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Calling all Gay, Lesbian, Bi, Transgender cancer survivors and caregivers

whistlestopgirl
Posts: 28
Joined: Nov 2009

Hi everyone,

I have been watching this board for a long time and see very little activity. I have to believe that in all of america there are more than a few glbt people dealing with cancer. I would love to see this board an active board like many of the others I see on this site. One possibility is to combine and make a new board open to lesbians, gay men, bi, and transgender people. Or just lets invite all the glbt to this board whatever it takes to make this a much more active and helpful board for all of us that deal with cancer on a day to day basis. I am not sure what it takes to make a new board since I am really not a techie, but I look forward to any imput to this post to see what can be done. For some people who have access to glbt centers in their cities that hold suport groups for cancer they are so lucky, but for many of us the internet is all we have to reach out and connect with others like us going through this battle with cancer. I hope that there are enough of you out there to create a active discussion group or posting group that helps us help each other. We have alot of issues unique to us while having to deal with the fight against cancer. I am asking for imput from survivors and caregivers as well as straight friends, family of glbt people. If the glbt community can have many sites for dating can we not have just one site to help us help each other during a very hard time dealing with the day to day of fighting cancer. Anyway I hope this post will help create something that I truly feel is needed so much. Thanks for listening, and I hope that there are several of you gay, lesbian, bi, and transgender people out there that want to share and support one another during a real hard journey on this road we call life.

your joking
Posts: 4
Joined: Mar 2010

So sorry you are not getting any support I am straight but I had a gay brother who I loved dearly he passed away 6 and a half years ago and I miss him every day he had a brain tumour that burst, so I am thinking about you and will pray for you. Are you going through chemo or radiotherapy now. I had chemo 3yrs ago for lymphoma at the end of my tongue now I have Malt lymphoma in my bottom eyelids I am deciding if to have radiotherapy but I think I might just put up with the teary and blurry eyes. All the best to you

whistlestopgirl
Posts: 28
Joined: Nov 2009

To connie and your joking,

Thanks for both of your postings to this. I really gave up on seeing any response to this post so I was very glad to see both of your replies after all this time. To your joking I am sorry for the loss of your brother,and I hope your situation will improve concerning your malt lymphoma. I am not the one with cancer it is my partner of ten years. She is undergoing chemo for the second time around after her ovarian cancer spread to her liver. We have been fighting cancer since 2008. Connie I know the wait for the pet scan probably seems like forever. My partner had to have one several months back and I remember us both waiting for the results. It seemed like an eternity. Connie I know how you feel about posting here as opposed to the other sites. Especially in my case being a caregiver it really doesn't feel comfortable posting in the straight caregiver sites. I know there are many straight but not narrow people out there, but there are still those people that are narrow minded and don't understand us. I am glad to see some of the straight people posting positive comments on our board. As I said in my initial post I would welcome posts here from gay men,transgender people,lesbians,bisexual, and straigt family and friends of glbt cancer survivors. I would hope by being inclusive of all the above this site would become more active, encouraging, and helpful to us all. Having a site that sits mostly abandoned doesn't do much for any of us. I truly hope that more people will begin to post here or as I said before start a new place on the discussion board that is more inclusive and active. I look for the day when all of us will be equaly excepted so we don't need to divide our boards, but for now that world isn't here yet. So at least to have a board that would include more of us to join forces would I hope make things more active and helpful. Thanks for listening, and if anyone knows how we can make a new more inclusive site on this discussion board please feel free to let me know.

Thanks,
Diane

congoody
Posts: 74
Joined: Jan 2010

As a lung cancer survivor I need all the support I can get from friends and like minded souls - recent CT was clear with the usual radiologists caveat ( there mey be something...) so await the PET scan in 6 weeks - could go on the lung cancer site but feel at home her if there is anyone at home... Connie.

annie60
Posts: 56
Joined: Feb 2010

following your progress I had surg 12/11/09 no chemo no radiation no lymph node involve. Had not seen your posts for a while then I saw them here Hope all goes well with you and scan in May. I am still ok feeling good working full time exercising and fighting off the terror when it hits.

congoody
Posts: 74
Joined: Jan 2010

So glad to hear from you Annie - I was "lucky" (if that is ever an appropriate emotion in these circumstances) to have had my lung cancer found early - stage 1 non small cell - traditional (not VATS) lobectomy in early Dec. - found that very hard to get over - but now it is the waiting game - as you said, fighting off the terror - thank you for your good wishes and I send them your way as well - connie.

Sheila66
Posts: 4
Joined: Apr 2010

I just sent you a friend invitation on Facebook. Thanks for sharing!
Sheila

Sheila66
Posts: 4
Joined: Apr 2010

Last month I was diagnosed with endometrial cancer. It's all still so new and I'm reading everything I can. I'll be having a complete hysterectomy and a lymph node biopsy when I get all the financial stuff in place. I'll happily participate on this board! I don't really have anyone to talk to about the cancer. I'm staying with my mom right now while we get everything going. But we don't talk about it. So thanks for the invitation.
Sheila

24242
Posts: 1417
Joined: Mar 2001

I am glad that others are finding their own way to this board. It must be very difficult Sheila not being able to talk about it. That is one thing I truly believe helps is being able to lay your feelings down or out of us not holding onto anything. I had an incredible partner who only got sick of talking about years after struggling our way back.
If it isn't enough dealing with the stress of finances let alone everything else one must face. We are just glad you found us Sheila and know that we will be thinking of you.
Glad you were able to move in with your mother.
Be good to yourself always,
Tara

whistlestopgirl
Posts: 28
Joined: Nov 2009

Sheila,

Glad you found this board. Please feel free to email me if you want. My partner of ten years is going through treatment for endometrial/ovarian cancer. Please feel free to talk on this board or to my email anytime you want. Talking about this whole process is important for your emotional health which in turn is important for your medical health. I look forward to hearing from you in the future.

Take care
Diane

LilHarley
Posts: 21
Joined: Apr 2010

Shamefully, I hadn't scrolled down this page far enough to find this board. I just clicked on breast cancer and am proud to have finally made my way here. I was diagnosed 3/10/10, had two surgeries, a partial mastectomy and return incision when clear margins were not obtained the first time. No lymph node involvement pos. hormones receptors and negative HER. Second visit to oncologist on Tuesday to find out results of chest CT and gene study on the tumor to guide me on my decision making process. So, I am eagerly awaiting the results. Will definitely have to have 6 1/2 weeks of rads and hormone therapy. Hoping to elude chemo, but will deal with it if necessary. Will check back here from time to time now that I know there is a lesbian section ;-)

LilH

congoody
Posts: 74
Joined: Jan 2010

I too did not see this board for the longest time - like you, did not scroll down far enough but eventually - sending good wishes for the results of your CT and hope you can elude chemo -keep us posted -
My next PET scan is in 10 days (not that I'm counting) - lung cancer -early stage 1 - here's hoping I too can elude chemo -
Best regards - connie,

LilHarley
Posts: 21
Joined: Apr 2010

I think we all start counting days and hours more closely once we are diagnosed ;-) Praying you can elude chemo too. Stay strong and keep in touch.

LilH

whistlestopgirl
Posts: 28
Joined: Nov 2009

To both LilH and to congoody,

I wish both of you the best possible test results. I am also glad you found this site. I wish it was not so far down on the discussion list. I guess probably alot of people just see the specific cancer they are dealing with and don't really go further down the list to see this board.

LilHarley
Posts: 21
Joined: Apr 2010

Hey, thanks for the welcome. I am very glad I finally scrolled down to find this board. I feel like I'm home now ;-) Today is the big day for test results. Praying all goes well. Will let you know how things turn out. Thanks again for the warm welcome.

LilH

LilHarley
Posts: 21
Joined: Apr 2010

I am so relieved that my test results came back great and there is no need for chemo. I will patiently (as much as possible) await the consult with the Radiology Oncologist to set up my rads. Will have 6 1/2 weeks then begin hormone therapy. Deep sigh!! Still have my fingers crossed and knees bent that you will have good results next week and can also elude chemo!!

LilH

congoody
Posts: 74
Joined: Jan 2010

Not sure how to spell that but you know what I mean - such wonderful news - you must be so relieved - will let you know how my PET scan goes - test booked for May 5 and results I hope by the 7th - again, great news - Connie.

calliemom64
Posts: 1
Joined: Apr 2010

I was diagnosed with breast cancer on Nov. 3, 2008...the day before my daughter's 10th birt hday. I went on to have a double mastectomy and 1 whole year of chemo...even though they got all the cancer with the surgery. I am a single Mom of 2, a college student (at 46!!), and have a girlfriend. We met in 8th grade, 33 years ago, but we we're both too scared to admit we were in love with each other. After graduation we lost track, and I found her after 28 years on Facebook!!! We haven't had a chance to be together yet, but on June 3, I am going to Ohio to see her, (I live in Missouri). My dilemma is that nobody but drs. & nurses have seen my scars. I am scared to death to let her see me naked. She is a Uterine cancer survivor, and her missing parts are not visible. Even if they were, I would still love her. She says that me not having breasts doesn't matter to her, just the pain I went through of going through 3 surgeries & a year of chemo with absolutely no help!
I have nobody to talk to or confide in except Linda. I've kept all of this inside me for the past year & a half. Now it is all coming to the surface & I am not dealing with it very well.
Does anybody know if ACS or Medicaid will pay for a private counselor for me to talk to? I REALLY need someone. I am literally on the verge of a nervous breakdown, and I am scared.
Any information you have would really help. Thank you...

angbertolino
Posts: 4
Joined: May 2010

Im on facebook: Angela Bertolino in pittsburgh pa. Its so rough to be in this position and i would love to speak with anyone regarding this. we also have two small children and it makes it even tougher. i love her dearly but this cancer has turned me into much more of a nurse than a partner. i would love to hear from anyone with any feedback to help me cope and get my wonderful wife through this horrible disease BECAUSE WE WILL SURVIVE THIS!!!!!

bassy18
Posts: 1
Joined: May 2011

I was my ex girlfriends care giver. We were exes before the cancer. I can tell you from experience that you will be her nurse, doctor, lawyer sister brother mom and or dad thru this. it will change the foundation of your relationship....but in a good way. its hard....really hard..i'm not going to lie. But my advice will be to love her...and don't focus on the little things you do....i would say just focus on keeping the stress out of you guys lives as much as possible. Sometimes that means turning off the cell phones...it may mean yelling at doctors for her...but just focus on getting rid of stress....and you'll be fine. I hope this helps. just fyi...i live with my ex now....still friends...and we made it thru. If we can do it as exes...you can most definitely do this with your wife :)

LilHarley
Posts: 21
Joined: Apr 2010

I have my first rads treament tomorrow and after that only 32 more ;-) Keep us posted and know that you are in our hearts and prayers.

LilH

taffinang
Posts: 18
Joined: May 2010

Hello everyone, I am fairly new to the site and just stumbled onto this section and am glad I found it. I am a 38yr old lesbian, proud mom of 3, grandma to one, and have been thru thryoid cancer twice and looking at my 3rd go round. My girlfriend has been great as the last 2 1/2 years have been pretty rough on her with me being in and out of the hospital, I had 4 surgeries and some other stuff before getting diagnosed with thyroid cancer the 2nd time around and that was only a year ago. I live in Wyo which is pretty rural so my access to support groups, let alone lesbian ones, is limited so finding this site was a god send for me. I know I have been blessed and pretty lucky to have such a wonderful woman who has stood by me and even held my hair out of the way while I was puking and basically was disgusting lol, if that doesn't say love what does? :)~ We have only been together for approx 6 years and man it has been a rough journey for her, but the goddess blessed me with a wonderful woman. Part of me does hate putting her thru this so most of the time I keep how I feel to myself, I really hate worrying her. Anyways this has turned into a ramble and I do aplogize for that. I am looking forward to reading the posts on this forum and meeting (virtually at least) others.

Taffi

whistlestopgirl
Posts: 28
Joined: Nov 2009

Hi Taffi,

I am the caregiver of an ovarian/endemetrial cancer survivor. We have been together 10 years and we also live in an area that offers little in the way of support groups. Especially lesbian and gay support groups. Anyway we have been on this journey about two years. My partner is on her second round of chemo treatments and has just started taking other drugs to slow down the spread of her cancer. Anyway welcome to this board. If you want you are welcome to email me directly. It does help having others who know what it is like to walk down this long hard road. My partner also feels she hates putting me through this, but there is no place on earth I would rather be than next to her. I know that is where I was always ment to be, and I don't regret one minute of my time helping her fight this hard battle against a terrible enemy called cancer. Also don't apologize for what you call rambling. We are here for each other on this board and sometimes writing out our feelings is good for us. This is a good place to express our feelings so please feel free to email this board as often and as long as you want and also feel free to email me personally as well.

Take care,
Diane

24242
Posts: 1417
Joined: Mar 2001

And so grateful you found a place to lay all you feel and never be sorry for that. It is a safe place to be totally honest though I know sometimes it feels like we all are suppose to be these positive beings. We have to be enough of that out in the real world sparing our families often from our harsh truths.
Dated my girlfriend for 4.5 years long distance then moved after I was ill with my 14 year old angry teen. I needed help with him just didn't know how much help I would truly need in the end. Love is an amazing thing and just when you think you have lost it and maybe forever something magical can Happen... This journey through my health hasn't been easy though we have had some good years and that is what we remind ourselves of and that we have weathered our storms.
I like you both feel so fortunate and can only hope that she feels like you do Diane. We have come along way since my dx 14 years ago and just thankful we found away to stay together after it was all said and done. We are now 18 years and counting and actually for the first time in years I am happy and finally feel like we have found our place with each other and our new normal...
Tara

Sweet25
Posts: 1
Joined: Aug 2010

Hi Taffi,
I am currently 35 and was most recently told my papillary thyroid cancer has returned. As I write this, I am in seclusion following my second treatment of RAI since my surgery last yr. My cancer originally was found accidentally by one of my doctors during a routine checkup at the being of 09. I had surgery in April and had a full thyroidectomy and several lymph nodes removed because there was evidence it had metastasized to one of my surrounding lymph nodes. I completed RAI in June of the same year and all seemed to be going well until Dec. when my blood work started showing high concentrations of thyroglobulin. At the beginning of this year, I had my post surgery 6 mos thyroid uptake scan with thyrogen shots which produced no evidence of cancer but my blood work continued to show high levels of thyroglobulin. My endo then sent me for an ultrasound, chest ctscan, petscan and final an MRI. All of which came back negative. It was decided that I would repeat my thyroid uptake scan again in 6 mos which was roughly a week ago. This time around though, I convinced my endo to follow an abstract that I discovered through an endocrinologist magazine to put me on a low iodine diet and take me off my meds similar to what I had done during my initial RAI to see if it would produce any results....which it did, faintly in my lower chest area. I am also a lesbian and have been scouring the web looking for support groups where I can meet someone such as yourself. Hope to chat with you soon.

Amy

jamie-d's picture
jamie-d
Posts: 7
Joined: Jul 2010

Hi, I really tk it's cool that people are responding to idea. A place where we can go to talk about what we are dealing with is something I think we all need. I am 31 and have Mixoid Liposarcoma, I had surgery 1 n half months ago. Now they r checking my bones. I'm in the dark about my cancer. I'm gonna have to start asking questions and quit being afraid. I am just now realizing " I have cancer" I havent had chemo yet n i'm crossing my fingers that I wont have to and in all I pray I have a good doctor, she has been real nice so far, i'm just really freaked out. I feel like this web page is the best thing that has happened to me in a long while. I'm not the only one. GOD Bless you, jamie

tjhay's picture
tjhay
Posts: 655
Joined: Oct 2008

Have not been around alot last few months was trying to move beyon brest cancer, but am now waiting to see if the beast has draged me back in to the war. will try and post more often
tj

wendybia's picture
wendybia
Posts: 73
Joined: Jan 2010

i really do hope your war is over
wendy

dorookie's picture
dorookie
Posts: 1684
Joined: Jul 2007

Will be sending up prayers for you that the beast is still gone....

God Bless
Beth

Domina's picture
Domina
Posts: 62
Joined: Dec 2010

Hi Everyone,
I am a single Lesbian, (54) endometrial cancer survivor. I already received some great replies from "whistlestopgirl" on another posting in this same category.

I was 2 yrs. post menopause & already stopped the night sweats, the hot flashes, the moodiness, crying jags, fuzziness & my "normal" insomnia was not as severe & I thought I made it over to the side of blissful post menopause life. I started "feeling weird" around 9/1/10, bloating, abdominal & pelvic pain, moodiness, crying @ dog food commercials, assorted aches/pains, nausea & ovarian pain.

I made a gyn appt. & could not get in till 9/17/10. Outer & inner labia was sore inflammed & itching. Ran a bunch of tests, I thought I was having vulva cancer symptoms & the regular gyno pooh-poohed me, said I did not have vulva cancer.

Then 10/23/10 started bleeding vaginally really bad, severe cramps, clots, PMS, everything like when I use to go through periods of missing periods & then hemmorhaging like in the old "period" days.

Did not do any of those endometrial biopsies cause I was too much in pain, couldn't even get the speculum in properly. She did an internal transvaginal ultrasound & found my lining was about 9mm thick & a mass. Had D & C with hysterscope on 12/13/10 & sent tissues to path lab. DX with grade 2 endometrial cancer on 12/21/10.

Went in for full, radical hysterectomy via daVinci robotic laproscopic surgery. Took ovaries, tubes, uterus, 7 lymph nodes & cervix. Staged it as self contained in uterine lining Stage 1A/Grade 2. Everything clear except small spot in uterine lining. Some suspicious cells found in pelvic wash but none were "malignant". Thank God, no chemo, radiation or pills required. Feel great.

I live alone, no financial support except living paycheck to paycheck from my job in a call center. I have no savings. My insurance stinks, it is almost like no insurance & all these bills are coming in. I can just almost pay my normal bills if the days fall right.

Question is the medical bills are piling up, (deductibles, co-pays & the portion the insurance does not pay) it is almost impossible to pay them, once I pay normal bills I am lucky if I have 2 cents to rub together. I am going to have to somehow apply for financial medical assistance but there are so many bills, the reg gyn, the gyn/oncologist, the path labs, the radiologists, the blood labs, the chest x-rays, ct scans, ekg/eeg, the anesthiologists etc. etc. (YOU ALL GET THE PICTURE.) I get 1/2-1 hr break for lunch, can't leave work to visit all these entities. If I don't work, don't get paid. how do you co-ordinate all this stuff?

I am getting myself stressed out & sick, my digestive system has bottomed out. Can one centralized office in the hospital co-ordinate all these standalone bills? Aren't the cancer centers in my hospital where my oncologist is suppose to ease the financial burden of cancer patients/survivors? It is almost like I am not a real survivor since I did not have to go through additional therapy.

Anyway does anyone have some advice? I need some ideas. thanks for listening to the ranting but I am crazy trying to figure out where the money will come from. Thanks, love, peace, health & blessings to all!!!!!!!!

whistlestopgirl
Posts: 28
Joined: Nov 2009

Hi,

I wish I had some advice about your financial questions, but I really am not sure how that works. Thank goodness my partner had good insurance or we would be in your boat. It is sad that people have to deal with all the effects of dealing with cancer and then on top of that many have to deal with the financial aspect as well. Of course also I feel for you since even though my partner has great insurance since we are not recognized as a couple I don't get to be on her insurance, and like you my insurance is also garbage with high deductables and of course a high premium. So I do understand that part of how you feel. Anyway even though I don't have advice on the financial part know that I am there if you need an ear to listen. Again feel free to write me at my email address on here or to send another post on this board whenever you need to. I hope someone will see your post on this board and send you some info on how to go through the maze of bills you are getting. Take care

dianelynn41's picture
dianelynn41
Posts: 71
Joined: Jan 2011

Hello, about your financial questions. You might try a website "CancerCare", they can help with co-pays and a varety of other things. We couldn't use them because we don't have insurance but they seem geared towards helping people with insurance.

Good Luck
Diane

maryv1119
Posts: 37
Joined: Jun 2011

Hi Domina,

My name is Mary and I have just finished treatment for uterine cancer (endometrial cancer and sarcoma of the uterus) stage 3C grade 3. I'm also in the medical billing field, I'm also dealing with massive bills.

My advice:
Make a list of everyone you owe.
Each day on your lunch break call one of the offices you owe and ask to apply for financial assistance. Do this until you have contacted all of the people you owe.
If the office does not have a financial assistance program, or if you don't qualify, start sending a "good faith" payment to everyone you owe even if it's only a dollar.
Along with your good faith payment send a short letter explaining why you can't pay the entire bill and that you will continue make monthly payments until the balance is paid off. Usually billing offices will not send you to collections if they are receiving $, even if it's a small amount.
Sometimes if the hospital gives you financial forgiveness, some of the other offices/labs will then follow the hospitals lead.

Another suggestion: Most employers who offer medical insurance also offer Flexible Spending Accounts. Since you will most likely have follow-up care, you can sign up for a FSA to cover next years deductible and co-insurance. Your employer will then take out a small amount out of each paycheck throughout the year.

I would also ask your human resources department at work if they have an employee assistance program. Some employers offer programs to help employees who are facing financial difficulties do to illness.

Best of Luck to you! : )

dorookie's picture
dorookie
Posts: 1684
Joined: Jul 2007

I hope you dont mind but I would like to copy and paste this to the Colon Cancer section. I am a stage 4 survivor thus far, and problems like this arise so often. I have been blessed with good insurance through out my journey, so I am one of the few lucky ones. But this post lays it out great... and I thank you for that..

HUGS
Beth

akfiresgirl
Posts: 2
Joined: Jun 2011

Hi there. I was diaganosed with papillary and follicular cancer, one differentiated cancer in each lobe, back in 2004. I was married to my now ex husband at the time, who wasn't really around for the journey. I have been cancer free for 7 years now and have seen some wonderful endocrinologists and oncologists in the process. Once I started this journey, I also encountered the fact that I truly appreciated life and all the ups and downs it offers. My husband however, was not on the same page. However, during this trying time, I also realized my sexual orientation, so lots of changes and adjustments needless to say.
Here in Alaska, The American Cancer Society has been awesome and a great resource for me personally. Nationwide, Thyca.org has been another resource I have been able to utilize to empower me in my life long journey. Wanted to share a little of my experience and wanted to thank all of you for doing the same.

sinee's picture
sinee
Posts: 197
Joined: May 2011

Just found this page, guess I am a bit late considering the post was Feb. of 2010. I will check in again to see if there is any activity. Love to you all. Still in the process.

Moralesa
Posts: 3
Joined: Sep 2011

Hi everyone I am from Austin, Texas, a senior in college and recently finished radiation from the recurrence of the Desmoid Tumor in my hip. My girlfriend played a huge part in getting me through everything.

Hope everything is going good with all of yall

Abby

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