Leanne

Hi, your planned surgery is similar to mine ( see details on bio page).  I have no idea why they're recommending full ANC at the stage you're at as my nodes were discovered to be cancerous following biopsy that accompanied mastectomy.

Anyway with the benefit of hindsight on my part I would have been grateful to have known they needed removing early doors as that would avoided 2 ops - one for mx and one for ANC.

The ANC is worse than the mx as its more intrusive in sensitive areas and the main challenges I found were discomfort around the armpit area as well as a longer recovery time for the ANC compared to the mx (I'm impatient and like exercising). The chest was no problem in comparison to the armpit area but due to the nerves being cut the arm has been uncomfortable and annoying...not painful really though cording did make doing the post surgery exercises that you'll be given quite painful at times.  But I do have quite a high pain threshold.

You may well get a seroma which you may be aware of as these often decide to join the party and cause just a little more annoyance when you least need it ( I got mine following both surgeries and its still refusing to socially distance from below my armpit).  This also caused extra discomfort.

One thing I would definitely recommend, as I'm still no clearer as to why this happened with me and worth your being aware, is what else they'll do or may do (sometimes they may not know until they're actually removing them) whilst removing the nodes, as I said I had the nerve cut which means the armpit and top of arm and some of chest is numb and uncomfortable - its getting better very slowly but may never get back to how it was.  I wasn't aware this could happen, it doesn't happen in all cases and wished I'd known about the possibility beforehand and also why it was needed to be done so I could challenge or at least understand.

Hope that helps.  Any other queries let me know.

Sam

Hi

Im sorry to hear.

Ive just had a mastectomy and 3 lymph nodes removed 2 weeks ago and just had my results.  Ive now been advied I need to go for a CT scan and been given a date for ANC in 4 weeks time.  Did you have a scan to check if its spread further than lymph nodes?

I cant tell you (but Im sure you understand) how worried I am.  Do they think it has aleady spread further.  I was completely shocked as on my biopsy, ultrasound and MRI it hadnt spread. 

Hi Leanne,

My hospital did not do a CT scan as a matter of course, and if the boyfriend ( I wasn't as bothered as he was) hadn't insisted on one it wouldn't have happened.  Despite the cancer in the lymph nodes rupturing ( so it was making its way elsewhere) the scan showed all was fine.

Be glad they're giving you the scan as it will, as it did with my boyfriend, put your mind at rest that the cancer has not spread beyond the lymph nodes.  I don't quite understand why MRIs don't pick up these things ( I had several during chemo and they didn't pick up the spread to lymph nodes) but the scan is a precautionary measure, your support team won't be assuming anything at this stage just checking.

Best of luck

Sam

Hi

I know its easy to say but try to stay positive.

I've recently gone through all the worry and sleepless nights feeling anxious throughout the wait for my CT scan results but all was good and it was reassuring to know. 

I am now 5 weeks post mastectomy and had my results from my biopsy to find all 5 lymph nodes showed positive.  I had a large lobular tumour but like yourself, all scans showed normal nodes and had been reassured it hadnt spread so it totally knocked me when I was given the results. 

Im due for ANC in 1 week and pray this gets rid of the cancer.

Its such a waiting game but I hope all goes well for you. xx

Good luck to you all. My wife had breast cancer. DCIS but high grade. I'm not a medic but noticed that the medics did not volunteer much info on the risks of lymphoedema, following any removal of lymph nodes, and what can be done to reduce this to a minimum. Macmillan have a good guide to this. 

www.macmillan.org.uk/.../reducing-your-risk-of-lymphoedema