Deciding which forum to post in - too many choices!
Comments
-
I read through the "RESPECTING the STAGE threads **RANT**" discussion, and I've been thinking about it a lot... I understand that women with Stage XYZ feel disrespected when women with Stage ABC say "I know how you feel" because women with Stage ABC can't know how women with Stage XYZ feel and vice versa.
But I've been thinking about this issue in an even broader sense - we all have multiple identities, in addition to what stage our cancer is. We differ in terms of age, sexual orientation, race, ethnicity, religion, general health, relationship status, where we fall on the spectrum of conventional vs. alternative/natural medicine, etc., etc. Is stage really the biggest divider? What about the fact that I started a thread in the lesbian forum, and only straight women responded with hetero anecdotes?
This forum has SO MANY sub-folders to address all of these differences that it gets confusing - to me, at least! - when I try and figure out where to post. I am a 31-year-old single, childless, alternative-minded, lesbian pagan with stage 1 mucinous cancer and DCIS. So where do I post?? There is no ONE forum which applies to me and encompasses all that I am, and I'm sure this is true of most of us. Deciding where to post becomes a matter of determining which aspect of my identity feels most salient in relation to my breast cancer journey, and that's not easy - and it's not always/automatically the stage of my cancer that determines where I post. If I post in the Stage I forum to "be understood" by my Stage 1 sisters, they're not going to necessarily understand/relate to my lesbianism, and if I post in the lesbian forum, they're not going to necessarily understand/relate to my stage, and on and on.
I usually cannot separate out all of the different parts of me! A brief example, of the issues I'm dealing with right now:
I'm trying to decide between radiation and mastectomy [so I'm posting in the "Help Me Get Through Treatment" forum]. I'm skeptical/scared of radiation because I've always been into alternative health methods and am wary of conventional treatments [so I should be posting this in the alternative/natural methods forum?], and I'm tempted to get a mastectomy instead but my surgeon and friends/family members are worried that I'd regret losing my breasts when I'm SO YOUNG and could be living breastless for another 50 years [so do I post in the young women's forum?]. I'm also tempted to get a mastectomy instead of radiation because the only local radiation oncologist is male and I'm extremely uncomfortable having men touch my breasts - no man ever HAD, until my biopsy, and if one more man touches my breasts I might freak out and have my breasts removed to prevent that from ever happening again [so should I be posting in the anxiety/stress forum?]. And on the flip side, my surgeon's so great I actually have a crush on her, and getting a mastectomy instead of radiation would mean more time with HER and less time with HIM [so do I post this in the lesbian forum?]. I know that my reasons for wanting a mastectomy are not great; they're based on emotions and fears and not what's best for my physical health, so I've been researching my options more as well as meditating and asking Spirit for guidance [so should I be posting in the spiritual inspiration forum?].
Or do I post entirely in the Stage 1 forum, because my cancer's Stage 1 and that trumps all the other "categories" I fall under? I have mucinous cancer but that's so rare there's no forum for it, so do I post in the DCIS forum even though I have I had both DCIS AND invasive cancer?
There isn't even an appropriate forum to post THIS post in. Does anyone else get confused with all of the different forums?? How do YOU decide where to post? -
Dear Raili - Unfortunately, I don't have the answer as far as where you should post (and I too am often confused as to where I should post my questions, etc.) But I wanted to respond to your issue.
I think once you come to your own decision, you know when it is the right one when you are most at peace with yourself. I was 40 when diagnosed (I am a heterosexual female married with 2 children). My breast surgeon wanted me to have a lumpectomy since I was young and my cancer was Stage 1. I did not want to have to go through radiation, so I chose to have a mastectomy. At the time, thinking about reconstruction (on-top of dealing with the cancer diagnosis) was just too much. So I decided to have a mastectomy without reconstruction and was happy and at peace with my decision. Now two years out from my diagnosis, I have chosen to have my healthy breast removed and I am having reconstruction done to both breasts (one immediate reconstruction and one delayed reconstruction both with tissue expanders). When I first met with the plastic surgeons back in 2008 I did a lot of crying so I knew it was not for me. Now two years later, deciding to have reconstruction was the right thing for me.
Basically, no one can tell you what you should do. If you are crying more when thinking about one alternative over another or scared or frightened more when thinking about one over the other, then it is not the right choice for you. Once you make the right decision for yourself, you will not it in your heart and soul and be a peace with your decision. Believe in yourself and give yourself time to make the decision. You don't have to come to a decision over night.
Good luck with your decision and good luck navigating the forums on which to post.
Karen
-
Raili - I never was concerned about where I posted before the now infamous RANT thread. As I read through that thread (shame on me lurking, but come on, you title something like that, it's like a train wreck, you gotta' look!)...
Anyway, I digress, as I read through that thread I found myself getting very insulted and defensive about some of the things that were said. I then starting wondering... where have I posted in the past, and if I might have said something that may have come across as insensitive or hurtful. When I first joined these boards all these different groups were not clear to me, I would just see a topic of interest and read, maybe I'd respond if I felt I had anything to say that might be of use to the poster or just words of encouragement.
I was disgusted by that thread and still am and all I can say is this... it takes all kinds to make the world go round. I will post where and when I want and provided it doesn't violate the guidelines of breastcancer.org there should be no problem with that. I have never posted anything in response to another member here with anything other then good intentions and if I've ever said anything that offended someone I would hope they know that was never my intent. Up until the RANT thread I never would have imagined that women battling this disease together could ever be so nasty and talk so badly to/about one another, or to assume the worst about someone's post on a thread "not of their stage". You know, if people are saying stuff on stage IV that the stage IV ladies don't find comforting, there was certainly a better way to address that then in the tone in which it was done. Something as simple as hey ladies, saying "I'm praying for a cure" on a stage IV thread after someone has passed is not comforting, I know it seems like it would be but it's sort of a jab to their families since they didn't make it to see a cure. Shoot it doesn't take any more energy to say something with kindness then with some big nasty melodramatic rant.
My eyes have been opened and I now know a couple of members to just steer clear of. Sadly, that is the nature of public message boards. I somehow thought this one would be different but I was wrong. I do have a whole new feeling about breastcancer.org, it's not quite the safe refuge I originally throught it to be, but I still find it useful and I find my sisters on the January Chemo thread to be the kindest and sweetest ladies so I post there for the most part.
I wish you luck in finding you "place" here and don't you worry about where you post, MOST of the ladies here seem quite kind and caring. Sorry for going off on my own little rant here on your thread, but I appreciate you addressing this, I apparently had all this pent up frustration about that other thread, appreciate you letting me get it out!
-
I post where it makes sense to me. I'm not offended if people who don't have my exact cancer say they understand. In the overall scheme of things, they DO understand. Hurt is hurt. Fear is fear. Love is love. And so on. Others may not agree with me but that's the way I've always felt. We divide too much, sometimes, instead of finding the common threads. I respect (and applaud) differences but I find compassion when I find the commonalities.
If I'm not getting a lot of replies to a post sometimes I'll dig around and post elsewhere (or sometimes someone kindly suggests a better forum). That works, too.
And no, I'm not like you in a lot of ways, but I know how hard it can be to chose a treatment option. It sounds like you're doing the right things -- research, meditation, etc. Your answer will come to you. Trust your "gut" or soul or whatever you chose to call it. I had to buck what others thought was best for me a couple of times but it was right for ME and it all worked out... and I have no regrets. Ultimately, no one else has the answers for me except me.
Hang in there. Get support where ever you can. And of all the things you have to worry about right now, chosing the "right" forum to post in is probably one that you can let go of.
Take good and gentle care of yourself. Sending a warm hug...
-
Karen, thanks for the encouragement and support!
Friscosmom, thanks for all your thoughts... I'm glad I was able to give you the opportunity to get your rant out!!
I agree with you that basic kindness and respect is needed while posting... and it should not be so hard! I'm glad you've found such support from the Jan Chemo thread! Random side note...I was dx'd 4 days after you! -
Wonderful posts ladies! Where were you all when I needed you so badly on the "RANT" thread! You've all said it so much better than I did when my back was up...
We DO have the right to post anywhere, but sadly, we have to be prepared to take the heat of someone who thinks we don't belong. Like I said, a "sandbox mentality".
-
Raili - I've posted where it makes sense to me and have found wonderful women on all of them. For example, my chemo was Taxotere/Cytoxan and I post on a specific thread with other ladies going through the same treatment. I also post on December 2009 chemo, as well as a thread for Canadians. I agree, we should all feel comfortable posting anywhere so long as we're not saying anything offensive. I'm triple negative and sometimes post in that area, too. All in all, this is a very welcoming site from my experience and you should feel free to post where you think/feel it makes sense to you. I wish you all the best through your BC journey.
Sherri
-
Hi Raili ...
Since you posted in "Help Me Get Through Treatment," I'm comfortable in responding. :-)
A couple of things stood out for me. Firstly, I don't think it's uncommon to develop a crush on our doctor, whether we're gay or not. I believe this happens in all kinds of medical settings for various reasons. I'm not gay and I was very uncomfortable having a male tech doing all the set-up and scans for my radiation. I was uncomfortable period having so many people involved in touching, filming and measuring my boobs! I'm quite comfortable naked at home with DH, but not in a clinical setting. Geez .. I felt like half my small town had a good view of my boobs! My rads techs were women .. thank god. But, when the machine broke down, the fix-it person was a guy from another town. For the love of pete .. now a man from another town got to look at my boobs.
There is most definately a loss of dignity involved in breast cancer and its treatment.
As for choosing between mastectomy and lumpectomy and radition, I chose lumpectomy and rads. My cancer was on the left side. I did not want to lose my breast. I had the option to save it. I wanted to keep it for personal/sexual reasons. I'm attached to it/them. I was grateful I had the option for lumpectomy and rads. Radiation was not cake walk. I hated it, but survived and you absolutely cannot tell the difference between the two breasts.
About posting in the "right" or "wrong" forums .. as a newbie, I blundered my way through a few forums ... no biggie .. most of us have friends in all the forums. I read the rants cause they catch my eye in the active topics column.
Post wherever the hell you want to.
Bren
-
I came here soon after I was dx'ed. Lurked for about a month before I decided to start posting. Initially I had two major issues/hopes that I thought I could address.
The first one was to find someone who had the same dx and was going through the same treatment. My tx is neoadjuvant chemo with 12 weekly of taxol infusions and daily sutent followed by 15 weekly Adriamycin infusions and daily cytoxan. Surely on this large of a board I would find someone who was on the trial or maybe didn't do the sutent but did the same T - AC protocol. Nope.
The second one was the terrible fear that I was going through. My dx was identical to my sister's and she died from BC. But I found out early that this goes into a territory that is best not discussed on a public board. Especially with all the newbies and the fear that they are going through. I decided my respecting their fears was more important than my addressing my specific need. Struck out there also. Opted to work this one out by discussing with people face to face who I felt could understand.
I have not yet found any one woman, let alone forum, that I felt was a complete match for my personal beliefs, my dx, my preference for analytical thinking. I have spent my career working with mostly with men and engineers to-boot. Ironically, I find talking with some of them more comforting than many of the topics I read on these boards.
So I guess I'm saying that this board is just another form of support. But I don't believe it is a complete answer when it comes to support. We, as humans, are way to complicated and we need to find the support appropriate for who we are as individuals.
I never felt like I fit in the August or Sept chemo groups. But I did find that I got comfort from reading many of the posts in the Chemotherapy forum since that is where I've been for the last 6 months. As I move on to surgery I'll start reading in that forum. Same with RADs when I get closer to that phase.
And I find a lot (and I do mean a lot!) of posts that I disagree with or feel they just don't apply to me. But I'm OK with that. I just move on. I love diversity. It reminds me that my way of thinking is just one of many ways and sometimes it causes me to re-assess how I feel about something. Just because I'm 51 means I figured out all the answers. I need to keep listening, learning and re-confirming how I feel about life.
Bottom line is that the Stage 3 forum is where I prefer. Why? Because it gives me hope for my tx and for my cancer prognosis. That's why I feel I can really get from this board. But it's taken months for me to feel more positive since I never found the "fit" that I was originally looking for.
I agree with all the comments in NatureGrrl's post so I'll defer to what she wrote.
I hope you can find the places that are comforting to you and get the support you need -- no matter if it's BreastCancer.Org or elsewhere.
-
One thing I learned reading through boards (and I haven't read it all) is that we are all different and our journeys are different. I am VERY private and I have had to be undressed in front of so many people since my diagnosis after awhile it seems to become numb. As my husband looked over my shoulder as I did research on mx vs lump and reconst options he was shocked about how many "boobs and foobs" are posted out there. It is a help in making decisions for us but I was not comfortable with my "mug shot" at my PS office before my mx.
I read posts many months before loggin in to put in my opinions and ideas. I find myself going all over to place to see if someone needs encouragement to get to where I was and also to learn where I may be going. Hang in there and don't be afraid to post your feelings. They are YOURS!
-
Here's what I do; if there is a post where I feel like I can give some help/advice (or ask a question of my own) because of my own personal experience (lumpectomy, chemo, radiation, Al's), then I add something. (Unless I see that the people on that thread don't want input other than people EXACTLY like them, then I get out of there quickly!) There are a lot of threads that are not specific to any stage/treatment/age etc. I have met some great woman on the fun & games & fitness threads, and since I 'know' them, I feel comfortable reading and responding to their posts no matter what stage or other factors are involved. Check different threads out. You will find the ones that feel like 'home' to you, but when you need advise for a specific concern outside that 'home', don't be afraid to go to that area and ask. Most people are really nice and willing to share their experiences and knowledge. Good Luck! Ruth
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team