Share your views: Information and support needs of people following treatment of breast cancer
Hi everyone, Erana from BCNA here! I’d like to invite you to participate in a research study opportunity led by James Cook University. Please see details below. If you can't access the QR code you can also follow this link Qualtrics Survey | Qualtrics Experience Management. If you have any questions or concerns regarding this research, please contact the research lead Tracey Ahern at tracey.ahern@jcu.edu.au This study has been approved by the James Cook University Australia Human Research Ethics Committee (#H9326).
4 years since BC diagnosis & joining BCNA & my surgery ...
Woohoo! This year was the first year that I didn't actually 'remember' that Jan 5th was the anniversary of my actual diagnosis of BC ...... so that must be a good sign! So - today - it is now 4 years ago since I joined BCNA (at the suggestion of a girlfriend in Qld who had been diagnosed a few years earlier) .... and a few days later, Jan 15th, I had my surgery. What a roller coaster ride it has all been .... lots of tears, anger, melt downs, but there's also been lots of laughs and education - all emotions are a part of this shitty disease - but, newbies, take note - it DOES get better! During this time, I've really appreciated all the support & info & camaraderie from the group - but especially the wonderful friendships that I've made along the way - with regular PMs within 'The Famous Five' over the years .... xx. So ... a big THANK YOU to all of you who've helped make a difference All the best to those who've been recently diagnosed ...... reach out, lean on us, ask questions, and we'll do our best to offer support and info to help get you thru the rough bits xx take care, stay safe
Aromasin and weight gain, now I know Im not going mad...
Hey all, I had to share this as Ive thought I was going mad all these years, but now I know I'm not. I finished my treatment for my 2nd diagnosis in 2015 and was placed onto Arimidex, I was then changed to Aromasin. Post chemo I put on 6kg, this has blown out into 8kg now, to many they would say it wasn't much. However, in 3yrs I have tried EVERYTHING! exercise and diet, I would lose a little but it would reset itself back or more and now I know why. I am stuck on this for a further 2 yrs after discussions with my Oncologist, but Im upset that this is not discussed in depth with patients. I say this only from the point of full knowledge and understanding, not as to whether I would take it or not. This is purely for knowledge and knowing WHY I cannot get this weight off and so I can stop blaming myself and beating myself up. I will still continue to exercise and watch my diet, eventhough I know whilst on this medication not much will change, knowledge is just power isn't it? in a way Im relieved. Its hard to not get caught up in this post recovery of finding your new normal, but it doesnt help when we aren't told everything. There is light at the end of it I hope LOL Exemestane (AROMASIN) is a steroidal Aromatase Inhibitor (AI) Your extra weight may hang around and increase after chemotherapy if you also take hormonal therapy (tamoxifen or an aromatase inhibitor). If your body shifts into menopause because of chemotherapy, there's a tendency to gain weight. ... It's important to know that the hormone estrogen suppresses LPL activity on fat cells. The enzyme lipoprotein lipase (LPL)plays a major role in the metabolism and transport of lipids, and consequently is a participant in the development of obesity•One of its roles is to remove triglycerides from the blood for storage in both adipose tissue and muscle cells.••Enzyme activity may also explain why some people who lose weight regain it so easily. After weight loss and weight stabilization, adipose tissue LPL is increased and its response to meals is heightened.•People easily regain weight after having lost it because they are battling against enzymes that want to store fat. Fat storage is efficient, and fat oxidation is not•The activities of these and other proteins provide an explanation for the observation that some biological mechanism seems to set a person’s body weight or composition at a fixed point; the body will make adjustments to restore that set point if the person tries to change it. Hope this helps others understand why they can't shift that extra weight post treatment and know you too ARE NOT GOING MAD!!! Hugs everyone, am wishing 2 more years away as currently am 8yrs on combined medications and had enough! xx M
Lymph gland behind ear has lump
Hi there, I’m currently on 4th round AC, after my 3rd round, the lymph gland in my neck (Surgery side) behind ear swelled up and was painful, it has slowly gone down, but a hard lump has remained behind my ear. Got an appointment w GP on Friday, but wondering if anyone else had this as well.....
Anyone had to stop their chemo ?
Hi All 👋 Just wondering if anyone has travelled a similar road to me ? Had ILC Oestrogen/Prog + HER2-ve Grade 2, Stage 3. Infiltration into 2 sentinel lymph nodes. Axillary clearance with remaining nodes clear. Tumour 6.5 cm. Margins not totally clear after two surgeries (wide local excision followed by mastectomy and ALNC). Will have 5 weeks of Radiotherapy after chemo. Commenced AC chemo early Jan 2020. Became Neutropenic after 3rd cycle requiring admission to hospital. Responded to A/B therapy but then became extremely short of breath on mild exertion post discharge and generally unwell with intractable headaches. Head CT performed and was clear. Diagnosed with a UTI, pneumonitis, exacerbation of existing sinus tachycardia and a Troponin leak. Readmitted for 5 days under care of my Onco, a Cardiologist and a lung specialist. Had a Bronchoscopy with lung washes performed whilst in hospital. A/B's via Port. Echocardiogram appeared OK but all concerned re my Troponin leak. Discharged on sliding scale Prednisone for breathlessness. Began to improve once home but my Troponin level continued to rise. Had a rigor on the evening of 13th March (Friday the 13th !!) the evening before our daughter's wedding 😢Spiked a temp of 40.2 Readmitted to hospital. Blood cultures unable to determine source of infection. IV A/B's given with effect. I was not Neutropenic. Discharged after 3 nights and have been OK until now 🤞 Troponin stabilised. They felt the Doxorubicin was responsible for the elevation in Troponin. Am now on two Beta blockers for sinus tachycardia. I was unable to have the last round of the AC chemo, therefore only got 3 rounds in. My Cardiologist does not want to risk permanent damage to my heart with any more Doxyrubicin. Had to have 10 weeks in all off chemo after 3rd round of AC. Re started chemo (Paclitaxel) last Tues and have my second session tomorrow (12 weekly cycles in all). So far so good 🤞 My worry is the extended break between my two chemo cycles. How will this affect my overall prognosis 🤔 Can't seem to get a straight answer apart from "these things happen" "can't be helped" I know this, but these comments are not an answer to my question 🙄 And also....how does not being able to have all 4 cycles of the AC impact on my prognosis 🤔 Would appreciate any feedback from anyone who has experienced similar. Much appreciated xx
Take a seat, Lois.
THANK YOU for all the absolutely beautiful messages of support and encouragement that you all sent to me regarding my post "tears in the dark". I know it was a pretty profound bit of writing that may have stirred up some memories or given some, the shivers and shakes of what is to come. One thing, I have discovered from being a prolific reader is - sometimes, you just need to close the page and let the unknown be exactly that - the unknown. I had been amassing information in preparation for probabilities, outcomes, goals to achieve, resilience measures and trying to prepare myself armed with a million different weapons mentally - when in fact, I should of just stood quietly and actually let myself "feel". That was something I had not allowed myself to do since the diagnosis in February. I had just stopped 'feeling'. I didnt want to feel the utter terror, the fear of losing what I had around me, within me and the potential of the future. I realised the wall I had built around me was a protection against the continuous onslaught of what if's, maybes, could be's, never going to happens and the inevitable - will I ever breath slowly again? I had been warned repeatedly that my 'matter of fact' behaviour was disconcerting to the nurses and doctors and I know they were waiting for the meltdown that would inevitably come. Which of course it did. Thank Goodness!!!! it was a bloody relief and yes, I can now slowly breathe slowly again. This week, I woke with a new found sense of confidence. Wonder Woman was still having a nice holiday on a tropical Island but Lois, ME, had been walked freely from my self imposed cage and I walked confidently into the Inner Sanctum with a sense of purpose, happiness and each day, each week that will come means one step closer to whatever will unfold and I do not need to be full of fear but merely acceptance that there may be hiccups, milestones to tick off and of course that time when life will not be full of endless maybe's, could be, hope-not's and the rest of the shit we all tolerate. I can report this week, no reactions occurred and I finished my 2nd treatment with a smile, a happiness of my soul and dare I say - relief that for once I have NOT opened up any books, websites or research to arm myself once again. It is merely what will be will be. I took the same seat like last week, placed my arm out for the needle and contently sat back and spent my time chatting, eating the delicious lunch supplied and thinking quietly that all of us within that room, had inevitably become historians of our own destiny and we were all free to guide it to the best of our abilities - one day at a time. To those who have championed themselves through the days, weeks, months and years - I am in pure awe of you. Truly, in awe. YOU INSPIRE ME. My admiration for your resilience and encouragement that one day the endless hospital appointments, surgeries, specialists will soon fade to merely living life as it comes - living life to its fullest, is an incentive to breathe slowly, relax and acknowledge this is just a bump not a endless road to nowhere. To those who have like me, just begun the bumpy road - WE WILL ENDURE. WE WILL FIGHT. WE WILL BREATHE!!! As to what song has been playing through my head - Pearl Jam "Alive". Why - because I am still Alive!!!!!! That is the feeling, I had locked away, way back in February! I AM STILL ALIVE - I am NOT a walking death sentence! Oh, I, oh, I'm still alive Hey, I, oh, I'm still alive Hey, I, oh, I'm still alive, hey, oh. Big Hugs, Lois.Who’s heard of Kinetic Physiology to control pain?
I think we can all relate to ‘Gary’s’ story .... our pain levels are not necessarily 'believed' or we are just told to 'put up with it.' https://kineticmedicine.com.au/kinetic-medicine-blog/2020/2/1/garys-story I have not tried this - but if you have - let us know how you went? (I am currently not in that much pain, due to my oils that take the edge off it!)
Should I be worrying about potential restrictions to medication access?
This thought pecked at me a little last night (because it had only just occurred to me) and then they spoke about it on the news this evening...Will restricted imports impact my access to life-saving drugs? Should I be stockpiling? That sounds so wrong, but I'm a little nervous as I have mets and this drug regime has been so perfect for me...Where can we get advice about this? I cannot even find where my drugs are manufactured. I realise I am catastrophising, which is very unlike me..
Ovaries removed
I was diagnosed with lobular breast cancer in June 2019. ER+ I’ve finished chemo, had surgery & about to start rads next week & then have to take tamoxifen after I’ve finished rads. I’ve read on forums that some ladies also have their ovaries removed if they have ER+ breast cancer. Is this because they have the BRCA gene? My surgeon has not mentioned anything to me about having my ovaries removed & I’m wondering if I should.
