Early stage lymphoedema
Hi everyone. So I’ve just come back from one of my lymphoedema clinic appointments and they said my sozo measures and arm measurements were a bit high. I’ve been given some extra exercises and self lymph draining massage instructions to do but I was just wondering for anyone who has had reversed it fro this stage had any extra tips that I can do to maximise my chances of turning this around ive got another appointment in 5 weeks and if it hasn’t changed they want to look at compression which I’m keen to avoid with the weather warming up I’m a busy mum of three and work from home on our own business too so there’s no time for gyms or yoga or anything like that, just looking for extra things I can incorporate into my already packed days. Appreciate any tips and tricks that you may have just for background I’ve had left side mastectomy, full auxiliary clearance, 3 weeks radiation and 16 rounds of chemotherapy all completed. Still doing immunotherapy and taking anastrozole Thanks and have a great day 🙂
Just diagnosed with Invasive Mucinous Carcinoma
I was diagnosed yesterday with invasive mucinous carcinoma. I'm booked in for a lumpectomy and removal of sentinel lymph nodes on the 20th February and the regular CT scans and bone scan on 1st Feb. Surgeon has said that due to my age (45) oncologist may likely recommend chemo, radiation or hormone therapy depending on receptors found. I honestly feel like I just enrolled in a new unit at uni with all this new knowledge that I am researching and learning. I haven't found many forums that talk about this type of cancer, less common. Would love to hear from others with same diagnosis. So many thoughts to navigate. I toggle between doing ok and coping and then next minute I'm a mess. I'm sure this is normal. I have such dreaded thoughts about my future and ideas of planning a will and leaving all the passwords for my kids but then I collect myself and try to be positive and strong. I find myself just staring vacantly while my thoughts are racing and my family don't really know what to say, honestly neither do I sometimes and so I say nothing. Looking forward to connecting here and leaning on the support of amazing strong women and getting a well needed laugh occaissionally xx.Sore Joints
Hi I was diagnosed in August 2017 at 54 after having pain in my left breast occurring between mammograms. My TNBC tumour was stage 1 grade 3 1.7cm and removed, and then had a reexicision to clear margins. 3 lymph nodes were also removed and clear. I began my first of 4 ac chemos and was really unwell with stomach issues-gastritis. A week later I lost my balance and fell dislocating and fracturing my shoulder also hitting my head passing out. Ambulance to hospital neck brace precaution, shoulder relocation, c.t., xray and MRI. Discharged after 3 nights. Oncologist delayed chemo for 6 weeks until I recovered and then swapped me to Taxol weekly for 12 weeks and then finished with 3 AC chemos last one in April. 5 weeks of radiotherapy followed finishing June. I have taken a few months to recover. My joints are really sore especially after sitting in one position for 15mins or more. The joint pain moves around to different joints so I am wondering whether chemo has brought on arthritis. I have started a gym program and walk most days to keep my joints moving. Has anyone else been affected with joint issues following chemo? Also I am not having PET scans at all as the oncologist says there is no advantage when you are TNBC so he discharged me from his care as soon as chemo finished. I am just under the the care of my breast surgeon. The oncologist says only 1% chance of cancer returning to breast. Apparently I will know if cancer has returned anywhere else because I will be in alot of pain and it will be aggressive so chemo will not have any affect next time. Has anyone else been told this?
Research Trials
I am new to the community - Hi. I have a question for people who are undergoing dose dense AC and Taxol for triple Negative breast cancer, in relation to how much exercise or movement they are doing. Background: I was diagnosed in May and have a treatment plan that is slightly altered - I have chemo, then surgery and then radiation. I have a triple neg invasive carcinoma ( it was 1 cm at diagnosis now 6 mm and shrinking (shrink MOFO SHRINK)) and a 3 cm area of DCIS in one boob. I was invited to take part in an exercise research trial. I am pre menopausal and I was already moderately fit + active. This trial has required me to walk 8 k steps per day and do weights 3 x a week during chemo. I am enjoying the golden elixir (chemo) of dose dense AC + Taxol for 20 weeks. Halfway there at 10 weeks done. The research trial is looking to establish if i can maintain muscle mass, invoke the sympathetic nervous system, impact of my bone density and what impact exercise has on treatment and side effects of Chemo. I was required to lift weights and do a heavy workout post chemo (AC). QUESTION/Discussion: I was wondering how other people on the same chemo treatment are doing in terms of moving and exercising ? Are other people able to maintain prior exercise regimes ? Have you made it part of your habit. If there was a trainer or an exercise professional would you be interested in working out post chemo (directly after infusion). I can’t swim anymore as I am an ocean swimmer and with a chest infection and neutropenia and low haemoglobin advice from the doctor was hell no. So i am left with pilates, weights and walking.
Diagnosed on 1 May 2017
I am 58 and have a lifetime habit of healthy living. Therefore,when I was first diagnosed with breast cancer in 2014, like everyone else I'm sure, I couldn't believe it. It never occurred to me I would get cancer. After I competed treatment I did everything I could think of to ensure I would be healthy and cancer free. Early this year I started to experience inexplicable back pain. I also didn't feel myself - hard to explain. After many visits to the doctor trying to figure out what was wrong, I ended up in Emergency at 4am with unbearable pain. I was diagnosed later that morning with metastatic breast cancer - Monday 1 May. Within a week I was receiving chemo and had my first radiotherapy treatment. I am blessed to have a highly skilled, caring and compassionate medical team that I have complete faith in. The resources on this site have been informative & helped me a lot, especially during the first few terrible weeks after I was diagnosed - I'm sure I took advantage of every scan and test available at North Coast Radiology during those weeks. The scans show I have extensive metastasis in my spine, hips and a few areas on my scull; and spots in my liver. The liver is already showing a lot of improvement. Fortunately my brain and other organs are clear. The scans of my spine and hips are VERY scary and the associated pain is no fun. Mindfulness meditation, eating healthily and exercise certainly help. I'd love any advice or suggestions you have in helping to live with bone pain. I read messages of hope and inspiration on this site during that first scary week. I can't find words to express how much those stories helped - I latched onto the hope and advice to live every day well and to set goals. Kitty's message that, "in a strange way, those of us with advanced disease are lucky – we know that the important thing is to enjoy today and to live as well as we can" is forefront in my mind. So ... thanks to Kitty, one week to the day after I was diagnosed I ordered my dream campervan (over the phone on my way to Lismore for more scanning). Since I was a child I have always wanted to own a two tone Kombi campervan (my god parents, who I adored, had one) My partner and I are had saved and planned to buy a modern version in a couple of years but we brought our plans forward. We do have a basic 20 years old campervan we love but is doesn't have aircon. Not so comfortable driving in summer since we moved north! Thank you all for being here. I look forward to 'meeting' at least some of you.new to all this-diagnosis, illness, treatment-just thought I'd introduce myself
Hi there to all you lovely and courageous women who inhabit this site- just thought I'd introduce myself though I have already posted a couple of times so some may be familiar with me. Doesn't life change in an instant! I'm currently 55 yo and until a month or so ago I was a hard working medical practitioner, sole parent to a gorgeous 17 yo son (I understand that at times this could almost be a contradiction in terms, him doing the teenage thing and all), a road and hills cyclist, home renovator and a reader and music player in my private life. I remain most of these things though at current time I have given up my three jobs as I now submit to the whirl wind of treatment that is enforced upon us. Currently on day 2 of second FEC cycle so please bear with me if I drop in a few typos. Oh yes, and the piano playing and voice are also pretty feeble. I can pretty much book end my recent medical hijacking by the recent Rio Olympics. On the saturday morning of the opening ceremony, my cycling buddy and I were heading out for a training ride ride for Around the Bay. We watched a little of the opening ceremony and I disclosed some anxieties to her about my recent discovery of a lump, my visit to the GP and forthcoming referral to a breast surgeon the following tuesday. 'Anyway' I blithely reassured her 'probably nothing to worry about. They are mostly benign' Underneath, knowing the shocking history of this disease within my family, I knew I was not fooling anyone. From the following Tuesday, I was immediately swept up onto the very fast moving medical train of investigations, diagnosis, given a week to sort out my work situation and finally watched the closing ceremony of the Rio Games in post op recovery following the insertion of a port with first chemotherapy scheduled for the next day. And throughout all of this time, functioning (barely) through a torrent of incessant tears, sleepless nights and feeling like I'd been hit by a truck. My medical picture; small tumour (barely detectable on mammogram) but highly aggressive and (some) local node involvement, Stage 2b (I think), Grade 3, Oest +. Prog -, HERS 3+. A bit of a mixed picture from a prognostic point of view but I am remaining positive and actually feeling positive at a gut instinct level. However, i have a massive treatment plan ahead of me with FEC times 4, Taxol and Herceptin, Surgery and then ongoing Herceptin for about a further 12 months. It's going to be a long road even with all going well, obviously longer if I hit humps and road blocks along the way. My oncologist and surgeon have been excellent and they earned my trust with the speed and seriousness of their response to my situation, the highly professional and coordinated way in which they work together and their well thought out plan of approach. I also liked them being a bit bossy and taking charge despite my being a medical professional myself. As such, i am more than happy to submit to their clinical plan with my full confidence in their expertise in this situation. Doesn't mean that I wont have some specific questions for them when it comes to the point of surgery because I am developing some clear preferences myself as regards my options and they will have to present a firm evidence based argument should they be seeking to convince me otherwise. All questions for further down the track and perhaps yet to be further influenced by my response to treatment and the outcome of genetic counselling. So, currently trying to not have my life defines as being a cancer patient though it does take over a big slab of life. I'm trying to use and maintain my own strengths in the goal towards my recovery. Still get out on my bike when I can to maintain my fitness and flush that chemotherapy right through my system and at any lurking cancer cells, maintaining my yoga practice though it this stage it is much more meditation than postures which has really helped to calm the panic and the dread, playing my piano again when I can as this soothes my soul and finding I have a lot more opportunities to connect with family and friends now that I'm not flogging myself over three jobs to pay for my house renovation. Sure the bills are going up but I've had to put health (and survival) before finances and allowed these to go backwards for a while. I count myself as very fortunate to have had a well paid job for so long such that I can fiddle this with the help from the bank. And I'm enjoying the opportunity to immerse myself in the coming of the spring. I have kookaburras in the garden, bluetongue lizards lurking in my garage, a local parklands with an abundance of wildlife and nearby biketracks to transport me off in all destinations, though a nearby coffee shop is currently my usual preference. These delights are all very welcome distractions away from the general blah feelings of the chemo and my constant shedding of hair. if i feel too blah, i just resort to the Boxsets, currently watching Borgen. Very good viewing particularly when seeking to be inspired by some female empowerment. Anyway, enough from me by way of introduction. Very open, welcoming of thoughts, comments, impressions back.. Warm vibes to all, Fiona2
Need some advice on getting started
I have only recently be diagnosed, last Friday in fact. I see my surgeon tomorrow. A couple of weeks ago my housemate and I decided to join the local gym and try to get fitter, stronger and lose some weight (or a lot of weight). Then I got that phone call. Right now I am feeling overwhelmed by all this and not sure what to do about exercise. Is joining the gym still a good idea? Are there likely to be periods when I can't or shouldn't exercise? I went for a swim this morning as I really needed some time out and peace and quiet. It felt really good. Nothing as peaceful as diving into the water. Any advice or suggestions would be greatly appreciated. Thanks so much. :) Jacqui
