Sad and lonely
Hi everyone. I’m new here, recently diagnosed with high grade DCIS. I had a wide excision to remove the DCIS and margins. Results showed small amounts of invasive cancer in the margins, so a week ago I had another surgery to remove that invasive tissue and a few lymph nodes. I’ve been coping with everything pretty well and have a loving supportive family. I also have a huge network of friends. However, today, I’m sad. Like tears won’t stop. I haven’t had anyone visit me this week - I get it, people have lives and are busy, but I feel forgotten and as if people think it’s all over now… I don’t get results from second surgery until 2 June so the waiting is torture. I don’t understand why I am being so unreasonable about the lack of visitors!! Does anyone else feel this way? I also have a colleague going through BC treatment. She had a double mastectomy and is amazing- turns up to work straight after her surgery and seems to be coping so well. I feel like I can’t be honest about my feelings at work as my diagnosis is not that bad. Again, this makes me feel so selfish!
Docetaxel Side Effects FEC-D Long term side effects or menopause?
Hi all, its been several years since I posted on here. I'm hopeful someone can help. My apologies for my long post. I promise Im not a hypochondriac. I'm coming up to 7 years cancer free and should be living that life changing, "Im so greatful to be alive" kind of life. But I feel like cancer has added 20 years to my health. Anything that ailed me before treatment has amplified. My knees and ankles constantly ache. Its very hard to stand up from a seated position. I have neuropathy symptoms from the knees down. I randomly run out of breath. My hair feels noticeably thinner (it grew back white). My scalp constantly itches (no dandruff, just red) and I keep getting small lumps on my crown and the nape of my neck. I'm also getting re- occurring cysts in my arm pits, some have showed up in my breast during mammograms, but they come then go. Ive had chemo induced menopause for 6 years now. So much brain fog and vertigo. I now have osteoarthritis and to top it off, during my post chemo scans they found a lump in my skull towards the base of my neck which was deemed to intrusive to do a biopsy. At one stage I was told I would need yearly scans. I feel like its been put in the too hard basket. Ive been trying to get doctors to listen to my concerns for 2 years now. Ive also been trying to get a specialist to see me since June last year. I cant even get on their waiting lists. The team that looked after me during my cancer journey were absolutely marvellous. Now that Ive been 'signed off' help and understanding have been lacking. I'm on long waiting lists to have things looked at, living with the fear of re-occurrance is always at the back of my mind. Im going around circles with my GP but Im now too emotionally exhausted to make a change. I lived with anxiety and depression before cancer but now I feel it is overwhelming me. Ive tried counselling several times but I havent found them helpful. Dealing with this and lifes 'normal' challenges has really changed me. I have searched the internet for sites that deal with life after cancer. Trying to find out what side effects are common or potentially long lasting. How to treat them or how to deal with them. Are my symptons a result of treatment or is it a menopause thing? All the sites i find talk about treatment and short term side effects. Im hoping theres a site out there that might inspire me and give me back the drive to look after myself. Even a site for menopause after triple negative breast cancer would be very helpful(preferably an Australian site). Ive been told to avoid any hormonal treatment. Are there other options? If there is anyone living a similar outcome to me, what are you doing to help your self? How are you treating menopause after TNBC? Whats working for you? Thank you if you took the time to read my post, I know its a long one but i really appreciate it.
Total left mastectomy vs expander/implant?
Hi everyone - I’m newly diagnosed and have found BCN hugely helpful and reassuring. I have bilateral early cancers - invasive ductal (left side) and invasive lobular (right side). ER + PR + HER2 -.I believe ‘low grade, slow growing’. My treatment recommendation is: left side mastectomy, nipple/skin sparing with expander then later implant and right side lumpectomy. Followed by radiation and letrozole. Surgery scheduled for 22/11 at Chris O’Brien Lifehouse. The choice I have is left side total mastectomy or the reconstruction? For context, I’m middle aged, slim/small breasted and physically very active. Apart from the obvious surgery and post operative worries, my other concern is around the possibility of spending many months with ongoing breast related issues. Wondering if any of you have had a similar experience….and any thoughts/advice you might have? Thank you 🎀
Lung nodules
Morning ladies, It has been ages since I have put a post up but I regularly check in to make sure all my pink sisters are doing ok! I am now living in country Victoria after my husband told me the marrage was over (app he found my cancer journey all too confronting!) I had to go to hospital on Monday as I was feeling faint, breathless and my heart was racing. 3 days in High Dependancy and now on a beta blocker to slow my heart rate. On my discharge summary it says they found multiple nodule in both lungs! freaking out !!!! No one said anything to me whilst I was in hospital, I am seeing my onc on Mon. Has anyone else had lung nodules? Will try to keep calm untill I get to see oncologist but am feeling quiet alone at the moment. xHormone therapy struggling in 4th year
Ive been taking Aromasin for just over 4 years along with medication to help me sleep and for depression and magnified anxiety. I have back ache, stiff joints, hot flushes and struggle to think straight and get my words out. I'm not sure what feeling normal is like anymore, is this the medication or how I am now? I am 64 years old this year, I exercise, maybe Im just old now. I haven't had online discussion before when I went through surgery, chemo or radiation, although I did look at discussions and that helped. Im finding now that Im needing to know how others have managed through the long years of hormone therapy. I have had breaks of one month every so often but I find its harder getting back on the Aromasin after a break as I don't get much relief. My oncologist has said as long as I do 9 months in a 12 month period that's okay but it gets harder to go back on it. I would like to know how others have managed to finish 5 years of hormone therapy or 10 years (amazing women, my hat goes off to you all) Sometimes it feels like I'm the only one doing this, I know I'm not. Also how does your body and emotions feel after finishing hormone treatment, like how different do you feel? How long did it take to realise you were better or doesn't that happen? Is there much or any difference? I guess I'm living in hope that I'll finish and not need other medications when I finish hormone therapy and that my body and emotions will feel better. Thanks for your input. X
TERRIFIED of Treatment
I’m not sure I can convey in writing how terrified I am I’m not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I don’t want to get out of bed I’m at a point where I don’t think I’m going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I don’t think I can mentally survive this and am seriously considering not going on Tuesday.
Anxiety, hot flushes and gebapentin- help
So I thought chemo was hard.... tamoxifen is kicking my arse!! Went to the menopause after cancer clinic today and they were lovely. She has put me on Gebapentin for the hot flushes, just wonder how others use of this has worked for them? Has it also been successful with anxiety and moods? I am really struggling with feeling anxious all of the time! I don’t know if it’s the post cancer struggles, tamoxifen, menopause, the pressure of a new job or all of them!! I’ve never really had a problem with anxiety before but I can stop feeling sick, crying and just generally feeling rubbish!!! Any tips appreciated
Light at the end of the tunnel
Hi all, Well it has been many many months since I have posted/updated on the site. July was my last post. On July 28th I had my bilateral breast reduction. (I went from a DD to a B cup) but the Ca. is gone (fingers crossed). On the day of my operation the surgeon [doctor's name removed by moderator] found out that I had Sentinal Node involvement.. it turned out to be 44% KI 67. So that meant I was going to have to have chemo... it turns out the Ca. I have/had was aggressive after all... Grade 2 42mm but first diagnosed at 33mm. I only had 1 node involved.. Surgery done under the public system and could not complain at all about the treatment. Still getting used to the B cup tho tho, she even saved my nipples which im happy about. 2 weeks after surgery I was back at work... and the only other break has been over Christmas for 3 weeks while i had radiotherapy which i got pneumonia during it and was not well... but got through it. I had 2 doses of FEC and lost all my hair. that was devastating and I hated it.. and then the Oncologist put me on Pacletaxal and I chose to do only 3 doses. (I dont think i need to justify my decision, so i wont). I had 16 days of Radiotherapy = 160 doses.. and finished that 3 weeks ago tomorrow (Monday). My hair started growing but around late Nov and I now have enough to not worry about scarves and hats...but I still hate having short short hair. So,I was suppose to have started Tamoxifen but I have decided to wait for a few months and see what my body does first. I know it will suppress the Cancer if there is anything there... but again my choice. Apparently I am post menopausal which i had no idea I was ... thinking i was peri so this has been a good thing ... Well here I am Feb 5th and started this journey on June 6th,,, tomorrow will be 8 months and it has been a journey I wish on no one but it seems it just keeps happening... I have learnt so much about Cancer and treatments and emotions and everything else to go with it.. i can tell you all about side effects and feelings and it is something as a nurse I would hope I never had to do but it is real and it happened to me to give me this insight into all of this.. who knows what my future holds now but Ill get on with living and working and riding my bike and just talking about it to anyone who wants to hear so they are aware they are not alone and they can get through it being what ever choice they make. oh and the one biggest thing that has been awesome out of all of this is my friendship with Cath whom I met on this site in July 16 and recommended Dr Saliba to me... she is one of my dearest and awesomeness friends and I love her to bits.Drs have conflicting views..
Hi all, really appreciate any advice on this one, have no idea which way to go. Had hormone receptive tumour, small 1.1cm, did surgery, radiation... then medical oncologist said need no more treatment..this is contrary to surgeon, gp and radiation oncologist who all think hormone therapy (Tamoxifen) is necessary.. but won't stand those opinions up to medical oncologist. Went back to med onc, asked to go on hormone therapy, I want to do everything I can to prevent bc coming back. He said side effects can be brutal, only improves chances by 1%, not worth it, if it comes back deal with it then... was horrid in his words, acted like bc was a nothing. He was a complete pratt. Anyways I got script, Tamoxifen, doing pretty good, only side effect really is dizziness...so am blessed compared to most... however dizziness quite bad, had 3 falls now, in last fall fractured cheek bone and multiple cuts and grazes. Went back and asked for some medication for dizziness side effect. Got told... Tamoxifen not worth it, just stop taking it... like wtf... I wasn't complaining, I want to do everything I can to stop this dreaded disease recurring, just needed a hand with the side effects. I'm scared to not take Tamoxifen, feel like I wouldn't be helping myself.. I know its not a guarantee but surely buying yourself a bit more of a chance is better than doing nothing.... drs have got me really confused and acting like I'm bringing side effects on myself. Is anyone else with hormone receptor tumour doing hormone therapy... or have you also been told side effects outweigh doing it. I had thought HT was pretty standard. Can I also throw into the mix I've had 2 melanomas as well as multiple squamous cell carcinoma skin cancers, so clearly cancer cells are quite prevalent in my body in different forms... hence whilst trying to help myself with this bc. Would so appreciate hearing anyone else's story on what their oncologist has got them doing... Many thanks for taking the time to read this... 😊2016 -2021 The Journey continues
Hi, It has been 4 years and 8 months since this journey of Breast Cancer started. I have been reading back over this chat and wow how that time changed my life and everything around cancer. So on July 28th, I went to Auburn Hospital for my operation under Dr ***. 4 hours into the operation she was notified that I had 44% cancer cells in my Sentinal Node so other nodes were advised to be removed. 23 nodes later,,, gone. This then brought my operation up to 6 hours. Recovery went fairly well. I was able to go back to work 2 weeks post op and did light duties and haven't stopped. Unfortunately, at pre-op there was no indication that I had an aggressive form of cancer so I had to undergo chemo, which was not discussed previously, only Radiotherapy treatment for 6 weeks. So fast forward to September 16 and I am going in for a Port a Cath insertion at Prince of Wales as there was nowhere doing them at the time I needed to start chemo. I had the first 3 lots of aggressive chemo and said no more. I was still working and no quite sure how I go through all of that but obliviously I did. I then went onto 3 more doses of chemo and again said no more. I never wanted chemo in the first place and should of stood my ground but I listened to the Dr's as it was routine, well routine is not always right for everyone. Radiotherapy was also dropped to 16 days with 10 shots per visit, so 160 doses.. and yeah the boob is now fried and wont move..although it is getting softer to touch. So from Jan 2017 - Oct 2019 I got on with living. I ended up with Lymphoedema in the left arm,, not good but I have a great network with the Lympho Therapist and sleeves. I was going really well, working, riding my motorbike and just getting on with things. In July 2019 I got a very sore left knee, thinking it was just arthritis I let it go for about 10 weeks. When the pain became so bad I went to a new GP who sent me for ultrasounds.... nothing other than OA. Ok, so lets do a bone scan just to have a look and see. Scan was done on a Monday, results were to be picked up on a Wednesday. We didn't find the answer to the pain in the knee, although there was OA but they did find 5 lesions in my bones. 1 in the skull, L1, L2, L3,L5. no symptoms at all. Ok, so where to from here. A new Oncologist (the last one and I did not Gel). New medications, Immunotherapy meds. Palbociclib 125mg and Arimidex 1mg. Three months later I had another bone scan to see how it was all going. Damn again, another 7 lesions. T11, S1, L4, Hip and Socket joints, and hip area. So all up 12 lesions. They did a biopsy on the S1 and I would not wish that on my worst enemy, it bloody well nearly killed me. The results came back as the same Breast ca as before so this was treatable. During this time in Oct 2019, I became a Nanny to my little man Archie.. I am so in LOVE. Fast forward again to 2021. A few more bone scans every 6 months, blood tests every month for ca markers, 21 days of Palbociclib, and daily for Arimidex. I am now 18 months into this next journey with Stage 4 Metastatic Breast Cancer. I still work as a Clinical Facilitator for Universities looking after RN Students, although I feel tired all the time. I still ride my motorbike, hubby and I brought a Motorhome to start going away,. In 2018 I did a Cert IV in Celebrancy and became a Marriage Celebrant in March 2019 and I am about to go down the pathway of learning how to be a Funeral Planner/Director. I am currently a Funeral Celebrant. This is my business and I love what I do. I am also a Justice of the Peace now. So yes life is somewhat busy.... hahahaha... well totally busy but I love it and it will keep going as long as I can keep going. I am in the process (slowly) of planning my own funeral. It is not morbid, it is reality and I want to go out the way I want. My family will just follow my lead and plans. All going well, I hope to have a pre Funeral party and have all my friends and family there to see me before I kick the bucket, but I am also very much aware of living while I can. www.lovelisallaroundus.com.au This is my website and it means I get to share my love, friendship and hope with everyone.