Hi Widgetjinks,

No doubt someone will come on at some point that has had the bilateral situation and will be able to give more specific help but I just wanted to say a little hello.  You're in a good place here, most of us have heard the words "you have cancer" so have felt much like you do now, and there are some great people on here to support you through it.

I'm in your camp of having had no symptoms either and my breast cancer was discovered at stage 3 (around 2 months ago now), it's just the way it is for many of us, we only get 'ill' when the treatment starts.  Mine is only in one breast but has already spread.

Try not to worry yourself about the unknowns just now (chemo/radio etc.) much as it's hard.  I've found my chemotherapy quite 'easy' to be honest.  We are all so different and on different types of chemo so if you have heard any horror stories it's best to put them to the back of your mind and just take the treatment as you find it when you're the patient.

It's no wonder that you're not sleeping and I wonder if focussing your mind on some pro-active steps might help you get through the next short while as you wait for treatment to start?  There are things you can start doing now to help with your treatment, do just ask if you want some tips on things you could be doing.

Best wishes,

LJx

 

Hi LJ..

Thankyou for your time in replying.  I don't know what to say with the problem I've got..but you are right as I've read some frightening stuff on the net... But it's only me that seems to have cancer in both breasts! . I'm fit and healthy, like yourself with no symptoms at all... but could do with loosing a bit of weight mind you. Today, I did a 4 mile walk with my dogs at 5am because of the heat, but then I do that most days plus swim and aqua aerobics... I'm not a keep fit fanatic, far from it, but I don't feel ill at all... I'm so amazed at this and bluntly its rocked my world...

I'm pleased to note you seem OK on chemo , will you be having an op to remove it? My doc has ruled out chemo for me and I've been told its three weeks of radiotherapy, however, when I next speak to him before the op on the 2 August, I'll be asking how he can define my treatment post op as he plans on sending off my cancer, to find out what cancer it is plus  2/3 lymp nodes from each arm to ensure no stray cells are seen?

Its a worrying time for both of us but this time next week it will all be over... The op I mean... Take care and best of luck with your treatment.. Xx

Hi again WidgetJinks (love the name choice :) )

Thankfully although your type is quite rare it seems you're not alone.  I did a search on the forum and found this https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/secondary-breast-cancer-23#post-622311 which is quite recent.  The person is at a different stage in the journey to you but may appreciate speaking to someone else who has the bilateral diagnosis.

Are the tests to find out if you have two cancers that have occurred at pretty much the same time or if it has been a spread from one breast to the other?

They were initially concerned that my cancer was bilateral, after the mammogram they had to run 3 other scans (all using contrast) to rule out cancer in my right breast.  And the reason for that is also the reason it got to stage 3 in my left breast without me feeling a difference between the two breasts, I have really lumpy, glandular tissue everywhere.  It's why I've been asking for the last 10 years for a referral for early screening and then this year when they finally did it I already had stage 3 bc!  I haven't been angry about that but I suspect my family will be very angry if I don't beat this given it could have been caught earlier and I'd tried to get early screening.

I will have a mastectomy, all being well, after 9 more rounds of chemo.  They have pretty much agreed to do the other breast too but won't do it at the same time, so sometime next year for that.  I was referred to a genetics consultant in London (over the phone consultation) and I am now being screened, as is my older sister.  If mine comes back positive for one of the 4 known mutations then my mum will be screened (it's likely on her side) so we can then look at the risk for cousins etc.  On family history alone though the geneticist said her gut is that it is genetic, even if it isn't down to one of the four currently known mutations, so she said they would happily advocate for me to have a double mastectomy and oopherectomy (since my cancer is oestrogen +ve) if I meet any resistance in getting those surgeries.

After surgery they will reassess and radiotherapy is likely for the breast and lymph nodes then possibly more chemo.

The only 'symptom' I had was excessive tiredness, but at the time I put that down to working split shifts (the shifts were so severe that I ended up with a 3-month migraine that caused a lesion on my brain stem), but it may have been the cancer as well?  Hard to know.  I'm not quite as fit as you, although getting there now that I've changed to a job more conducive to being active.

All the best for your op next week :) and I hope the results come back the best possible.

LJx

Hi LJ

Frankly I haven't asked the doc if the cancers are the same or spread from one breast to the other. Actually I've assumed, as he said they seem self contained, that they are two separate cancers, but I guess, I'll be told post operatively... He has said that this can be treated and I cling on to that... 

I have read, or rather, began to read the thread you offered about another person who had bilateral breast cancer in 2011,but with the deepest respect to you, that lady and indeed everyone on here I just couldn't read it all.....i can't bear the idea that this might rear its ugly head again elsewhere within me... You see, as the doc has said it can be cured, that's what I believe, its what I have to believe as I'll simply drown in worry...

I'm so sorry I'm typing stuff all about me... I don't mean to be myopic

.. I sincerely hope you get the treatment you want and if you end up with a mastectomy... We'll I know it will be OK as my best bud had one last year for hormonal breast cancer grade 3. She had no symptoms but after a regular mamogram it was found... She's OK now..

Thankyou so much in taking the trouble to talk to me.. I really want to talk  to my husband and family but it's strange i really don't know where to start so I don't as life goes on...

It's my birthday on the 3rd August so I'm being taken out tonight and when I wake up on the 3rd it will be day one post operatively and I will be free of these two lumps at least... I'm going in as a day case to 7.30 start on the 2nd...

Xxxxxxxxx

Don't apologise, this IS about you.

Everyone is different, so no need to worry if you don't want to read the thread.  You can contact the author of the thread personally through this forum if you want, or just let your own experience guide you.

There will be plenty of people here whenever you need support, including me.

Happy early birthday wishes, I hope you make it a great night.

Wishing you all the best for your surgery, let us know how you get on.

LJx

Hi there

I’ve only just come across your post but wanted to offer some hope. I was diagnosed with bilateral triple positive breast cancer with a tumour in the same place in each breast in May 2017. I was initially told by my GP it wasn’t cancer because it was symmetrical and I was too young (33 at the time). My nodes were taken both sides and only had 1 isolated tumour cell. The tumours had popped up independently and not spread. It would be very unusual for a tumour in one breast to spread to the other but synchronous bilateral bc happens in about 1-3% of breast cancers.

My team have been incredibly reassuring and have told me that my prognosis is based on the size and pathology of the largest/most agressive tumour, rather than a combination of the two. Seeing as surgery went well and nodes and CT scan were clear, my risk of recurrence is low to medium. I’m currently NED, finished treatment last November (except Herceptin) - biggest challenge is dealing with side effects from anti hormonal meds or decisions about fertility.

Don’t Google bilateral breast cancer! The studies are based on very low sample sizes and old data. Everyone’s personal situation is different. I would recommend reviewing NHS predict model with your team if you want personalised information about risk of recurrence and survival. 

Since my diagnosis, I’ve met several bilateral ladies and all are doing well. I think of it as a weak spot in both breasts that has now been removed. I hope you are doing well and treatment is being kind to you. Sending love and hugs.

Sarah x

Hi I was diagnosed last June with bi lateral breast cancer as well I luckily was a the doctor getting a skin check up when I mentioned I have a sore chest they felt it was muscular but referred me anyway. I went to see the specialist and on examination all was well no lumps or anything but they did do a mammogram based on my ago 48 as the mammogram age had been lowered so then that led to ultrasound and it was the mammogram that showed the mass on the left and where I was sore on the right hand side was just muscle tare however he did on investigation find another cancer on the right side they did the biopsy and both sides turned out to be cancer. So follow up was mri and ct and then surgery to remove both lumps and lymph nodes (sentinel ) 3 on one side 4 on the other and then as they didn’t get clear margin on the right another surgery to fully remove. I then had 3 weeks of radiotherapy which was ok and now it’s almost a year on and just had my first mammogram and ultrasound and all is clear so very happy about that . I am on tamoxifen but that has been fine no hot flushes or bad side affects so fingers crossed that continues I am have had genetic testing done with the results due back  at time as they did feel it’s very unusual to get bilateral when your young so let’s see what that comes back with but could just have been unlucky. Having great doctors and oncologist has helped thankfully I didn’t need chemo. I was lucky and had private medical insurance so they have always been good in terms of swift treatment and having results back really quickly same day on scans etc and having the doctors mobiles when you have those bad feelings and they were able to let me know all is well has been great. So when your in the treatment is awful but now I look back to last year and think wow did that really happen. Currently having the tattoos removed that they put on for the radiotherapy as I don’t like seeing them but that’s just some laser treatment and is free of charge. Anyway hopefully your through the worse. I try not to think too much about it but look it’s a year on and clearly I am thinking about it ha ha but it’s all positive x 

Hi,

I was diagnosed with small low grade dcis in both breasts in April this year. I was offered lumpectomy or mastectomy with implant reconstruction. I chose lumpectomy as after looking into it didn't fancy dealing with complications of implants and mastectomy as well as everything else especially as consultant said outcomes cancer wise were same for both so it was a personal choice . Unfortunately results surprised everyone as invasive and sentinel lymph node positive on left side. I had lymph node clearance and agonising wait for results but all the other nodes were clear. No chemo but waiting for radiotherapy and got ten years of hormone treatment.

I am not sure why I was offered mastectomy and and neither of you two were?

I was diagnosed just over a year ago with bilateral breast cancer had tumours removed and then radiotherapy. All cane as a total shock and have been back to hospital since to have cysts removed was in total panic cause thought cancer may have returned. I managed to continue working through treatment and have tried to remain positive throughout awaiting  appointment  wed 18th for mammogram year after diagnosis which I’m getting nervous  about  good to hear posts from others in same position find it hard to talk to family as don’t want them worrying. Thanks x

Hi 
I was diagnosed with bilateral breast cancer in Jan 2010 firstly triple negative grade 3, sentinal node positive had five months chemo then lumpectomy at same time lumpectomy to other breast due to calcification results came back new primary breast cancer ER positive (was extremely lucky to have such a fantastic medical team)  had radiation to whole of chest have been on tamoxifen for nearly ten years now to be completed in Aug 2020. Just wanted to say there are fantastic treatments out there and to stay positive. Always self check each week and have your regular mammograms. Wishing you all the best of health for the new year and long future ahead.