit better about things today but have been bursting into tears at the drop of a hat and not sleeping because my brain won’t switch off. I’m looking forward to the weekend though, I’m catching up with and good friend who has recently had a baby girl so that will be a nice distraction.
I hope that today’s session provided reassurance. I remember the time around my diagnosis and operation as absolutely awful but things did get better as soon as I started treatment. Options for treating breast cancer have improved enormously in recent years and so have fertility treatments - if it helps, one of my friends had her first baby at the age of 47 - and she certainly wasn’t trying to get pregnant. It’s also one of the ironies of breast cancer that Zoladex and Tamoxifen are also used to treat infertility.
Hi
Luckyin reading sorry to see you on here but welcome!
Our circumstances are almost identical although I’m older (44).
I had a small invasive lump 1.4 cm , grade 3 invasive, no node involvement and neg to hormones.
I had a mastectomy but only becuase I also had wide spread DCIS as well. I also had immediate reconstruction.
I would just like to say that prior to all of this words like cancer, chemo and mastectomy scared the life out of me but it’s surprising how you DO adapt.
Don’t get me wrong, it has been bloody hard BUT the mastectomy really wasn’t as bad or horrifying as you imagine.
My new boob is still healing but is very pert (unlike the other one!).
I just wanted to reassure any girls faced with these ops.
Big love.
Sarah
xxx