Are you experiencing pain following treatment?
Register for the Persistent pain, addressing quality of life webcast on Wednesday 7 February, 7pm - 8.15pm AEDT. Register now (and if you miss it, we will email you the recording) This webcast will address types of persistent pain associated with early breast cancer treatments, strategies to manage pain and further resources and support that may be available to you. We will be joined by three experts on the night, Professor Paul Glare, Pain Medicine Specialist, Dr Charlotte Tottman, Clinical Psychologist and Naveena Nekkalapudi, BCNA Consumer Representative. Naveena will be sharing her experiences of persistent body pain and why quality of life is paramount to her. You will have the opportunity to put forward your questions when you register or during the event. For more information about the webcast and speakers, and to register, please visit https://www.bcna.org.au/event-directory/webcasts/persistent-pain-after-breast-cancer/ Please feel free to pop any questions below in the comments or get in touch with the events team via events@bcna.org.au. We look forward to seeing you there!
Growth during chemo??
I have had a lumpectomy, finished 16 rounds of chemo and 1 week post mastectomy. Prior to my mastectomy I had a CT scan on my back after a week of severe pain. This was 1 week after chemo finished. After seeing surgeon post op today they have concerns about something that showed up on scan. It wasn’t there in April before I started treatment so if it is a tumour, it grew whilst on chemo? I am miffed as to how this could happen? I have a PET scan on Wednesday and I am so scared! Has this happened to anyone else?
New to this site, pain medication
Hi, I am new to this site. I have mets in lumbar and thoracic vertebrae diagnosed in Feb this year and I would like to hear from others how they cope with pain. It overwhelms me that my doctors get my pain under control but within weeks the doses have to be raised. Is this normal? The only treatment I am having is denosumab monthly , Thankyou, Lesley
Drainage am I going crazy?
Hi all i had a mastectomy on right breast and auxiliary clearance three weeks ago Wednesday. First drain out no issues. Second drain removed earlier than should have been as it was sitting on a nerve. I was still getting 250-300 ml a day. Been to see surgeon once to get it drained. Needed to get it done again last Friday but could only see gp. She hadn’t done it before so tried three times. Third time lucky but didn’t get it all. I am phoning surgeon first thing tmrw to get it done tmrw ( holiday here today). I still have lots of fluid and now it feels like it has hardened in some spots. I’m swollen And in pain. Having trouble coping with all this tonite. Has anyone had this? The actual mastectomy was fine but I have had issue after issue from aux clearance. It’s all overwhelmed me right now.
Trigger fingers, Wrists clicking and painful, Pain in feet,-Letrazole?
Hello everyone, I hope you are all as well as can be. I am now 4 months into Letrazole. About 8 weeks I noticed my middle finger on both hands was becoming very stiff and clicking when I woke up in the morning, this has progressively got worse, my physiotherapist has recommended buddy taping to my ring finger on both hands “till the inflammation in my tendons subsides” I have two problem with this. 1 After doing this to immobilise the joint my finger is not able to bend - I need it to work properly 2 I believe while ever I’m taking Letrazole the inflammation is not going to subside, it seems to be quite the opposite. Now my wrists have joined the party, most movements up and down are painful or sideways like picking up a cup to drink they are sore and click. Elbows, shoulder, knees and feet are also involved. I noticed some of you have said that your discomfort settled after a while. My discomfort is building daily now and I don’t get to see my oncologist till early December, I think I will be a total wreck. I do have an appointment with my GP on Monday for an updated referral to the surgeon on Tuesday who is going to remove the PortaCath, can either one of these change my meds? Has anyone here opted to not take the hormone treatment? Does anyone know what the numbers are in favour of continuing with it? Thanks for your time.
The good, the bad and the potentially very ugly
This week has been a mixed bag. I visited my oncologist for my annual check up and all was good with my follow up mammogram and ultrasound and tumour marker blood tests and my bone density has even improved! The not so good news is that my blood sugars are high so that’s being followed up with my GP. The potentially ugly news is that I’m sitting here waiting to go in for a bone scan as I’ve been getting some strong pains in my back over the past month or two and despite trying to wish it away, it’s still happening. Handing in my referral with the words “to rule out metastasis” is sending my stress levels through the roof ☹️
Cannabis therapy : have you tried it? how do you access it? how effective is the treatment for you?
I would like to get an idea of how widespread cannabis therapy use is amongst people living with breast cancer. If there is enough interest, might we consider joining the broader discussion about medical cannabis access and legality. It’s all well and good that legislation has been passed regarding access to medical cannabis but the reality is, few are able to access the scheme. My Oncologist and GP are both supportive of my cannabis use but told me it is difficult to access unless all other treatment options have been exhausted. I started using medical cannabis about four months ago. I was motivated to explore the treatment after talking with another cancer patient who was having outstanding relief from cannabis oil. I hit doc Google hard for a number of months, reading and researching all I could about medical grade cannabis. I learned about the different strains of cannabis, about CBD, THC & CBN and the many different cannabis and hemp products now available I also learned that there are people selling ‘medical cannabis’ that has no active ingredients. So, a reliable supplier is very important. I eventually discussed my thoughts about trying medical cannabis with my oncologist. He was supportive of my using it for pain management and asked where I planned to get it. The place I mentioned has been in the business for a long time and has a good reputation for supplying quality products. A lot of cancer patients in the region go there. I take cbd paste for pain management and cannabis oil in the hope that it will kill off the Mets in my bones (oncologist not as optimistic as me re the oil). I have had outstanding results in terms of pain management. I was taking Palexia SR150 mg twice a day and Panadol osteo three times a day. For those unfamiliar with Palexia, it is a strong opioid used for managing pain - it effectively numbs pain and your brain. I now only take cannabis extract to manage my pain and I feel so much better. My bloods are normal and the disease is stable; I have Mets in my bones but all my organs are now clear :) FYI - I am also taking Femara 2.5mg and Kisqali My health skyrocketed soon after starting this treatment. It seems the ulternative and conventional meds are working like a dream together. I look forward to reading your stories. If it might be useful I will write a summary of our experiences
Did I really sign up for this?
Okay. I know the doctors won’t tell you all the side effects just in case they don’t happen. And I know their success rate is what really counts so they don’t want people to opt out. But seriously? People in pain after treatment is not, in my eyes, success. Giving people Endone to shut them up about their pain is not success. Specialists telling you to go to your local GP because they have done their job, is not success. Would I have chosen to opt out if I had known? Not sure, but knowing how I am feeling right now, possibly. I can’t even cry because it hurts to. New GP appointment at 11am. Two of my GPs have left the practice (one on maternity and the other to pursue full time teaching) whilst my third choice is too busy so off I go to bare myself and be poked and prodded by someone new. Sigh! I hope everyone else is having a good day. Thanks for listening.
Pain/mood management
Pain is an issue for all of us at (most) times during treatment. I've taken the usual assortment of painkillers on offer and they all work on me. They come on slowly and then wear off and I try to hurry home (if I'm out which is usually the reason I take a painkiller). The last 2 weeks I've had a patch put on me and it's lifted my mood. It's stopped me crying whenever I'm alone AND has taken all my (physical) pain away. I didn't ask for it. It was put on me by my radiologist who knew what was coming up next (lots of blisters). Has anyone else been given pain patches? I'm wondering why I wasn't offered them earlier and saved myself 12 months of tears (I have been seeing a cognitive therapist). Am I getting better or is the patch tricking me into feeling good? I'm worried about returning to my teary emotional self once the patches are ceased. I don't see my therapist until next month.
