I know I cant be the only lesbian out here?
Comments
-
I'm in!
0 -
Glad to see you in this discussion group.
0 -
Just checking in. Had two appointments today and pretty sure I'll be making a final treatment decision on Thursday when I meet BS again. Some basics from today. I know I'm going to have to be making some very real decisions here coming up. Here's the basic's from today.
Met with radiology and genetics today.
First appointment was ok. Kind of got mixed messages. I really liked the resident physician I met with. We went over the concerns of radiation and the complications that can arise with NF. There is a possibility of the neurofibroma's turning cancerous with radiation. When I posed the question of "what would you recommend" knowing my concerns of the radiation and then the fact that repeat mammograms would have to be done every 6months to a year. He replied with if I was not attached to my breast and was comfortable with the mastectomy, he'd would recommend that.
When the attending doc came in for the end of the appointment and for the breast exam, he said that he would be comfortable with giving radiation and there's only a slight % of the chance of the neurofibroma's turning cancerous. He did ask/elude to a bilateral mastectomy if I was uncomfortable with the idea of having to do the mammograms so often.
Still have mixed feelings on this. Right now I'm more concerned with the effected breast, but it has been in the back of my mind "what if" with the other. Something I will have to discuss with BS on Thursday when we meet again.
Genectics was fairly basic. I had actually met with her 6 years ago, and she still had my family history ect. Added a few things and talked about genetic testing. Decided to go with a 33 gene test that will hopefully be covered by insurance. Blood was given today. If insurance does not cover I can pay 1500 out of pocket and they will continue with all tests, otherwise I'll only owe $100 out of pocket.
I'll be interested on any final input from my surgeon. If anyone has any added thoughts, please share.
Brandi
0 -
Sensiivehrt: You do indeed have a lot to consider. I do not want to be flip about when male docs provide info on if "one is attached to her breasts" when it is like asking if they are attached to their testicles. Having said that, I was not as they say, attached to my breasts and too readily decided on mastectomies as I had cancer in both breasts and did not want to undergo the mammos the mri's and possible repeated mri biopsies. One question I did not ask because I thought, based on reviewing so many web sites; that all mastectomy incisions were horizontal. Mine are on the diagonal and go from almost midline to under each arm pit where sentinel nodes were removed. You probably already have that information from your surgeon, but if not you might consider asking for that information.
Again, I know you are doing so much upstream thinking about this so that you can make the best decision possible for you at this moment. You are in my thoughts as you process so much between now and Thursday and then until you have surgery. I'm so sorry you have to be in this group, but know you will get the support you need. I have found everyone to be very helpful in responding to my posts as well as the info I get from what other people post. I'll be watching for your progress reports.
0 -
Thanks Magic,
I've added the question about mastectomy incision to my list
. I'm not "attached" to my breast per say either (I do have to say the way the doc posed the statement/question was relevant to our conversation and not offensive), and I just want to make the right decision. Radiation really isn't a choice in my opinion, even though the one doctor says he'd do it. Just don't want to chance it. I'll be very interested in what my BS thoughts are on the unaffected breast. I'm very torn, part of me says with my added risk (there is an increase chance of BC with NF) should I consider the bilateral. Lots to think about in the next two days. Going to try and get some shut eye for now. Thanks for your input.0 -
sensitive, a lot of it also depends on whether you'll have chemo or want recon. For example, if recon is in your future, I'd say do a skin-sparing bilateral; those incisions will likely be vertical, to accommodate implants or autologous tissue.
If not, and if you're okay with not having breasts, make absolutely certain that your surgeon understands that you want to be completely flat, on one or both sides.
Mastectomy is the only way to avoid radiation, it seems. Given your pathology, it's not likely that you'd be a candidate for radiation after mastectomy, whereas with lumpectomy it's standard.
Here's my experience, which I share knowing that we're all different: I had a unilateral mastectomy four days after being diagnosed (I had a super aggressive tumor). Then, though, as time went on, I grew weary of being asymmetrical and wearing a prosthesis. So I went back and had the other removed, along with the extra skin on the original side. I'm still getting used to being flat and fabulous, but I have no regrets. No more mammograms, no more bras, no more breasts.
I got lucky and had a (male) surgeon who gets it.
At the end of the day, think about whether symmetry matters, and whether you want to have mammograms on a breast that remains. But also remember that you can change your mind: any insurance company that covers a uni is required by law to cover any procedure that makes you symmetrical, whether that's a second mastectomy or reconstruction.
0 -
And until you have surgery and determine the true extent of the cancer, mastectomy isn't a guarantee of avoiding radiation.
0 -
ksusan, I'm living proof of that (BMX and chest-wall rads). But it's unusual. And lumpectomy GUARANTEES radiation, you know?
Sorry if I was unclear about any of that.
0 -
Kate/ksusan- I've already decided against reconstruction, whether I go for the single or bilateral mastectomy. Radiologist said with mastectomy he's pretty confident that I would not have to do radiation, due to current info on hand. But also said there is always that very small/slim chance that it could be a possibility, more so if when they went in something totally didn't show (which I understand could always be a possibility. I feel comfortable going into surgery on that. Just trying to focus and decide on the right side now. Meeting with the surgeon again tomorrow. Hopefully I'll have more clarity in my mind and in my heart.
Thanks again for you input and thoughts.
0 -
A positive note is likely to get you radiation even with a mastectomy.
0 -
Cross posting:
Hi ladies,
Just checking in. I'm scheduled for surgery on May 6th. Taking the weekend and part of next week to make a decision weather I'm going to have one or both breast removed. I was still undecided when I met with BS today, and she told me to think it over and make the best decision for me. She did say she normally wouldn't suggest taking a "healthy" breast, but with my NF, and the cancers I have in my family, she could see where I would consider a bilateral. Still don't know what decision is best for me. Checking out the other threads, making pro can con list, and trying to figure it out.
In the meantime, getting house and yard in order and keeping myself busy. Hope everyone has a great weekend.
0 -
Just here to say hi to everyone. I have had nothing but love, support and acceptance from people on this board! If anyone felt differently, they kept it to themselves. Just celebrated our 35th anniversary. When our server asked what the occasion was, we told her and they comped our dessert! We started our relationship having to hide it, 35 years and 3 kids later, the world has changed!
I wish you all peace and the best health possible wherever you are in this unfortunate process
0 -
Sensitivehrt: You have a lot on your plate re: decisions so do take some no-thinking/pondering/googling time and find something beautiful that will take your breath away.
0 -
Ttfan: Congratulations on your 35th anniversary. Yes, the world has changed and here is hoping it continues to do so by acknowledging and supporting LGBT community.
0 -
Ladies
I was going through all of this in 2009. Hard to realize it has been 7 years. All I can say it does get better and you find a new normal. I was so glad I found these boards. There are are right or wrong choices. This cancer shit is not a one size fits all thing. Everyone makes the best decision for their life. I do say breathe, breathe & breathe again. I was lucky by BS was great and being gay so never an issue.
0 -
Lovegolf: You are right this BC stuff is different for every person and we all have to live with and make peace with any decisions we have made. I'll keep breathing into what my life is offering me at the moment (at this moment it is off to a soaking bath). I hope you are still loving golf! Cute dog.
0 -
Hi there all, sorry to jump in here, but reading that some of you may bee feeling lonely or unsupported here on BCO makes me sad! Welcome and healing light to everyone!
Xoxoxox
0 -
It's never been an issue for me, either, with my medical team.
Breathing is good advice.
I was pronounced NED today!!!
0 -
Hi all,
Congratulations Kate. So very happy for you. I think my situation may of been a isolated incident. Have moved on and focusing on my upcoming surgery. Have decided to go with the bilateral mastectomy after much thought. May 6th will be here before I know it!!
Hope all you ladies are well.
0 -
Kateb79: Great news! You must be so relieved.
Celebrate!
0 -
Hi magiclight, I'm Michele. My wife was just diagnosed in February with stage1 IDC of the rt breast.She's triple+, we've had a lumpectomy and scheduled to begin a chemo regimen of either Taxol and Herceptin or if we're chosen for the random trial of T-DMI1. So we don't really have much community here, we've been in this state about a year, and feel really alone in this. We do have a close friend who's a nurse but she and her wife live about 45 mins away and works full-time. Would love to hear from other couples on how they've managed chemo tx's and side effects. Any input would be really helpful thanx Michele
0 -
Hello preacherswife: I'm so sorry that you have to be dealing with your wife's bc diagnosis and subsequent treatment. This disease certainly impacts one's family. I have not needed chemo and do not have a partner but I do know there are other women on this site who are experiencing a similar situation and can talk about how they have managed chemo and side effects and relationships. This is a difficult time and you will get through this and the support you get here will help.
0 -
I just came across this info and it pertains to working with a partner who has BC. There might be something useful for you and your wife.
http://www.breastcancer.org/community/podcasts/partners-20160209
0 -
Hello everyone. I'm sorry I haven't been around in a while. My wife, kids and grandparents took a cruise we had planned since last year. It was so great! It did my kids so good to see me smiling and being normal!! I suggest a vacation during chem, if you can.
I have finished my four rounds of A/C every other week and will be starting Taxol every week starting May 5th. I had a LOT of nausea in the beginning (but never vomitted). But with every new dose my MO tweaked my meds to help me. I took Zofran and Ativan and added Compazine when I needed it. I also added Decadron starting the night of chemo. All of this helped my nausea significantly!! I also had the Neulasta patch placed after my treatment. About 2-3 days after I get terrible muscle pain, my skin feels bruised all over my body and I feel like I have the flu. This lasts about 2-3 days. My MO gave me Percocet last time which did seem to help some. I didn't take a lot of it, but did take some. During my second week I start to feel more normal. Oh, I also do acupuncture for general chest pain (I have expanders that I hate and plan to remove) and to help increase my white blood count.....there is research that it actually helps this! And I have never had an issue with my blood counts!!
Hope this helps!
0 -
i have never been the most feminine women, but with a BX i get stopped at every bathroom. i once saw a t-shirt that read "breast cancer - deal with it" or something to that effect. anyone know a source for t-shirts like that ? something beyond pink ribbons?
0 -
BPgas- was just looking at shirts online. There is a site called customink.com that lets you design your own shirt. Maybe that would work
0 -
Greetings,
I'm 60 (or 59 and 13 months), came out when I was 16, been with my DP for 20 odd years, we're both retired and spend an inordinate amount of time going to concerts. My DP has been quite ill for 6 months but is on the mend.
I have IBC, UMX with no reconstruction. I'm pleased to have NED but am tired of the ongoing side effects.
I, too, was challenged in a restaurant restroom: the woman shrieked "sir, sir, you're in the wrong bathroom." I said "actually I'm a woman with cancer, deal with it." Instead of addressing me, she ran out screaming it's alright." Although I kept silent, I really wanted to ask her "alright with who?"
Hoping this forum stays active.
br
0 -
Bride: As a starter I like the 59 and 13 month age - stick with it! Oh to be 59 and 13 months again
Sorry to hear your story and having had a BLMX just over a year ago, I expect that I may have a similar bathroom experience in the future. I have too much pain to wear a prosthesis and am often too rushed to coordinate vests, scarves etc to hide my flat chest. Unfortunately the image most people have a breast cancer is limited to pink ribbons, over-feminized - everything pink - posters, banners, celebrating the bright cheerful faces of women walking, running, playing, etc. No big posters of flat chested women living their post mastectomy life without reconstruction as that would be part of the reality that is just too uncomfortable and maybe connected to women not knowing that a woman's chest without breasts is flatter than flat.
One thing I learned long ago, I can never be prepared for every eventuality or in other words I can't have a tee shirt to fend off every phobia, political agenda, of just plain mean person I will encounter. So, hugs to you and thank you for speaking up about breast cancer – the other story!
0 -
I will flash some mastectomy scars if I have to.
Here's hoping I don't have to.
I mean, at what point did freaking out in bathrooms become normal?
0 -
Waving hello and checking in! Just turned 42 year old lesbian- diagnosed a week before turning 41. Since diagnosis- bilateral mastectomy ( no recon), chemo (4 rounds ac/4 rounds taxol) 33 rounds of rads- now on Tamoxifen. Was supposed to just need surgery and tamoxifen but positive nodes discovered in surgery changed the story quite a bit. So glad to be on the other side of treatment. Settling in the new normal. Wishing there was more GBLTQ community around this!
0
