IBC lounge: roll call, support and just a good place to hang out
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Great article! We need more guys out there so people stop thinking this is just a woman's disease. I have always appreciated all you do to bring awareness.
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Well the Summit was fantastic. Titled Making a Difference, it was two days learning and sharing thoughts and experiences about such topics as Communicating With Impact, Survivorship, Regional Communities, and Effective Peer Support. Taking in the energy and dynamism of 200 awesome women delegates (and my mate Rob, seen below) was a real blast. These were smart, fun people as you can see from the photo. My guess is that it would be the equivalent of being with 200 BCO people; if you know what I mean. Since this was the first time guys had been invited, there was excellent media coverage that men get bc too, and both of us appeared in a national TV news segment saying the sort of stuff I say around here.
To all you going through treatment, I say hang in there. Rob is Stage IV, has been for nearly three years, and his resilience should be an inspiration for us all.
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I think it is so cool that you had this experience! Very proud of you friend!
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Thanks for the feedback from the Summit Traveltext and attached photos which give us an insight into the whole idea of patient advocacy and survivorship. I have taken great heart from reading about Rob nearly up to three years stage Iv.
Keep up the good work because you two are definitely Making a world of a Difference in the world of male bc.
Mini
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Thanks mini, I'm very mindful of us all at either Stage III or, like you and others, Stage IV. I'll ask Rob for a summary of his treatment to date and post it here.
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Here's an IBC Stage IV good news story.
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Chester's treatment history:
Originally diagnosed in 2010
Invasive ductal carcinoma in right nipple with three lymph nodes active.
Stage 2, Grade 3 ER+ HR+ HeR2-
Surgery was followed by chemotherapy (TAC) and radiotherapy.
After some four years of encouraging test results, I was diagnosed with secondary breast cancer in my lungs and five spots in my bones in 2014.
My treatment cycle since has consisted of two further chemotherapy cycles over a two year period (Abraxane and Triple M), and changed from Femara to Tamoxifen, and now to Aromasin following the recent identification of more bone mets (now 11 in total).
In addition I have been having monthly injections of XGEVA (Denosumab) that must be helping as I am experiencing no bone pain.
Something about what we are doing seems to be working as my latest CA15.3 marker was down to 7, and my most recent CT scan showed lung mets stable and no new mets in any other organ.
Diet: Vegan +seafood.
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Hi everyone... I am pleased to be part of your conversations. My MaleBC mate Traveltext has provided the link and shared some of my diagnosis and treatment already as a Stage 4 MBC survivor of nearly 3 years. When we both attended the recent BCNA Summit on the beautiful Sunshine Coast in Queensland I was very fortunate to be included in some sessions with "fellow metastatics" and the survivorship was very motivating....some of them 10+years. If anyone is interested I'm happy to share more details on my experiences to date.
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So glad you are here to share your experience. What a wonderful experience. Welcome
Val
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Welcome Chester, thanks for joining the IBC lounge and for sharing your story. BCO also has many very active Stage IV threads where you can connect with others and learn from their experiences.
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Welcome Chester! The testosterone levels just doubled in here! Joking aside, we are glad you are with us, and we are with you.
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Glad you're with us Chester! I am recently dx Stage IV and going on my second year in active treatment.
This thread is very good and supportive for IBCers.
Stage 4 there is a bone mets thread https://community.breastcancer.org/forum/8/topics/789492?page=554#idx_16603
lung mets thread https://community.breastcancer.org/forum/8/topics/780588?page=58#idx_1732
fitness thread (if interested) https://community.breastcancer.org/forum/8/topics/...
and main page of Stage IV topics as well. https://community.breastcancer.org/forum/8
I am probably missing some but wanted to provide these extra links I found helpful when I was looking around. We'll certainly look for you here too. Nice to meet you.
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Yep, Meadow, the testosterone's up and I'm popping extra tamoxifens to counter the all estrogen
Thanks for the links Mara, I was hoping someone who knows the Stage IV boards would lead Chester to the right places.
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Welcome Chester,
So pleased that you have found us. It's a small world indeed. I see that you are from Wollongong, my brother lives in Bulli! Thank you for sharing your diagnosis details. Traveltext, thanks for posting the good news stage IV story. It's always heartening to read them. I had a tough weekend mainly because I picked up a common cold at the same time as my chemo side effects were at their worst so I was aching in like every joint. Thankfully that has passed and I am feeling so much better.
March Equinox.... Roll on Spring
Mini x
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Mini, the good news story is Chester's story. March Equinox, roll on autumn.
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Thank you everyone for the warm welcome and the help provided by the posting of the links Mara
Mini it's great to know that part of your family is so close and enjoying all the beauty and serenity that this part of the world offers.
I will revert shortly and hopefully add some meaningful contribution to this group
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Welcome Chester! Traveltext, thanks for posting the photos.
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Hi Chester and welcome (though I'm sure this club is one, I'm sure, that you never anticipated joining.) This is Barry, whom you've probably heard of through traveltext. I certainly have heard of you and am so glad you've been successfully fighting this beast for so long. You've certainly had a go of it and are an inspirational model. I'm now in my 5th week (out of 8) of rads, following a right mastectomy and lymph chain removal May and June 2016 respectively. My diagnosis was IDC, (not the really the required diagnosis for this page, but it's where you posted) involving 2 tumors, and 2 nodes (one of which had broken open, supposedly releasing the little beasties into surrounding tissue.) Still it was "just" stage II (late) and with 6 rounds of chemo down, I'm now I'm 2/3 of my way to tamoxifen-ville.
I found this site (MBC) almost as soon as I was diagnosed and thus found much needed support, if only to learn that I am not a freak nor am I alone. I clicked with travelext and I'm so lucky to have met him. Now I'm glad to have connected with his BC mate. Looks like you both certainly held your own in that 198:2 (absolutely dead-on) ratio and am glad you are getting the word out in your neck of the woods that men have breasts too. The pix look great and it sounds like you accomplished a lot. Send a PC if you feel so inclined.
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Holy moly, the testosterone just tripled! Welcome to my pal Fiddleman.
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Welcome fiddleman! Love having the guys on board. Even though the first part of the thread says IBC, the other 2/3 says support, and good place to hang out.....you are more than welcome and we can all learn from each other. Besides, Traveltext has had all the women for so long....he probably needs the moral support. Lol.
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Yes, I've been so lucky to be a part of BCO and particularly the women on this thread. I really put my recovery down to the help and fellowship of the this community. Meadow, not sure I need the moral support, and certainly not the competition from the guys, but I have to say that coming up three years as virtually the only man with the disease posting on BCO has been sometimes lonely, but mostly just a great privilege.
You can see the Summit TV interview which includes Rob and me HERE.
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Welcome fiddleman...so lovely to have another male to communicate with.
Since the BCNA Summit that traveltext shared in an earlier post I feel reinvigorated to push the advocacy for MaleBC. It is so easy for our Breast Cancer Government agencies and related support networks to forget that non-gendered language and imagery is crucial to improving community education and awareness that Breast Cancer has no gender. I know many may think it pedantic but at the Summit a video titled "Influencing best practice in breast cancer" was shown on behalf of Cancer Australia, wherein the CEO of Cancer Australia referred only to women with breast cancer. How can this be best practice? It is only as a result of challenging these stereotypes (which I have done by the way) that I feel I can improve the lives and outcomes for those that will follow in my footsteps.
It is wonderful that so many within this online community are so understanding and supportive and I'm sure that together in our own way we can make a difference
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I just want to say welcome and a big thanks to the gents for all your efforts to raise awareness. Perhaps this isn't really a fair comparison but you all are the 1-2% of BC patients who are male and we here in the IBC lounge are the 2% or so of BC patients who have inflammatory so here we all are - anomalies, rarities, outliers etc. When I was diagnosed with IBC in 2015, it was stage IV from the get-go, but I had had a stage II BC on my other side 15 years earlier. I felt a certain amount of shame that despite my history, I was ignorant of the symptoms of Inflammatory BC and even its existence, thus when I embarked on the inevitable effort to google-diagnose myself, I discounted that I had IBC because it was so "rare". Had every bit of info I read not emphasized the rarity and instead focused more on awareness raising, I may have run rather than walked to my doctor - so to speak - and I may not have yet been stage IV. It's in that way that I imagine there are some parallels between male BC and IBC. There must be men who are worried but think, "nah, too rare" or even "not possible" and delay seeking medical care. Well, anyway, glad to have you here. Keep on keeping on, everyone!
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Chester, that's a typical story that you find with the pink charities. You should also post it on the Male Breast Cancer thread HERE.
Margarita, That's a good comparison as far as percentages go, and as far as awareness of both these diseases among the general public and within the medical profession. It took me three visits to my general physician, over three months, before I got a referral for a scan. The breast surgeon took one look at my typical IBC chest and sent straight to the MO to begin chemo. Desperate for info, It was Google that brought me to his site and the specific thread on IBC at the time, the one titled "This ain't Facebook..." started by Bon. Some people here are still regulars on the new thread started by PurpleMinion. Sadly, she passed after just one year of treatment.
Anyway, all the best with your treatment. What regimens are you on?
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Agree with traveltext that Margarita's is a great comparison.
The more information we all have with initial and subsequent diagnoses the better prepared we will be, and hopefully also able to make decisions that provide for better outcomes. Education and awareness is vital across the community
In my case a) I wasn't aware initially that Males can get breast cancer and was misdiagnosed by my Doctor
And then b) When I was suffering from shortness of breath 4 years later I had no idea that breast cancer typically metastises into lungs and bones.
So here I now find myself some 6.5 years after initial diagnosis with Metastatic breast cancer in lungs and bones, but so much the wiser and more knowledgeable as a result of a thirst for knowledge and shared experiences like this wonderful community provides.
Also the thirst for knowledge helped me make some important lifestyle decisions around reducing stress, changing my diet, and creating more time for exercise. I recognise my medical team are an absolutely vital part of the puzzle but I also believe that I possess one of my most powerful drugs between my ears. Making balanced decisions based on sound information and good data now enables me to feel as though I am helping control of my own destiny and that in itselfis empowering.
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For sure. And, I'd add, at the end of the day we're all responsible for our own health. We need to be forever advocating for ourselves with the medical professionals, checking treatment regimens, keeping abreast of new developments in treatments, and then looking after our mental and physical wellbeing. What I like about the people here is that they understand this and generously share their experiences.
I've posted this before, but the excellent free app put out by The IBC Network iFoundation s worth downloading.
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Thank you to TravelText and all the lads for your activities and your posts. This disease truly has no discrimination where it strikes. Thank you everyone for posting your experiences and information. Knowledge is how we will all move towards beating this darn disease.
I'm am currently being treated for a recurrence (with Ibrance and Anastozole) for which I feel is not the IBC I had originally as its now strongly ER+ and not the original Triple -ve. Though you never know whether it has morphed or on cancer had just decided to hop to my liver in a different form. I am doing really well and follow this thread with love as I feel in my heart I am still an IBC gal!
I am so happy there are new treatments developing for all sorts of BC. Those with immunotherapy for Triple -ve are good to hear.
I wish you all happy times, successful treatments and comfortable recoveries.
Sarah
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Traveltext, I'm currently on Kadcyla with Zometa every 3 months. I started with Taxol/HP. I had a great response and was then on just the HP but due to bone progression and reduced heart function was moved onto Kadcyla, then progression again so on to Abraxane/HP. Another great response and a second opinion from radiology that the recent progression (believed to be in lung) had actually just inflammation resulting from radiation. So, back to Kadcyla and most recent scan showed no metabolic activity. I've tried to put this in my profile but don't seem to have the patience to make it stick. Aside from a little neuropathy, some fatigue and the occasional Zometa aches and pains, I'm holding up pretty well.0 -
hello ladies ..I have always been a breast cancer awearness sponsor an just January 5 of this year I was dinosed still doing test to see what grade an ect ..some of its Greek to me ..my emotions are up in the air ..angry at the world ..crying and just going out of my mind..I recently have established a new relationship with a sweet and adorable gentle man .. I have 2 beautiful daughters an 3 adorable grand babies..it's hard for me to tell them my updates on things because I know it breaking them in 2 ..two know that thir mother has this terrible thing ..my parents a worried because my maternal grandmother just past with breast cancer Dec of last year 18 days after her death I was dinosed..so as you can see ..I'm scared to no end ..like I said before going through testing and ect..but I do know I have 3 mass spots on the left breast an 4 on the right ..I'm 39 an just not ready to face this horrible things...I here for just a friend or maybe to understand all this crazy horrible stuff ..thanks for reading ☺
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Thanks Margarita, that's a very illuminating and informative post. Fancy the suspected progression being inflammation. You really do need to double check every step with these treatments. Back to the Kadcyla and now with no metabolic activity are very positive developments. Congrats.
Sparkles, welcome to this thread. Your varied emotions at this early stage are natural, so you need not feel this to be unusual. When you have your full diagnosis, you might like to fill in your profile with the details so people here can give advice and/or make suggestions based on their similar experiences.
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