Recurrence in lymph nodes
Hi everyone, I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018. Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!! I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason. Worried and sad, but trying to be strong. Sally
Lymphoedema and recurrence fears
Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries in 2016 and life kind of took over. I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?
Triple Negative Breast Cancer Survivor
I had Triple Negative Breast Cancer diagnosed back in November 2012. Now after all the treatment and appointments, specialists and monitoring, I am still here and so far so good. I don't regularly came onto the BCNA Website now, however I was a prominent visitor for the year of 2013, for those who recognize my photo. After all the successful ops, chemo and rads, we moved to Sydney and been here for 2 years. I had taken a year off during my Cancer and it was necessary. The return to work was difficult and I went back part time. My brain was like mush originally and my work place tolerated me with kindness. I returned as a Pharmacy Assistant, and stepped into a very busy work place here in Sydney, but still working only 4 days a week. They have given me zero responsibility and menial tasks. I was upfront the week before my 6 months probation finished, about having had Cancer. I was called in for the Familial Genetic blood test, and discovered there was no connection. They just put it down to "Environmental". I have learnt that people who have not had Cancer don't understand what it is and have short concentration spans if you try to involve them. The ongoing health situation, or physical ailments you may get are also something people have no idea of and little tolerance for. I am healthy and learning to play Golf in a Clinic - and enjoying the challenge. My right arm is not over the moon about it, (underarm and elbow, with slight discomfort), but I simply just go through each day now as though Cancer never happened. Although it is always at the back of my mind. It is the yearly monitoring and weekly checks that keep me real. Survivor Belinda McKenna
Baseline Measurement for Lymphoedema
Due to cording issues, I see a specialist physio on a reasonably regular basis. The clinic treats cancer survivors and obviously, lymphoedema issues. Last visit, the physio decided it was time to measure and scan me again for any swelling in the arm. My scan came out high (but it's a new machine so possibly that could be a factor) while my measurement came out low. I'll be getting it checked again at the next visit. Unfortunately, I have no baseline from before surgery to compare to. I asked the physio if this shouldn't be done for everyone before surgery and her comment was that it should be but never is. My question is: has anyone had a baseline measurement done before surgery? I'm curious as lymphoedema can be such a problem so it would seem to make sense to be able to recognise it before it gets bad. Is this just another area of "after" that is not considered?
Disability pension
I am currently applying for a disability pension with my husband as my carer. I just cannot figure out how I would get a job in the first place. I used to buy and renovate houses but my main arm now has lymphedema so even using a hand saw for any length of time is out. I thought about retraining and perhaps doing a course in selling real estate but I have little short term memory courtesy of chemo brain which looks like instead of the one year to recovery may be the 4 to 10 years’ time frame. My nearest town is 40 mins drive away and with my hubby driving I cannot stay awake in the car either to or from town so driving myself to even volunteer clothes sorting or something menial like that is out. With all of this I have developed depression and I requested to see a psychiatrist who has put me on some medication. This medication also makes me not so much tired but a little disoriented and 'chilled'. Just walking alongside the road in the supermarket carpark my husband had to take my hand yesterday as I was sort of drifting over in front of cars driving past. In the shopping centre, every one passing by me and walking to and fro in front of me had me a little disoriented and my big son had to take my hand and lead me to where we were going. At least I am sleeping better now with no panic attacks from dreams I can’t remember. I only keep waking now from bone aches which is annoying. Apparently it is pretty difficult to get on a disability pension nowadays so I will let you know how we get on.
Lymphoedema Sleeves
I purchased my first sleeve through the breastcare surgeons rooms and cost $79 for Jobst sleeve. However as I was made aware I would now need to wear this EVERY DAY for the rest of my life I checked around for better prices. I found a site in the US that sent very quickly and they also had a silicone topped sleeve which was a couple of dollars dearer but it grips and stays up and doesn't roll down so its my "good one" or "going out" one. I also found a place in Vic who send sleeves out and cost was $53. FYI Here is the screen shot of my order. HOWEVER, HUGE BUG BEAR OF MINE IS THAT IF YOU GO THROUGH THE PUBLIC SYSTEM YOU ARE GIVEN THREE A YEAR FOR FREE!!!!!! However, it is nigh near impossible to get into that public system once you've had surgery in private. In fact I am yet to get a breast care nurse - A year yesterday since diagnosis. Ive emailed, phoned local hospital and McGrath foundation, and even had my GP write and phone the local public hospital - yet to no avail. McGrath nurses listed aren't still doing it and there is NOT ONE McGrath nurse on the Gold Coast - Unbelievable. There is one at Tweed Heads, two at Ipswich and many more in Brisbane. Anyway that's another story. I did get a letter from the Gold Coast university Hospital responding to my GP's letter and phonemail saying they hope and estimate I should get an appointment within say 90-120 days!!!!!!
Lymph node status
I was just wondering how cancer in lymph nodes is detected before surgery. Some women already seem to know their lymph node status before their operation. Was this diagnosed through ultrasound, mammogram, MRI or pet scan? All of these tests suggest my lymph nodes seem ok, but the surgeon tells me a substantial number will have to be removed in the operation anyway. (I am currently undergoing neoadjuvant chemotherapy.)
Lymphedema and bras?
Hi everyone, I haven’t been on this forum for awhile, I have a question. I’ve been wearing new supportive bras for a few weeks ( no underwires), discovered since wearing them my arm , surgical area and breast is swelling and tender. Have been having lymphatic massages every 3-4 weeks as a preventative , started dry brushing, and I have a sleeve to wear during the day when I feel the need, or if I know I’m going to be using my arm a lot doing gardening etc. Unfortunately I’m a 12E, so going without a bra makes my back sore by the end of the day. Wore a crop top today, arm feels better, but I need more support due to my breast size , looking for recommendations and ideas that has worked for you. Has anyone else been down this path? Thank you in advance.
The gift that keeps giving 😞
http://liz.oriordan.co.uk/CancerBlog/moving-on/?post=one-door-closes I just received this blog post in my email What Liz has to say is all so true and so devastating. I've been navigating loss of job & identity since before my BC diagnosis nearly 4 years ago, but bc continued to take. I developed lymphoedema very soon after surgery, going into my first sleeve at the 6 week mark. At the time I was working in a clinical nursing capacity. I continued in that job for around 6 months, during which time my very supportive workplace tried to find as much non clinical work for me as possible. In the end, as I was only working 2 days a week, but needed more days financially, I decided to look for alternatives. I was very lucky in the last 2 & 1/2 years to have found 2 non clinical nursing roles, that I've thoroughly enjoyed. Like Liz, if I'd been working in the cancer sphere, I don't think that I could have coped with that emotionally. Just shows how cancer doesnt discriminate. I'll be thinking of Liz, & wishing her all the best as she moves in to this next phase
