Hi,
Thought I’d jump in and start the ball rolling!
Good to see some names I know here ( and from elsewhere). :smileywink:
Nice to see BCC expanding their services for SBC. Having a private place has always been an important issue for us with SBC so hopefully this will prove to be a good support for those of us unfortunate enough to qualify for membership, specially those without FB who don’t have access to other private support groups.
Anyway, enough of my garble - lets get talking! xx
Hi JulieD yes lets hope this forum takes off for us SBC peops
Suze x
Hi everyone,
I’m very new to the BCC forum (or any forum really) so not entirely sure what all the buttons and options etc are for yet. Please excuse me if I do anything silly. Hope this part of the forum is a success. x
Hi all, good to have somewhere to share our thoughts and lives. I’m 5 years down the road since bring dx with both primary and secondaries thriving and surviving on a combo of herceptin and hormonals. Xxxxxx
Hello All,
Not sure if there’s anything we can’t discuss or the sort of photos we can post on here. I don’t want to overstep the mark, but it would be useful to know if members can post snaps of rashes, ulcers, wounds etc. I know that it’s not pleasant but it’s sometimes useful to get a visual comparison.
Any thoughts?
Thanks,
Julia x
Hello everyone,
It is great to see all the lovely support that is already happening on this group.
You can create a separate thread where you can share images and talk about your shared experiences of rashes, scars etc, on this private group.
The moderation team are looking into why you cannot see the rest of the members and it should be fixed soon.
Best wishes,
Lizzy
Digital Community Assistant
Hi everyone
I was dx 1996 then sbc dx 2013 I had ductal breast cancer grade 2 bordering on 3 in 96 then a secondary on the chest wall with a second tumour in the breast and on the sacrum (spine) and then after a bone scan in November I found out I had 5 more mets in ribs,left femur,left tibia left pelvis and right femur. Forgot to mention skin mets that appeared in 2014 on the chest wall tumour which spread 2015 to my clevage and other breast and abdomen although the latter seem to be calming a little. As some of you know I have been through a nasty time with 2 large ulcers on my skin mets which have now healed thankfully and now look much better since being on capecitabine. Well that’s me still plodding on hopefully for a long time yet.
Love Rosemary xxx
Hello all from me too
Short version of my situation - My primary was diagnosed Sept 2011 and is triple negative. Despite two lots of surgery, chemo and radiotherapy I was told I was at high risk of a recurrence, which was diagnosed in April 2014 on my chest wall but surgeon couldn’t get clear margins despite chest wall scraping twice. Then spread to skin and subpectoral region diagnosed Sept 2014. Very lucky to reach NED April 2015 after Gem-Carbo chemo but back in skin and further node spread in June 2015. My cancer isn’t classed as secondaries, just called a loco-regional recurrence, but it’s as incurable as secondaries. Disappointed to have an intolerance to Capecitabine but Eribulin is currently keeping my skin under control (quite good reduction in that recently) but I’m having a CT scan next week to find out how the rest is doing - have had my typical cancer growing pains recently so not sure if it’s working as well on the inside as it is on the outside.
Here’s hoping 2016 is a good year for us all.
X
Hi I have triple negative sbc in bones, pleura (fluid around lung) and liver. I am currently on Eribulin chemo and Denosumab injections. Primary dx 2007, mets from 2012 onwards. If I can be of any support please send me a message. Love & best wishes xx
Anybody heard from Mitch23 recently? I know that she was having a bad time with liver mets. Hope she is ok and sends some news soon.
Julia x
Hello everone. Iam new to this group and have only been a member of breast cancer care a few months. I was initially diagnised in 2001 and had a mastectomy followed by five years on Tamoxifen. I continued with routine mammograms and went to the breast clinic twice with concerns which were brushed aside by the consultant. In May last year I saw my GP regarding a deterioration in my breathing and folliwing a chest xray and CT scan was diagnosed with SBC. I have recently completed 6 sessions of Docataxol and Herceptin. I am due to get the results of my CT scan next wednesday and find out out what further treatment will be.
I have me bone, lung and skin mets. Could they have been picked up earlier if my concerns had been properly investigated? Who knows but if they had I would not have had the life style I have enjoyed.
I refuse to be negative about my situation and will remain positive whatever the future holds. Family and friends think I am brave but in my opinion this is the hand I have been dealt and I will live my life to the full.
Hugs to all you ladies
Hi all, I was on the forums quite a lot 2010 to 2013ish and then just gradually drifted on with life as you do. I had a grade 3 tumour on my right breast and had adjuvant chemo followed by two WLE then rads followed by Herceptin with five years on Arimidex. Back in Oct 2015 I got up with the most awful pain in my shoulder I couldn’t even reach for a cup of tea then the pain sort of went towards my neck so I saw our on call GP to be told it was a torn Trapezia he said get hubby to massage it and use heat pads, it was a replief so I did as asked and the pain just got worse by this time it was down my chest our poor dogs couldn’t understand why they couldn’t jump up to sit on my lap (westie and westie/Yorkie rescue) so off I went once again by then it was getting to the end of November and no better I had to beg for pain relief as I couldn’t have anti inflammatories so with great reluctance I was prescribed Tramodal which made me sick so I didn’t take them. The pain didn’t stop and I started with a lump at the top of my sternum which made the GP take notice with swelling on my collarbone was now very sore so he took bloods on 23rd Dec so everything was put on hold due to Xmas. I had my very last appointment booked for the 20th Jan so we decided to stick with that, my go away and enjoy the rest of your life app ? Sadly I was sent for CT scan which showed my right lung,neck and another lump under the swelling which can’t be biopsied due to being close to major veins but my oncologist explained I need a head to foot scan to check the bones so that’s happening this Wed . I am so shell shocked and am angry that my telling the doc almost two years ago that I got breathless which was brushed off and I felt like a complainer! I so wish I had kicked and screamed about it then, I asked onc if it would have made any difference he didn’t seem to think so but I guess we will never know. Starting chemo probably next week it’s going to be Herceptin,doxcetal and Prejeta of which I have for 6 months then Herceptin/Prejeta for life. So sorry to rabbit like this but I still can’t get my head round it all. Not a gang I wanted to join but I am here so thank you for reading my tome and hello to you all, I hope to get to know you xx
Hi Emmy hope you are feeling a bit better for getting that off your chesr. It is so frustrating but as you say we will never know. I feel lucky my GP did listen when I was breathless even though I wouldnt have chosen SBC as the outcome. I had 6 sessions of Docetaxal and am having Herceptin injections. I have also just started hormone therapy. One good thing is my chemo fimished in time for me to come on.a planned holliday to Thailand. So I am currently laid in the sunshine writing this post. Sending you my vest wishes. Stay strong and positive.
Thanks Julie for your response. Fortunately I am a very positive person and will tackle things head on. Its good to hear how well you are doing as it is uncertainty that holds me back from making decisions regarding long term plans. My husband and I are both retired and holidays were the top of our agenda. I was reluctant to book any more in advance but am already thinking I will contact the insurance company on my return from this holiday and check that I would still be covered if we had to cancel. Thanks again
Thank you for your kind reply, I am slowly getting my ducks in a row! First go round I focussed on the next treatment, test and tried not too think too far ahead. I am an upbeat sort of person as a rule though I couldn’t believe how calmly I questioned the onc, I just didn’t want that feeling of being slammed through the system and feeling empty. This time I am more than capable of checking things over and feeling a part of my own treatment. I was so scared that I would walk out and not remember a word!! Hubby was just as bad so I am taking the bull by the horns. I used to work with adults with learning difficulties to a mantra of not about me without me that’s how I feel. Dreading the blasted chemo I was so tired only thing is hubby is now retired so we can support each other. Glad to have ladies who understand and have been reassuring that there is still life to be had thank you again Emmy xx
Hello. I have just been accepted to this “elite group”. I have been active on the other boards but thought I would introduce myself properly.
I had my original BC in 2004 and went through the usual treatments - lumpectomy, rads and chemo and five years on Tamox/ Arimidex. I was then discharged after 5 years from hospital life and virtually forgot about bc and got on with my life.
When I hit the ten year landmark - I decided to retire and move house and "enjoy " some time away from the 9 to 5 routine of office life. About a year ago I started getting hip pain and carried on swimming etc . I saw Doc and he thought it was a trapped nerve and game me some painkillers. I then went to a Chropractioner who treated me for a month for a trapped nerve which made things worse. I finally (my fault shouldnt have left things so long) went back to Docs who arranged for a x ray. Well I couldnt have been more shocked to hear that I had sec bone mets to hips, pelvis, spine and a hole in the femur which was quite weak. I had an emergency op in November to put a nail in the femur to strengthen it and try to stop it snapping. I have been on Letrozole, Adcal and Denosunmab since and hope that this will be sufficient to control things for a while. I have had a bone scan and ct scan but I dont know whether I have mets anywhere else and to be honest I think ignorance is bliss sometimes.
Well thats basically my story and I shall read this forum with interest and also it saves me a fortune on online shopping which I was doing too much of before !!
Hi pussy. just back reading your post on January 21st and I have just have had my 2nd denosumab injection and phew I ache and the pain has increased. Does it get better as you are ahead on the injections ? The ache seem to kick in on day 4 /5. I was fine After the 1st one too. They say its very easyto tolerate but I could do without the aches in places I have never had before!!
Hugs xxx
Hi Carolyn, I have my 12 Denosumab tomorrow, and not going too bad on it. Went through a few cycles where I was wiped out on day 4/5 but that’s not happening now. Right elbow pains, but that may not be related. My bone lets on CT have been v positive since I’ve been on it, take care x
Hi Carolyn
How are you doing after your 2nd Denosumab?
Xxx
Yes after 2nd denusumab felt really achy for five days but better now. So want to be able to tolerate them as my poor bones need all the help they can get!
Hugs xxx