Has this community positively impacte... - SHARE Metastatic ...
Has this community positively impacted your breast cancer journey? If yes, please describe how in the replies below
AnnaHUHealthUnlocked50 VotersPlease select one:
Huge impact on my own journey. I have gathered information and feel I am much better balanced with my emotions because of the knowledge. An absolute Godsend for those of us on the road with MBC.
Absolutely a positive impact on my breast cancer journey. To read about other people successfully managing their MBC and sharing their experiences, both good and bad, provided me with hope. I learn so much on this forum.
The group comprises people who are walking a similar path, facing the same extreme challenges that come with this diagnosis. This group has been transformative. I experience a sense of belonging and understanding here and discover a wealth of shared knowledge, empathy, and compassion.
Each member willingly shares their personal stories, victories, setbacks, and coping mechanisms. It is a place where we can be vulnerable without fear of judgment, and I realize that I am not alone in my struggles.
Through listening to others' experiences, I often gain a renewed sense of hope, resilience, and determination to face my diagnosis head-on.
Beyond the emotional support, the practical advice and resources shared within the group are priceless. Discussions about treatment options, symptom management, and navigating the healthcare system helps me make informed decisions about my care.
Very positive impact. I get information from people on this site who have a wealth of knowledge, and are happy to share it and their experiences. I don't feel so alone. I can't thank this site enough.
Very encouraging space.
Very positive impact. There is no substitute for hearing people’s own experiences, recommendations and advice. Having MBC can be a very lonely experience, but being part of this community makes me feel that I am among friends who support me when I need it and who I can support in return. I have often felt reassured, inspired and hopeful after reading posts here andthis makes so much difference.
It is truly a blessing to get info and experiences from those going through the same thing as me. Thanks for being there and it is also a great place to vent, because you know those reading will understand! It is an outlet I cannot imagine doing without. I would feel so alone with this. I have met, and continue to meet, the most beautiful people on here! God bless you and thanks again!
one of the immediate effects of a diagnosis is the sense of isolation, the feeling that you are different and can’t participate in things that others can. The community here showed me that there is an army of women and men who have this same burden yet are still thriving . I ah e found good advice, shared good advice, found solutions, grieved over losses and celebrated happy outcomes. Most importantly, conversing with women around the world has been a true blessing. I do not feel alone.
Agree seeing people with MBC from around the world come here to support each other has been truly breathtaking.
Being able to read posts by others on this MBC journey and to get information, support and guidance has been awesome for me. I don't have anyone personally in my life right now who is dealing with MBC, so to have a whole network of people on here to share experiences, fears, and successes with has helped me handle the ups and downs of this disease. Thank you for putting this site together for us.
This group quickly became a lifeline for me full of support, encouragement and information. So many women on here whom I admire for the spirit and determination they exhibit while dealing with this demon called MBC. I still miss the spirits of those who have moved on, either voluntarily or not.
I have gained so much information and also a place where people understand how I feel is so refreshing.
Yes. The way the topics are so well organized, you can deep dive into any topic you see that is of interest without slogging through extraneous material. People are detailed and honest when the post. Individual, anecdotal information like this is so important when fighting this disease!
It gave me a good sense of community.
yes! The international component is simply wonderful. I have learned an immeasurable amount. It’s a tremendous support to me I have also made friends in “real life” from the platform.
A wealth of further information from real patients
Yes!!! This community has helped me tremendously in knowing the different paths ahead. My mother was diagnosed with de novo MBC Feb 2023 and I’ve had to educate myself on the disease and treatments. I’m so thankful for all the women on here that share their experiences!!!!
The community support is critical to me, my go to everyday
I didn't join until years into my MBC journey, and the conferences I've attended, the regional monthly face to face support group (now non-existent as new referral source left and everyone else died). and another on-line group that ended, were all more helpful. This group doesn't include as many long timers as I've met from those other sources and I stay here mostly to support and educate others. I benefit alot from that, esp now as I'm staying home exceptfor medical appts.
it gives me connection to others with my issues
Reading everyone's shared experiences; the good, the challenging, the concerns, the laughter, the facts, the research and everyone's sincere dedication to support this wonderful community. Each post is filled with love and support, that inspires an awareness we all will live long lives.
I have observed a willingness from each inquiring post to trust the shared personal feedback that empowers each of us to embrace our future thru a knowing; we are blazing a path for generations that will benefit from each individual journey.
This community has made a positive impact on me as very few people in my life can relate or help me navigate the MBC reality. This community understands and helps each other navigate treatments, side effects and I get more info on here than from my oncologist at times .
makes me feel less alone.
I was diagnosed with MBC 4 years ago and found this site soon after in my journey. This is a good forum to connect with others going through this process and discuss the physical, mental and emotional aspects of this disease.
Mostly by giving info -- treatment options, remedies for side effects, and links to research. It is both good and bad, in that some people have gone many years with effective treatments, but also we have lost people. I have made friends with a couple of people, one of whom I correspond with almost daily. It is helpful to have someone with whom to share my status and feelings. We both dislike the term "journey" and are skeptical of alternative med.
I have made friends with people in a similar position and I can ask questions about things I’m unsure of
Yes, this community has had a huge impact on my MBC journey. From reading other member's experiences I have gained hope and knowledge. Thank you!
I am so grateful for the help and support I have gained from this community , I feel I can say how I feel, and be myself about my ups and downs with this illness and I have had so much positive feedback , when I was first diagnosed with MBC , I felt lost and alone , now I am so lucky to be part of this wonderful group, and such strong people with some amazing positive stories of hope , It makes feel a sense of belonging and helps me get through my days , I have learned that , my life is not as bad as I first thought it was going to be ,
I learn things to ask oncologist from women with different oncologist. I learn all the meds that are out there.
I have read all the posts and fully agree with the positive impact on so many lives. Be strong. Reenie
This site has been a godsend. Wonderful women help me cope with mbc. Couldn't deal with everything without them.
With specific informstion regarding specific drugs, tesearch articles dhared and emotional support.
This is my 3rd time around with BC (1998 & 2012) but first time possible MBC. Its great to have many more options and less damaging ones than 20+ yrs ago. Lots of positive feedback and tips on how to deal with negative effects. Forums like this were not around when I first got diagnosed so had to go it alone on research and decisions. Not always popular with the oncologist - but knowledge is power!!!
Hi
My Mom is on this journey and it’s comforting to reach out and connect with so many wonderful people going through similar feelings about their diagnosis. There is a strong sense of support, caring, knowledge and compassion shared with one another. This positivity and hope lifts us all up and makes us all stronger on this journey.
I'm a long timer with MBC, and I joined this group when another on-line group was closed down. That group just had a warmer feel to it, hard to explain. Sorry that I just automatically compared this group to it. That group was smaller yet more of us posted very often and group members would arrange to meet face to face at various BC and MBC conferences. I miss that alot!
there is head knowledge and there is heart knowledge.
We are walking this path in our own way but together with heart because we intimately share the same reality.
The encouragement, applied knowledge, safe space is invaluable for coping and thriving with MBC.
I have become more than I ever thought i was capable of and I owe so many women on this site past and present so much gratitude. Thank you for listening, thank you for sharing with honesty and caring, thank you for being part of this nasty business in the dark spaces.
We are stronger together 💜
This is the most important forum that I belong to.
This is the only place where I can relate to people with ER+ PR+ HER2- cancer. I have endometrial cancer, and am on Ibrance and anastrozole. The research for this type of cancer in endometrial cancer is years behind breast cancer and metastatic breast cancer. When you go to webinars from the conventions like SGO, they call the hormonal cancer research "an area of opportunity", yet the research is already there in breast cancer and mbc. I have many of the same mutations as hormonal breast cancers. The current research in endometrial cancer is focused on immunotherapy. Since my cancer is pmmr (mss stable) and tumor mutational burden low, it is not the best treatment for me.
The only reason that I am on this treatment plan is because my doctor was one of the original researchers in breast cancer for the Ibrance clinical trials before he became a gyn hemo onc. Medicine is so stratified today that gyn oncs don't even give breast exams or referrals for mammograms. My own gyn onc told me that I know more than her about hormonal cancers. I am at the point now that I think I need to attend the breast cancer conferences.
While I do understand there are differences in the body parts, targeted cancer therapy is supposed be driven by mutations. The research needs to reflect that regardless of body part or as an additional variable. I'm worried that I won't have access to the meds the bc patients get because they aren't approved for ec.
So thank you for allowing me to join this forum. It is has been extremely helpful to me.
I love the support and overall positivity. Wonderful group
