Neck, shoulder and back pain due to imbalance after single breast mastectomy
I would like to hear from anyone who is suffering from the above. I had my surgery in 2004 but over the past 3+ years I have endured excruciating pain, and undergone every medical test, physio plan etc known and the overwhelming advice is that my problem is the imbalance. Apparently the scapula is overworking on the L side (mastectomy side) and twists the spine.. hence all my woes. The L breast weighed 1.5kgs (as per the pathology report) I am a D cup and it seems common sense to me that there is no way we can balance that up with either an external prosthesis which weighs around 350 gms, and I do not want an implant for the left side and a reduction for the right. I am seeing a surgeon in a few weeks regarding having the remaining breast removed... and have heard that many suffer.... please let me know as I feel this should be highlighted for those affected. It may be that a great number are suffering in silence, or putting it down to "ageing changes" ! Take care everyone, and thanks- Mandy
What do bone Mets feel like?
Hi Gals I was diagnosed almost a year ago with stage 3C DCIS - (Beryl for those in the know!) Beryl was pretty busy and managed to have 13 not so darling babies (lymph nodes). So a mastectomy was on the table and as I was awaiting test results for BRAC gene I decided to go for gold and do two for the price of one - I do love a bargain! Results of the test came through the day after my surgery and I was indeed positive for BRAC2 gene. So Beryl and her kids had been rendered homeless and I had the usual chemo, rads and AI’s to ensure they did not come back. All was good until about 3 weeks ago when I started to feel persistent pain in my rib (same side that Beryl and the kids popped up on). I have a CT scan on Friday but just wondered if anyone could describe the pain. I have pain that comes and goes (mostly there) and goes from a sharp pain to a dull ache. I am hoping the Beryl has not decided to return! Any advice?
Tamoxifen, Bone aches, brain fog and poor memory. Any one else experiencing these?
Hi all, I tried to put this in the tests and treaments category but for some reason it won't let me. So I'm on week nine of taking Tamoxifen and having some serious concerns. Apart from the ever popular hot flushes, my back and hips are aching constantly. Not too bad through the day when I'm moving around a lot, but quite painful at night in bed or sitting. This one is the more worriesome to me at the moment. Very poor short term memory I have to write notes and set alarms for everything at the moment. I am struggling at work when it gets busy. Poor concentration. I am going from the middle of one task to another instead of finishing the first. If it's super busy i.e paperwork, phone ringing, people asking questions, making appointments all happening at once it's like my brain shuts down into this cloud of fog and I have to walk away for 10 minutes so I can think again. I have trouble remembering words during conversation. Occasional light headed, dizziness. Just generally feeling like a bit of a space cadet at the moment. :) So much so, that I asked my GP to schedule a brain scan! So I decided to stop taking the Tamoxifen for a few days and guess what? Within 48 hours I was clear headed. This isn't constant some days my brain works fine LOL, Just wondering if anyone else is experiencing any thing like this.
Fretting
It's the middle of the night and I'm having a quiet fret about rib pain. I woke up from my BMX & recon (27/4/18) with a sore lower left rib. I queried it with my PS when he deigned to speak to me but he dismissed it with a 'we did a lot of pulling and stretching in the area'. It's never gone away, coming and going at various times. However the last few weeks the pain has got stronger and more frequent and I've started to have a worry. I know it can't be bone mets but there's this little niggle in my mind, those stories you hear about people thinking they had a gym injury or something like that, only to discover months later that it's not that at all. I don't want this worry to eat me up so I went to my GP this morning, confessed to being a cliche and explained. She was totally understanding and very sympathetic, examined me (I am very sore on the left) thoroughly and suggested that I have an xray of the area to start to find out what's going on. She also said I had "quite prominent ribs". What does that mean?! But now it's the middle of the night, my rib hurts, and every tiny throb of pain in my body is magnified a thousandfold. Fret fret fret...
Exemestane and Joint/Muscle/Tendon Pain
I know this subject has probably been done over and over but I am interested in finding out if anyone has had success with controlling severe pain caused by aromatase inhibitors. I have had endometrial cancer and breast cancer. Both primary cancers. Both hormonally driven. As a result I need to stay on HIs possibly for the rest of my life. I'm 54. This journey started when I was 49. I did 14 months on Letrozole and 11 of them were pure hell. The pain I felt was unrelenting. It started in my hands but quickly moved to hips, knees, ankles, feet. Standing was horrible. Walking any distance impossible. I tried: Exercise - aqua aerobics and swimming Tumeric Duloxitine Magnesium Ibuprofen Celebrex My oncologist changed me to Exemestane and I have been on that since February this year after a 4 week break. It is much better but I still have pain when I stand and walk and have developed issues with my Achilles tendon which is very painful. I have dropped the Duloxitine and Tumeric (the pain didn't get worse because of this), still take 100mg of Celebrex morning and night. Use Voltaren emugel and Magnesium (soluble) at night. I take Vitamin D. I have been going to a specialised gym that works with cancer patients and that has also helped but currently I am not going because of the Achilles problem. I have seen a rheumatologist, a physiotherapist, exercise physiologist. I really would like to find a pain medication that actually takes the pain away when I walk so I could walk and get back to the gym a some semblance of normality. I have recently also stopped working, partly because of these issues. So, any suggestions/ideas I can talk through with y medical team.
Radiotherapy
I session 22 of 25 and skin has completely broken down and peeled off under breast , areas of chest as well as blistered and bleeding and dark red to mahogany colour from under arm all way down side then right across chest and under breast. It’s excruciating- making nauseous. Had anyone’s nurses offered dressings etc this stage - I’ve just been told to use moisturiser and keep breast from rubbing- disappointing at this stage - has as no other nurse available- don’t want to fuss but omg I’m in pain and already on opioids. Any suggestions? 3 to go..
Arimidex
I have been reading through the blogs about Arimidex and found them very interesting. I have been on Arimidex for 6 months and up until 4 weeks ago, "side affects free" - until now that is. I now have what appears to be the usual aches and pains in the legs and numbness in the hands, tiredness and headaches, so I guess I didn't escape at all I am just like all my other Arimidex sisters. I will have to mention this to my oc next visit, but as so many others have said before at least I am here reading the experiences of others. It does help.
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
Medicinal Cannabis Oil & reduction of pain, improvement in well being
Hi guys I've also put this link in the 'Early Days of Letrozole' thread - as so many are having extremely painful side effects and watching this video (shown last Dec) that follows the life & death of Dan Hallam (a young Aussie with Bowel Cancer) may help ..... The use of Cannabis Oil as a pain killer can make the difference in quality of life in MANY cancer sufferers (and other nasty conditions which can otherwise be debilitating to the extreme) ...... as this video shows as it follows the story of many (particularly kids.) Please watch the entire video before commenting ...... it takes a while, but it is well worth the watch, as it is Australian made & relates to our own health system. Share the link with family & friends. We NEED this to be freely available to those in chronic pain - especially those with Mets BC or extreme pain side effects from AIs https://www.youtube.com/watch?v=cmEjlMdLi5wDiagnosed 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.