Preparation for mastectomy + DIEP + potentially port removal
For the short read: What exercises for PRE-surgery do you recommend? I have about 2 months time, am 45 and generally fit except for limited mobility in one arm due to a pesky port that won't ever heal properly (see deep read below if interested). For the deep read: So I hear this is a 10 hr surgery with my arms up over my shoulders and people leaning over them. Obviously lots of incisions and wound care to follow as well as time appropriate physio and exercises. I'm still 2 months out from surgery and would like to be as prepared as possible since I've previously suffered shoulder bursitis and subsequent frozen shoulder on both sides (at different times fortunately!) that lasted many many months (less the 2nd time as I could feel it coming on). Any pre-surgery exercises to recommend? I also have had problems with scar healing. My port insertion was the first time I've ever been cut and stitched up. I had it first become dehiscent, then redone 6 weeks later, then lots of spitting sutures. After another 8 weeks the skin was irritated from taping so stopped that. But in a week, the scar continues to widen without taping and is now 2cm wide! Have now started back on with stratamed and taping but using a gauze over the wound because it now got a bit of exudate. Yes, nurses and doctors monitor it, I have suitable antibiotics on hand, but since they saw how bad it got last week I've been told to be extra vigilant and go straight to ED with a low tolerance of anymore funny business or temperature of course. So stretching back on the port side is currently difficult. Many many thanks for all you lot helping each other out ❣️73ViewsSign in to react to this post3CommentsPrepations for mastectomy + lymph clearance + DIEP + potentially removing port surgery
For the short read: What exercises for PRE-surgery and items to have onhand for POST-surgery do you recommend? I have about 2 months time, am 45 and generally fit except for limited mobility in one arm due to a pesky port that won't ever heal properly (see deep read below if interested). For the deep read: So I hear this is a 10 hr surgery with my arms up over my shoulders and people leaning over them. Obviously lots of incisions and wound care to follow as well as time appropriate physio and exercises. I'm still 2 months out from surgery and would like to be as prepared as possible since I've previously suffered shoulder bursitis and subsequent frozen shoulder on both sides (at different times fortunately!) that lasted many many months (less the 2nd time as I could feel it coming on and do exercises). Any pre-surgery exercises to recommend? I also have had problems with scar healing. My port insertion was the first time I've ever been cut and stitched up. I had it first become dehiscent, then redone 6 weeks later, then lots of spitting sutures. After another 8 weeks the skin was irritated from taping so stopped that. But in this last week, the scar has widen without taping and is now 2cm wide! Have now started back on with stratamed and taping but using a gauze over the wound because it now got a bit of exudate. Yes, nurses and doctors monitor it, I have suitable antibiotics on hand, but since they saw how bad it got last week I've been told to be extra vigilant and go straight to ED with a low tolerance of anymore funny business or temperature of course. So stretching back on the port side is currently difficult. I understand I'll be a fairly sedentary for the first while. For items after surgery I found such things - any comments? Any brands or items you tried that were no good? Mastectomy ice pack strap thingy https://ebay.io/m/lgO8Mh Wedge pillows https://ebay.io/m/l4HXiR Different ones https://ebay.io/m/YhKxGI https://onelink.shein.com/58/65zvq6nbsrcr Will I need a girdle? Where to get, what to look for? Skins brand compression items were mentioned elsewhere in forums. Any relevant for my case? A bit of chest compression with this chest binder? I'll be a 10A-B with DIEP flap https://onelink.shein.com/58/65zwsvn5cwfj Or this just looks like a tight tank top https://ebay.io/m/DeByYA Best wound healing products? I've got stratamed (didn't use from beginning or consistently. Just started again now). Tips for use other than what on the package? Any tips for avoiding spitting sutures? Yuck and annoying! 😭 Many many thanks for all you lot helping each other out ❣️10ViewsSign in to react to this post0Comments
Today's feelings in poetry
Lucky So lucky, people say. That they caught it when they did That it hasn’t spread That they got it all That I have insurance So, so lucky. That my friend told me about her cancer That I finally moved my arse and Went and had that mammogram That I live in the lucky country So lucky That my prognosis is good That my job will be there for me That I am surrounded by family and friends With their love, soup and casseroles. Lucky. That my new set are perkier Smaller, Scar-rier, numb-ier. A bit lopsided Like me. Some days though, I just feel A tiny bit Unlucky.338ViewsSign in to react to this post5Comments
Advocating for Exercise in Breast Cancer Groups
i just wanted to raise some awareness on an issue that has been bugging me and say something here. i have stopped participating in cancer groups because even though groups like this called "get active and keep well", the general fear and disapproval from other members is if someone starts exercising "more" than the generally accepted idea of what exercise is. anything more than that idea is frowned upon, and people have made me feel so angry and sad for sharing something that i am proud of and something that empowers me. with this group and other ones for breast cancer, after i share information about doing some exercise and training after my surgery and after chemo, i have had comments that really shot me down and basically either flat out said that i need "a reality check", or alluding to the fact that the best thing that i can do right now is rest, NOT exercise, and some had attacked me saying that i am putting myself up to put her down (!!). some saying "i wouldnt do that if i were you". well guess what... they are not me. and i am not them. most of these types of comments i have found came from people who have not had the same powerlifting training as me. or from people who did not have an athletic or regular exercise routine at all prior to diagnosis. and these comments have not only hurt me, but made me feel angry and frustrated with the very little emotional energy i already do not have. what i decide to do with my cancer experience is safe FOR ME. for example, women, let alone cancer survivors are fearful of anything to do with strength training. i will not go into the reasons for this and i will not go into the enormous benefits for strength training for women. but i'll give you an example. yesterday i went to the gym and felt great for it. amongst other things, i did 50kgs deadlift. now, if my best deadlift prior to diagnosis was 3 reps, 3 sets of 80kg deadlift prior to diagnosis, and i lifted 50kgs (3x2) nearly 2 months since recovering well from surgery with full range of motion, and 11 days after chemo, and assessing myself as i go, feeling fine and not really even puffed out, and not even sore the next 2 days, to me that means that it is safe for ME to do this. if i felt not ok before, during or after doing a 50kg deadlift 10 days after chemo i would stop. why would i stop doing something that is manageable? for me manageable means something different than the next person who has had recovered from breast cancer surgery and 11 days out of the first chemo session. i trained nearly for around 9 months prior to diagnosis. 50kg deadlift would be a different story to a competitive powerlifter who can lift triple digits in kgs, and would be different again to someone who only did walking as exercise prior to diagnosis. why are other people not to be trusted to their own intuitions and experience in something they already know? do we need to tell someone how to live their life? not usually. so why tell someone how to go through their cancer journey? i have my surgeon and oncologist's approval and support for powerlifting before, during and after chemo, and i have the utter wonderful and strong support from the fitness community groups. why must i be told like an idiot that i am doing the wrong thing for my body? why tell me that i am not doing what i should be doing? with all the new realisations in the medical field that building stamina, strength and muscle can help to improve the lives of people with cancer even during treatment, and that these increases in fitness and muscle can trigger lots of previously unknown properties for the body to heal itself, generate more energy and stamina to better handle treatment, why is that exercise and strength training is so frowned upon by the standards of 30 years ago? maybe we do not have that much information on the subject but at least what we do know 100% for sure is that even if you don't have cancer, and you did no exercise, and no resistance training, that your body will function very very differently than someone who does regular cardiovascular as well as strength training. you add muscle bone and energy killing chemotherapy on top of someone who doesn't exercise for months at a time, and you get far greater levels fatigue, far greater loss of strength and more difficulty regaining strength after treatment (and guess what helps combat loss of bone density, muscle mass and loss of energy? -strength training). i know that before my diagnosis if i do not exercise for 2 weeks i loose strength and stamina, i feel more fatigued and my lupus will take over and i will be more prone to simply staying in bed. why do people like myself, other fitness pursuing women and athletes who had been diagnosed with breast cancer have to feel like we cannot be supported in a group like this and other groups that advocates exercise? i want to feel like people respect my decisions to do what i need and what i want with my life, especially because i feel ok and great after what i do in terms of exercise. and i want to say to other women here who do exercise/athletic pursues, PLEASE share what you do for exercise! because the community needs to know that if someone knows their body, got doctors approval, and does exercise that makes them feel great not just physically, but mentally and that empowers them, that they should be celebrated! that they should be allowed to say and share and be proud of what they did especially whist going through cancer! you need to share your experience until it is normalised in our society. i have been made to feel so angry and ashamed because i went back to the gym when i felt ok to, during MY cancer experience, and i do not want that for anyone else. i am excited to share this with you as a last note in a couple of links. thanks for those who read and are willing to understand. https://soundcloud.com/abcnsw/resistance-training-benefits-breast-cancer-survivors http://www.abc.net.au/catalyst/stories/4459555.htm <-- ABC catalyst documentary (chemo and exercise) http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0067579 <-- the exercise cancer killer cells research https://www.researchgate.net/profile/Julie_Gehl/publication/294870149_Voluntary_Running_Suppresses_Tumor_Growth_through_Epinephrine-_and_IL-6-Dependent_NK_Cell_Mobilization_and_Redistribution/links/56e954d408aecf036b315403.pdf <-- how killer cells work on tumors 2016 research564ViewsSign in to react to this post16CommentsBiocell implants by Allergan recalled
Europe has taken Biocell implants by Allergan off the Market. Other rough textured implants were withdrawn earlier in the year. Australia's TGA has yet to decide They are believed to cause a rare blood cancer. 3 Aussies are believed to have died from it576ViewsSign in to react to this post14Comments
Cancerversary 🍀
Hello lovely ladies. Today, on April Fools, I celebrate one year since my double mastectomy. Mixed feelings, for sure. It hasn’t been easy, that goes without say, especially with the whole surgeon saga happening. I’ve found out he left tissue behind in both breasts, in areas that were shown suspicious on the pre-surgery MRI. And he didn’t highlight those areas for pathology to check, so not sure what there even was there. He also refused to test further post surgery. Luckily my beautiful current surgeon is on top of it. However, I am still grateful that I had the surgery, as it rid me of those treacherous lumps in both of my breasts. I felt very happy after it, because my body knew most of the ‘evil’ was gone. So it’s definitely a positive thing, and I will celebrate in some small way. Emotionally, I’m so much better than what I was then, it’s hard to put in words. This forum had a lot to do with me getting better ♥️. It’s a special place 🕉. So did my current surgeon and her practice manager 💜💙. Anyway, to all the newbies, and all those struggling, it does get better. Hard to see that in the midst of despair, but nothing is permanent, so happiness and confidence will enter our lives again when we are ready to accept it and fight for it. Cheers to a cancer-free future 🤞🍀🥂369ViewsSign in to react to this post15CommentsNED and fantastic medical teams 💕
Today I am officially NED 😃🤩🥳🥰. On the 4 Dec, I finally had my left nipple removed, and today at my post op appointment results came back clear. After my nipple/skin sparing mastectomies in April, it was the last thing that needed removing as it had traces of DCIS. This surgery was supposed to be done in April, but long story short, I had problems with my first surgeon (anxiety and trust issues) and so I sought a second opinion, and consequently changed surgeons. Then, under my new surgeon’s care,I saw a fertility specialist, med onc, had bilateral radiation, and finally two weeks ago the nipple removal, which was done under local anaesthetic at my request. It was in a proper operating theatre, just that I was awake the whole time. And it was one of the most positive and interesting experiences I’ve had. There was no fear as I fully trust my new surgeon. She answered all my questions throughout, and we even had a good laugh about a mole I also had removed. Overall, it went remarkably well and I went home feeling really happy. Sometimes, I feel I have to pinch myself to make sure it wasn’t just a daydream, like I was having back in April and May when I was in my depression, not sleeping well, not eating well, and with heightened anxiety, all caused by my first surgeon in relation to this surgery. The way he wanted it done made no sense, it seemed unnecessarily invasive, I kept being told different things, and I got absolutely no information or support about my cancer in general. Meetings were rushed and there was no empathy or compassion. Also, he refused all other options of treatment I suggested, saying they were not possible. As soon as I saw my second surgeon, things changed. I immediately started sleeping well again, anxiety eased considerably and depression lifted completely. I was given loads of info, different treatment options and meetings were long, with detailed and very patient explanations. All my questions were answered thoroughly and there was genuine empathy and care. Polar opposites. Now, I no longer fear hospitals, and my trauma around surgery has eased considerably. Every time I have an appointment, I actually look forward to it and don’t stress and lose sleep. All my concerns are validated, and decisions respected. I get detailed answers as to why something needs to, or can’t be done. Also, all my suspicions about the things that didn’t make sense with first surgeon were proven right. I know that this is how it should always be, but unfortunately it’s not. Very definitely not. The treatment I get from my surgeon and her practice manager goes way above anything I could ever have hoped. Seeing them gives me a warm, fuzzy feeling, like the one you get when you hug your favourite teddy bear, or when you’re in front of a beautiful fireplace with a sizzling fire on a cold winter night. The feeling you get when you come ‘home’ 😊. It’s not something you can force, some people just have this gift naturally. I thank the universe that I am lucky enough to have found them (through this forum!) and today to be in this wonderful place emotionally and psychologically, and NED 🥰. And I thank myself that I listened to my intuition, as hard as it was at the time. I have since met many other specialists who are also brilliant. This ride has been difficult to say the least, but considering everything, I really can’t complain right now. I hope the universe continues to look out for me, and to keep beautiful people like these in my life (for prevention of further c, not treatment! 😆). I also wish the same to all you lovely ladies, also on this extremely unwanted ride. Good luck, don’t rush important decisions, and always listen to your body and intuition, as they know best! 🍀🥰♥️ Mon Xxx578ViewsSign in to react to this post23Comments
Good and bad news
It has been 3 years since I was diagnosed with Breast Cancer, this week I had my annual check up my mammogram, ultra sound and a bone scan are normal I have been on Tamoxifen as well minimal side effects Bad news 3 surgeons have advised me to I need a major spinal and knee operations with in 3 months, I am of the opinion the cure is worse then the problem maybe non surgical treatments are the way to go time will tell Regards Stork258ViewsSign in to react to this post3Comments
Mastectomy looming
This time next week I’ll be having my double mastectomy. For the first time since diagnosis I’m feeling so sad and swamped with gloom. The lumpectomy and the entire node removal left me mentally unscathed believing I’d be okay and able to cope with whatever was to come. I know I have no choice and to save my life these breasts that have turned on me have to begone. But .... it’s all so hard to comprehend. My glass half full look on life is now feeling decidedly shaky. Thankful for my fabulous family and friends though and today I randomly turned to a page in a daggy old mag at pathology quoting one of Winston Churchill’s sayings ... “If you’re going through hell... keep going.” I’ll try to keep that in mind.581ViewsSign in to react to this post14Comments
Is "Brian" the new Farnham??
So.......I thought I had given my lump "Brian" a beautiful farewell concert, complete with audience, drinks and a hearty "F...k Off Brian" back in March. At that stage, I was cruising through the Stage 1, grade 3 euphoria of "You got this Girl!" Doctor will do a Lumpectomy one morning, rip out a few nodes, dose of radiation and some pills just in case. Oh yeah, I was still scared, but I was being told - "we" got this!" "Brian" has left the building!!! So......the discovery of a 85mm lump of "Brian" and 4 positive nodes and 1 pissed off node, caused panic and it is now Mastectomy time. The family and I throw a "Fast and Furious" Movie Marathon as a Farewell to "Lefty". Receive a beautiful Love Note from my oldest daughter thanking "Lefty" for being an amazing breast and the Husband gets the final touch.. Rocked up for surgery on 6th May -it goes really well. Up and about that afternoon walking with the drip in my room, that I share with a 72 year old Lady who "Screams" in her sleep, calls out my name nonstop, refuses to eat and sneaks off for cigarette breaks. I wanted to go home just so i could actually sleep and rest!!! Anyway, 2 days after surgery, Dr. (I am God) Bolshy turns up with his entourage of Junior Registrars and says - "you can go home and by the way you are now Stage 3, Grade 3 and walks off." W.T.F. Did you just say? I had to chase this Bastard down the hallway and make him come back to my room!!!!!!!!!!!!! he refuses to tell me anymore other than you have jumped from Stage 1 to Stage 3 - the surgical team will tell you. I met up with the Surgical team last week and all hell breaks loose! "Brian" made a comeback!!! In fact "Brian" had been a busy little Lead Singer - shacking up with as many "Cell Groupies" as he could find the energy for and also shacked up with a Node (making 5 positive now and 1 annoyed) while spreading the love around! All he needed was 3 weeks of love action and he had created another 2mm aggressive growing "lump" near the original site where he was sliced/diced from the show and left his love juice in the form of 18mm of "Baby growing cancer cells" in my milk ducts. I am literally so shocked, I am unable to talk, comprehend or make any sense of what i was being told. What happened to "We got this??" Even though I am told "Brian is gone" and all is well - I am wondering if "Brian" is going to do a Farnsy and keep on making a comeback tour??? Anyway, IF Brian has left any love juice in my body or is thinking of making a 'Come Back" tour - He is in for a rude shock! I have a new band signed up to play in my body - SHE is called "Chemo and The Chemicals".....playing Centre Stage for the next 5 months in LOIS TOWN.....!! (lol) My new Motto: Find positivity in the little things and Use your words to defeat adversaries! Big Hugs Lois......who is not a Doctor's doormat.509ViewsSign in to react to this post12Comments
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