@roylej - welcome to the club that no-one ever wanted to join! :(
OMG! It sounds like your surgeon (and possibly breast care nurse) are not very sympathetic to your plight .... I am sure they could/should be able to give you more information!
Feel free to tell us some more of your story so far - we have a few who've not had successful recons (was your recon/implants removed?) .... they may be able to advise you better with a bit more info ..... I know that those with implants don't usually have mammograms due to the chance of them bursting - even if there IS still flesh left behind .....
I am lobular (and mine was totally missed on the Mammogram & it was 'only just' picked up on the Ultrasound) - but I did not have a mastectomy .... and yes it is the sneaky one. Sadly, Lobular can also have a higher recurrence rate than other types of BC, even after a mastectomy (unfortunately) as not ALL flesh is necessarily removed from the chest wall.
Re knowing if it has recurred .... Definitely keep an eye out for odd lumps & bumps - You would also need to remain vigilant of any persistent aches & pains in your body that last longer than a few weeks - and if you DO notice anything untoward - ring your Onc and get bone density scans & MRI/CT etc, and get checked over by them as well.
Check out this post from 2019 (so relatively 'current') ...... when you are on the Discussion Page, you can put in the 'search bar' the words you want searched - I put in "Yearly Scan Double Mastectomy"
https://onlinenetwork.bcna.org.au/discussion/20422/looking-for-information-re-scans-or-ultrasounds-after-having-double-mastectomytake care & all the best .... xx
hi and thank you for your response x
I got told I was to have a masectomy straight away. I met a girl who had SIX tests and all came back negative and she knew there was something odd, so she paid for the biopsy to find out she did have Lobular Cancer, it had traveled to her shoulders and chemo and mastectomy was done.
With this the fear in me was huge, thinking how on earth did they miss It with all these tests, and thank god she persisted when they told her she was cancer free.
With this, I asked if I would be able to have both breasts removed and was told it was to late, but they would not forget me.
my surgeon was a professor and highly regarded, he took my cancer boob away and then semi retired. After a few months I asked my new surgeon about removing the non cancer boob to which she said absolutely not as there is nothing wrong, it is a perfectly good breast and they will just monitor it.
I was sinking into the chair and luckily asked her to go back through my notes to which the previous surgeon had recorded the conversation to remove the other breast. it honestly felt like she was paying for my op, and she knows about my other friend an lobular, but made me feel like I was paranoid.
so two surgeons, two ways of doing it, so now I have a square boob with nipple pointing to the floor in folds of skin and the cancer boob, super high and my skin is so thin you can kinda see the implant. So 3 months since my recon I look deformed.
so, im being super grateful I am here, and when the surgeon told me she wasn't confident moving my nipple etc, I didn't challenge it as covid and waiting times were delayed already, she told me it could be a year to see a plastic surgeon. (I seen her last week and she couldn't even tell me if its 6 months to 6 years wait). so I feel let down.
I was a hairdresser in my younger days and I can honestly say, I gave more aftercare info for my clients hair than I received form the hospital.
I am English so don't know the system and not one nurse informed me about Physio, nor booked me in after my surgery, exercise physiologist ... thrown into menopause on top...zero! just come back when your bag drops to 20 for 3 days, that's it!!! so luckily I researched and friends guided me to certain therapies.
I could go on all day, but I honestly found the aftercrare shocking.....
then this worry... im like... you let me walk out the hospital without showing me how to check myself, knowing my fear of no lumps with lobular and being high risk as was close to my chest wall. wow!
There is definitely a need for a written programme for each woman with a treatment plan to get healthier and fit again... mentally and physically... again lots of women may have received great service but I felt so left to fend on my own.
So that's my story, and thank you for the tips on scans as I've had all kinds of aches but put it down to my hormone therapy and menapause.
Have a lovely night and again thank you for taking the time to reply, means a lot xx
Take care..xx
