Newbie
Hi there everyone š this is my first time posting my journey so far, it has taken me awhile to do this, so apologize in advance for such a long post. First I must say how wonderful it has been reading people's posts and how lovely and caring you all are š such an inspiration I was diagnosed 10/2/20 with ILC stage 2 grade 2 hormone + her2- 11mm right breast. Appointment with Breast Surgeon the next evening he suggested lumpectomy but going for a MRI 20/2/20. Results back 27/2/20 that uncovered a few small lesions so more biopsies they came back cancerous 4/3/20. So now have chosen to have a skin & nipple sparing mastectomy with tissue expander & sentinel node biopsy. Boy how things change. BS is hoping for clear margins and clear under nipple and clear nodes then no need for chemo or rads just 5 year hormones. Op booked for 9/3/20 Private Hospital. Awoke to so much pain in top of breast where the tissue expander seemed to be up to high (under my muscle). Heaps of pain killers, even the self administrating pump thingy, eventually taken to my private room (that was nice). Had one drain in, IV, oxygen, then the usual obs, pain killers & antibiotics through out the night & day. 10/3/20 still very painful like nothing was really working. Nurse took me off the IV, oxygen & self administration thingy and gave me 2 endos but even they didn't help the pressure feeling. Feeling pretty bummed. Pathology results should be back by Fri week. 12/3/20 saw physio start level 1 exercises and walking the corridors. 6/3/20 Yay going home today after 1 week. Results in 20/3/20 good margins, main tumor was actually 16mm, 3 smaller lesions, unfortunately 1 out of 4 sentinel nodes had a 4mm cancer, bugger now I'm told it's going to be chemo, rads & hormones. Being referred to the Alan Walker Centre. 31/3/20 appointments with chemo oncologist & radiologist, off for blood tests and an echo test on heart before I start chemo. 8/4/20 1st chemo cycle booked. Treatment plan is 4 cycles of AC dose dense every fortnightly then 4 cycles of Paclitaxel dose dense every fortnight, then radiotherapy 5 days a week for 5 weeks. Then hormones for 5 years. 7/4/20 Appointment with BS put 100ml in TE. 8/4/20 chemo went well, went home with a bag of medication, was waiting to feel sick or nausea but I didn't. Cycle 2 booked for 22/4/20 went well again. 28/4/20 unfortunately I had an accident this afternoon cut my shin open on some tin, rushed to emergncy ended up with a 8cm long cut and 9 stitches and had a tetnus shot. Discharged at 10.30pm with having 1 antibiotic & a script for more. 30/4/20 leg was painful getting red and had a fever 38.7 so back to emergency and was admitted straight on to IV antibiotics and lots of tests, transferred me to RDH more tests. 2/5/20 Chemo oncologist came and saw me said chemo cycle 3 booked for 6/5/20 is cancelled. 5/5/20 discharged. 7/5/20 community nurse house visit to change dressing, leg still throbbing when unelevating. 8/5/20 Appointment with BS put 75ml in TE only 75ml to go then no more GREAT! as it is such an uncomfortable process and feels like a rock. 9/5/20 concerned about leg still sore. 11/5/20 nurse came to change dressing said wound was looking ok but warmth & redness not good so went my gp and changed my antibiotics, contacted my BC nurse & she filled in my chemo oncologist he said go for your usual pre blood test & come into tomorrow for chemo depending on wound. 12/5/20 well he took one look and sent me straight to emergency RDH after they took a wound swab (to find out which bacteria bug to treat for which takes 3 days to grow). So once again admitted put on IV antibiotics, wound cleaned and packed, more tests. This is really turning into a nightmareš£. 14/4/20 finally got the swab results, so on the right antibiotic now YAY YAY. 15/4/20 one of the treating Dr's came and said the xray of your leg showed a shadow on your bone which could be that the infection could have spread to it, so off for a CT scan (just what I don't need) thankfully results came be negative šš.Got discharged 4pm with take home antibiotics.16/5/20 the best sleep for the year marvelous I've been so exhausted. Nurses coming daily, finally everyday seeing improvement. So chemo cycle 3 booked for 26/5/20 depending on wound. Usual blood tests day before. YAY they decided to go ahead finally can get back on track. Feeling so much better now. 29/5/20 nurse coming out this morning. Appointment this afternoon with BS only going to go for half the fill to my TE. Chemo cycle 4 last AC booked 9/6/20. Once again sorry for the long story but thought it best to put it all out there. xxā¤ā¤xx
Anyone experiencing Nerve Pain post surgery/radio
Hello everyone, First time poster. Diagnosed in Feb 20 early stage cancer. Feel so fortunate discovered early and good prognosis. Described as a ātinyā cancer by breast surgeon (.5 mm, e+ p+ herc-) Just so relieved and grateful to be settling down after the rollercoaster that starts at diagnosis. But a hiccup has occurred post radio (no chemo). Now three weeks since finishing radio and 9 weeks since surgery. Skin recovery excellent. I am now experiencing what I can only describe as a stinging ache in breast especially around nipple. Sort of burning feeling but different from the radio burn feeling. Pin prick type pain, especially from nipple to underarm, but really whole breast aches and feels tight and āstingyā. No pain at night in fact lying flat at night no pain. Starts when I move around and by late avo intense. I did have a reduction both breasts at same time of lumpectomy as I am a small person with large breasts. Reconstruction was done at same time as well. Sentinel node work (all clear) also. So considerable surgery. Please tell me others have had this feeling post radio and it is not permanent nerve pain. Post surgery I did have severe nerve pain in both breasts but it settled before radio started. Is it still early days? Goodness could this be permanent? I have excellent arm movement. Reassurance or like experience greatly accepted.
Why Reconstruct?
In the early days that followed my mastectomy I would inadvertently shock myself most mornings with the pre-shower glimpse. The scarred, concave and asymmetrical part of my chest was where my small but significant right breast used to be. āIāll just get a reconstructionā was my little soothing throw away line to self that always followed the breathtaking disbelief. I donāt think I ever thought through or really knew what that actually entailed, or why a reconstruction was actually important apart from the obvious. It was never an issue of weight redistribution to prevent back pain. I have never had large enough breasts for that to be a factor in my choice. I donāt think it was to mend any major bereavement for having lost something dear to me either. Right before I lost one of them, my breasts were simply my breasts. I wasnāt always this au fait with them if Iām honest with myself. You could say the trajectory of my relationship with them over the years has been rather fickle I guess. In the teenaged years I wished for them to feature more prominently and spectacularly (come to think of it, this wish largely outlived the teenaged years and continued well into my early 20ās). The obsession for larger breasts became less of an issue as I became older, and by the time Iād met my life partner in my late 20ās, I learnt to appreciate them almost as much as he did, needing them less to be what they werenāt and coming to accept them more for what they were. They were just a part of me most days and at other times they were quintessentially sexual and irresistible weapons at the height of passion. What a gift! By my early 30ās after the birth of my first child theyād morphed into pretty amazing life giving nourishers to my baby. They were literally heaving compared to how I knew them, and while this should have brought me the joy Iād forever longed for, they instead brought stinging needle like pain whenever my baby latched on. Engorged, sore and seemingly not my own (but my babyās and the wider general publicās) was how they had evolved. I was never one of those earth mothers who felt the all consuming maternal ecstacy some others felt during the nursing moments. Although I marvelled at the thought of such an amazing biological function, I also longed for my body back for myself, to wear normal clothes again, to reclaim my breasts as my own. Subsequently I went on to have two other children whom I also breastfed. Mastitis featured twice, and by my third child I was hooking myself up to an electronic milking machine and expressing my own milk to increase supply. Not my idea of glamorous. I stopped breastfeeding my third child in response to my diagnosis of ductal carcinoma. It was then that my right breast took on a whole other persona, one Iād never really imagined ā diseased, potentially with the capacity to kill me. I had very little time to contemplate the mastectomy which, in hindsight, Iām grateful for. When my surgeon told me my breast couldnāt be saved, I swiftly went into āwhere do I signā mode and couldnāt see any reason to mess about. It was a no-brainer in my view. I wanted that sucker gone and I just felt relieved that this was my potential get out of jail free card. I had three kids to think about. I was grateful for a plan and I took it. I could have an MRI on my left breast in six months and if given the all-clear I could opt for a reconstruction of my right breast. Sorted. It took a few days for me to look at my scar. I was imagining something horrific. When I looked at it through one apprehensive eye for the first time in the hospital shower I was surprised. It was neat, clean and tolerable. It was ok comparatively to what I was expecting. I could never imagine showing it to my partner however. I wanted him to have the old image of the complete me in his mind. I didnāt want this to be the new frightening one. I didnāt want this to marr his vision of me in his mind from this moment onwards. What if this would turn him off being intimate with me? Afterall, now half my body looked androgynous. Worse. I had no nipple, just a horizonal scar. Iām not sure I mentioned that my partner is world class, by the way. If there were Olympic games for partnerās of women with breast cancer heād be hogging the podium, hand on beautiful heart, clutching the gold. Heās an absolute keeper. My best friend and touchstone. He suggested to me shortly after my mastectomy that I might surprise myself and decide never to have a reconstruction, and that would be ok too. I thought he was a bit mad, I knew Iād want a reconstruction, as loving and genuinely accepting as this comment was. As the weeks passed I parked all thoughts of the next step. I just needed to heal, come to terms with my very brief encounter with breast cancer and catch up psychologically to what Iād just experienced. I did not require any further treatment, my cancer was contained, I was incredibly lucky. One of the main effects of losing a breast for me was the loss of body confidence. I really looked no different to others when wearing a prosthesis however I realised that my complete womanhood did have a great impact on how I carried myself as a person and ultimately how I perceived myself professionally and personally, even if this was largely subconscious. Shortly after realising this, I joined the BCNA online network and thought Iād peruse the reconstruction section. I found it totally overwhelming. I really had no idea about what reconstructions entailed and I didnāt know where to start researching. It all seemed too much to bear, it was the last thing I wanted to embark on. The idea of heading back down the surgery route seemed way to close to home, completely daunting and not straight forward no matter what your circumstance. I understood why women didnāt have reconstructions for years after the loss of a breast. It felt like Iād exposed myself to this next step way too soon. I simply wasnāt ready. Iām still not ready, its only been 2 months since my diagnosis. I wear a temporary prosthesis and for the moment, it gets me through the day. I can be happy and focus on other things. I can view my scar in the morning with less of the shock and more of the pride that comes with having a battle scar. It feels more hard core than anything else really. Iām starting to get why people never reconstruct. I never thought I would. It leaves me with one last problem however. My sex life. Itās changed. My partner has not changed. He remains crazy about me and his sexual drive appears unscathed by this experience. Iām lucky. Suffice to say that I still have not shown him my scar. My partner lovingly tells me that he will see the scar when Iām ready to show him. I would like to enjoy sex fully naked and unemcumbered by self consciousness as I have been before now. I just canāt. Although itās early days I find this really difficult to overcome. I now realise how important sex, free of hang-ups, was to me and I really miss it. I wonder if this is the clincher for me to decide that a reconstruction definitely needs to take place. I never thought my sex life would feature as that important in deciding upon this. I guess time will tell. For now I will just beā¦..
Expander Update
Hi All Thought I would provide an update. Bilateral mastectomy happened June 6 so it is now 2 1/2 weeks later. Had expanders put in and 100ml in each during op. Had 4 drains. Stayed in hospital for 8 days. (One drain leaked a lot at home for first 24hrs which was a bit gross. Surgeon said the nurse should have put a steri-strip on the drain wound before I left). Recovery going ok. No infections. Off medication now although taking the occasional sleeping pill. Quite difficult to get comfortable. Most pain is under arms. Going back to plastic surgeon Fri. He will do the first "fill". Have told him I don't want him to do too much each time. He said he usual does about 60ml. I will have about 6 fills and he said he will recommend I go to about 450ml which was apparently what my breast tissue was when they removed it. Will have silicon implants put in about 6 weeks after final fill. Hope everyone is going along well with their many and varied reconstructions. I am amazed out how many different ways there are of doing this. I guess we will all get there in the end and have a couple of bumps under our shirts again which is the basic aim. Always interested to hear stories of those who have tread this path before me and are at the end of the reconstruction process. Really appreciate those wonderful women organised and brave enough to post photo stories as well (not me, sorry). Sonya
One week to go
So this time next week I will be oblivious to the world, completely out of it having my double tram/Diep reconstruction. To say I'm nervous is an understatement, but also very excited too.. Thank you to all the ladies who have put forward some sensational advice on what to expect, what to take to hospital, recovery tips etc.. Will keep everyone posted as to how it's gone.. Love to all Kat xx
RECONSTRUCTION
Well, im not new to this page but am now floundering in the reco' stages and really not sure of pros n cons. Ive been to see 2 plastic surgeons and as you can see by my Tag, these are the options for me. I do not want the TramFlap. I am just wondering if there is anyone out there who has had the External Oblique successfully on this site and who would be willing to help out with info etc,, The lady offering the Ext Ob, had no photos to show me which put me off strait away but then the lady offering the Diet, did and I wished Id never asked, , the scarring was terrible and I would never have lived with it,, They both put up their reasons and one i will be out of pocket around $6000, but I dont care, its worth it to me and the other is the minimum 2yrs waiting list public. Just curious on others experiences,, and I might add, what a hassle to get on a waiting list, I have been trying to get on at least ONE since May 2011 and am still waiting,, now thats just to get on the waiting list,, what happens when you actually get on it?? My BCN said to me that secretly she didnt think her ladies were moving up the list,, hmmm,, any help, advive, dos/donts all welcome,, Thanks, Mechell and thanks for the Beacon, great read ,, hugs and love to all you beautiful ladies xxxxxxooooo
Dates been set!
Ok so after 4 weeks of being diagnosed a date for surgery has been set. 27th November is D day. I have decided to do a bilateral mastectomy with saline implant reconstruction. Very happy with my plastic surgeon, he made me feel like I was just going in for cosmetic surgery rather than a mastectomy with reconstruction. I am nervous now that the dates has been set, as it is all becoming very real. I will be glad when it is all over and I can get on with LIFE. I cannot be greatful enough that we found this so early and I have such an easy outcome. Its funny how life works, if my mum and my sister wernt diagnosed with breast cancer in the last 12months I would never have gone for the mammogram and today I would be walking around unaware that I had breat cancer, the outcome would have been a lot worse 6 years down the track, if I waited till I was 50. I have encouraged all my over 40 friends to go get a mammogram, its 10 minutes that could save your life. It did mine!!
getting cannula into veins
Hi, I went today to get a CT angiogram done priior to having reconstruction in a few months, referred by plastic surgeon. It was very distressing as they could not get the cannula into the vein to inject the dye, so I ended up in tears and left saying i would come back another time(nexc Fri). They said this is due to the veins being wrecked by chemo (FEC,Docetaxel). On the other arm I have been told not to have veins pricked due to lymph nodes being removed, so god knows what I am supposed to do. Chemo finished 13 months ago now. Has anyone had this and got around it? hanks, Julia