Didn't know of the perfect place to put this. I was diagnosed with Stage 4 kidney cancer back in mid July. It's been a crazy ride since. Anyone else dealing with cancer? I am hoping it doesn't destroy my ability to have genital surgery.
Hi CMD042414,
Cancer? You might say that. There are several of us here that have had or are currently dealing with that nasty ailment.
I've also fought with renal cell carcinoma or kidney cancer. I lost my left kidney, about half my pancreas with collateral damage, and have let doctors try to kill me with IL-2 treatments for about 5 weeks. They have told me twice now I had 3-6 months to live. The last time was nearly 3 years ago. Monday I go for my 3 month CT scan and labs and then wait to get the verdict from my oncologist on whether it has returned a 3rd time or not.
I have not heard that kidney cancer has stopped anyone from HRT or SRS. When I told my oncologist I was trans she was genuinely happy for me. You of course will be better consulting with your own doctor about how it may affect you.
I hope your cancer was caught early and is well taken care of. I pray there are no reoccurrances of it. I can tell you that is no fun, no fun at all.
Hugs,
Laurie
Like Cindy said below. Feel free to PM me if you need to talk.
Hi CMD042414,
Welcome to the the big C club of Susan's. Yes I have Cancer in my throat. I've had quite a bit of therapy: chemo, radiation and surgery. I'm all good now and just going through my 6 month post-op scans.
Cancer isn't fun as we know but it certainly hasn't slowed me down. I was the first transgender patient that most of my medics had ever met (that they knew off!) and I had no problems with how I was treated and respected.
I can't think of any reason why having Cancer should affect you having genital surgery. It may even be a good thing.
I am certain that Laurie and I speak as one in telling you that we are here for you at any time you want to talk about anything about having cancer. We are a special group of brothers and sisters.
Cindy
Wow. Thanks ladies. Powerful stuff. I've been told that one of the possible treatments is bad for wound healing which is where surgery becomes an issue. But hoping I won't need that. I've been fortunate since my transition that medical professionals have all been great with my transness.
Quote from: CMD042414 on August 11, 2017, 08:56:19 PM
I've been fortunate since my transition that medical professionals have all been great with my transness.
That's good for you for sure. Monday I go for my appointments en femme for the first time. It ought to be interesting. I oncologist knows about me as does my GP and therapist. But I'm still a bit nervous about it. But no way am I putting on my past attire.
What treatment is that they are discussing that isn't good for healing? Where are you with regards to your cancer? I saw the stage IV part. Have you had anything done about it yet?
Hugs,
Laurie
Quote from: Laurie on August 11, 2017, 09:07:23 PM
That's good for you for sure. Monday I go for my appointments en femme for the first time. It ought to be interesting. I oncologist knows about me as does my GP and therapist. But I'm still a bit nervous about it. But no way am I putting on my past attire.
What treatment is that they are discussing that isn't good for healing? Where are you with regards to your cancer? I saw the stage IV part. Have you had anything done about it yet?
Hugs,
Laurie
I think healthcare professionals see so many things and work with so many types of people that they aren't rrally fazed by much. Now this totally depends on where you live I am sure. I am in a major city so folks are more open minded and educated.
My kidney and 6 lymphnodes up and down my side and back were removed 4 weeks ago. I bounced back fast. A week later I was driving. I have been fine since. Last week I met with an oncologist from two different hospitals. Had new scans taken also. I find out if those scans show more cancer in me next week. If they are clear no treatment, just scans every 3 months probably indefinitely. But I have a 40% chance of it returning which the doc said is high.
If the scans show more cancer and it cannot be surgically removed I have to undergo treatment. 2 types: immunotherapy which I would push for. It has no side effects and is cutting edge. Or targeted therapy pills for the rest of my life. These have bad side effects and that's where the wound healing issue comes in.
CMD042414 I wish you nothing but the best in your battle with cancer.
I had testicular CA 3 yrs ago and had my right testicle removed so I can empathize with you on the ups , downs , and the waiting. Luckily mine was caught quick and so far I have a clean cancer free life. But who knows as this ugly malady can strike any of us very quickly.
Prayer for you and your family from a Cancer survivor!
Karrie
I was diagnosed with multiple myeloma about 5 years ago, and went through about 6 months of nasty infusions before settling into some drug therapies that have been able to keep things in check. My prognosis is good, but the drugs are crazy expensive, and will hopefully continue to be covered through my health insurance, including eventually Medicare (if it's still around).
My oncologist was the first medical professional that I came out to (besides my endo, of course), and he's been so supportive, almost giddy when I made my first visit after transition. I think I'm his first trans patient, and he's been researching topics of interest and passing on his discoveries to us each time we visit. When my mother questioned whether my transition was going to lower my chances of surviving cancer, I was able to tell her that high-dose estrogen was previously used as a prophylaxis for prostate cancer, so transition actually improved my chances of surviving cancer (I enjoyed throwing that one out there :) )
Good luck with your own journey. I'm always optimistic about cancer prognoses, as there is so many great research studies going on, with breakthroughs coming out all of the time. Whenever I think about having cancer, I feel like everyone has got some kind of cancer in them, and getting the diagnosis is, in a sense, a blessing compared to all of the people who never know what cancer lurks within. I hope that the surgery is compatible with your transition plans. I imagine that being able to complete your transition may be the best boost to your system, letting you live fully as your authentic self.
Erin
It's nothing like what you all have gone through but I've had melanoma on the back of my hand twice. It's really hard to keep even waterproof sunscreen on your hands. So I added gloves to my outfit if I'm going out in sunlight. I never really thought of skin cancer as anything serious or even real cancer until my doctor told me melanoma can actually kill you if you don't have it treated. That's just great.
Julia
Quote from: CMD042414 on August 12, 2017, 07:14:16 AM
My kidney and 6 lymphnodes up and down my side and back were removed 4 weeks ago. I bounced back fast. A week later I was driving. I have been fine since. Last week I met with an oncologist from two different hospitals. Had new scans taken also. I find out if those scans show more cancer in me next week. If they are clear no treatment, just scans every 3 months probably indefinitely. But I have a 40% chance of it returning which the doc said is high.
If the scans show more cancer and it cannot be surgically removed I have to undergo treatment. 2 types: immunotherapy which I would push for. It has no side effects and is cutting edge. Or targeted therapy pills for the rest of my life. These have bad side effects and that's where the wound healing issue comes in.
Hi Again,
Laurie here, My oncologist is a 40ish lady that was pregnant when I met her. My visits with her start as social visits as we discuss her kids and my grand children and/or my latest adventures on the road. This time I will be able to at least update her on my road trip to Maine. I like her a lot and she was the second person I came out to. She's very supportive of me. She'll be happy for me to hear I've gone full time too.
In my case the doctors thought my cancer was contained completely within my left kidney and removed it laparoscopicly. Unfortunately some the cancer had escaped and went looking for another home. It found one in my pancreas. Several years later, I found out i had become diabetic and after my blood sugar rose to 477. A Whipple procedure a month later removed about half of my pancreas and left me needing enzymes to help me digest some foods. I also do insulin shots twice a day. Another jump in time it returned yet again and this time it was deemed inoperable and again I was given 3-6 months to live. I was offered pills that might give me a bit more time but were also going to make me sick. I in turn asked about Interleukin 2 treatment having heard of it from a different oncologist and reasearched it myself.
This is possibly the immuno therapy they were talking about with you. IL-2 is a really difficult treatment consisting of 2 rounds of up to 14 treatments every 8 hours of a toxic mixtures of chemicals intravenously while in a hospital under ICU level care. Each round take about 2 weeks with a few days in between rounds to recover a bit. (I got sick and had to return to the hospital sooner than planned.) The idea is to make you sick in such a way that it boost your immune system to enable it to fight the cancer. Chemo on the other hand is designed to attack the cancer directly and does not work on kidney cancer and neither does radiation. IL-2 helps less than 30% of those treated. Even less are helped in a significant way. And less yet (about 6%) are greatly helped by it. I appear to be in that category. IL-2 it the only treatment that offers a cure but it is a such a long shot it isn't discussed much.
Il-2 treatment in and of itself can kill you, hence the ICU requirement. Both of the patients before me that year had to be resuscitated during treatment. I managed about 20 of the 28 possible doses. During which I reached a point where I thought that if I didn't fight for my next breath I wouldn't be taking another. I was on 6 or 7 liters or oxygen at the time and had swollen up like a balloon due to the side effects of the treatment. I finally declared I had had enough and stopped treatment. Like I said it is a difficult treatment but what are you going to do when the alternative is death? For me it is working so far. Every 3 month I go to see if it has return a 3rd time. If it does it could me the last. I think this prospect played a part in my decision to begin transition. I live on borrowed time and want to end life as I have always wished I could... as a woman.
I pray your cancer never returns. Should you need someone to talk you are welcome to contact me directly via PM and we can go from there. Cindy and others are here for you also. We understand the challenges you face and it isn't easy for any of us but we fight to survive. We fight our cancer and to be ourselves.
Hugs,
Laurie
The ironic part? I have a cancer that only occurs among 2-3% of adults. It is called XP11 Translocation! A trans man with a trans cancer, can't make it up!
Quote from: Laurie on August 12, 2017, 12:59:26 PM
Hi Again,
Laurie here, My oncologist is a 40ish lady that was pregnant when I met her. My visits with her start as social visits as we discuss her kids and my grand children and/or my latest adventures on the road. This time I will be able to at least update her on my road trip to Maine. I like her a lot and she was the second person I came out to. She's very supportive of me. She'll be happy for me to hear I've gone full time too.
In my case the doctors thought my cancer was contained completely within my left kidney and removed it laparoscopicly. Unfortunately some the cancer had escaped and went looking for another home. It found one in my pancreas. Several years later, I found out i had become diabetic and after my blood sugar rose to 477. A Whipple procedure a month later removed about half of my pancreas and left me needing enzymes to help me digest some foods. I also do insulin shots twice a day. Another jump in time it returned yet again and this time it was deemed inoperable and again I was given 3-6 months to live. I was offered pills that might give me a bit more time but were also going to make me sick. I in turn asked about Interleukin 2 treatment having heard of it from a different oncologist and reasearched it myself.
This is possibly the immuno therapy they were talking about with you. IL-2 is a really difficult treatment consisting of 2 rounds of up to 14 treatments every 8 hours of a toxic mixtures of chemicals intravenously while in a hospital under ICU level care. Each round take about 2 weeks with a few days in between rounds to recover a bit. (I got sick and had to return to the hospital sooner than planned.) The idea is to make you sick in such a way that it boost your immune system to enable it to fight the cancer. Chemo on the other hand is designed to attack the cancer directly and does not work on kidney cancer and neither does radiation. IL-2 helps less than 30% of those treated. Even less are helped in a significant way. And less yet (about 6%) are greatly helped by it. I appear to be in that category. IL-2 it the only treatment that offers a cure but it is a such a long shot it isn't discussed much.
Il-2 treatment in and of itself can kill you, hence the ICU requirement. Both of the patients before me that year had to be resuscitated during treatment. I managed about 20 of the 28 possible doses. During which I reached a point where I thought that if I didn't fight for my next breath I wouldn't be taking another. I was on 6 or 7 liters or oxygen at the time and had swollen up like a balloon due to the side effects of the treatment. I finally declared I had had enough and stopped treatment. Like I said it is a difficult treatment but what are you going to do when the alternative is death? For me it is working so far. Every 3 month I go to see if it has return a 3rd time. If it does it could me the last. I think this prospect played a part in my decision to begin transition. I live on borrowed time and want to end life as I have always wished I could... as a woman.
I pray your cancer never returns. Should you need someone to talk you are welcome to contact me directly via PM and we can go from there. Cindy and others are here for you also. We understand the challenges you face and it isn't easy for any of us but we fight to survive. We fight our cancer and to be ourselves.
Hugs,
Laurie
My gosh I hope that it all goes well for you. Cancer is a true b*tch. My other organs were cleared before my surgery and the oncologists are saying I am most likely still in the clear so here's hoping. I was told about IL-2. The way cancer treatments evolve these days is incredible because the docs say that is considered an older method already. The immunotherapy I wpuld receive would have little to no side effects that impact my daily life but it could enlarge other organs so I'd have to be closely monitored. Because of the rare nature of my cancer conventional methods aren't being considered.
The interesting thing for me was I am so used to my being trans as the main "issue" I deal with that when they told me cancer I didn't and still don't know how to process it fully. Suddenly there is something more important to my health that I must concentrate on. Its an odd feeling. Everyone has told me how composed I have been and I'm just thinking well life ain't necessarily been easy for fair for me anyway! Not much dialogue out there on being trans and having a chronic illness or condition. Of any kind not just cancer.
Quote from: Julia1996 on August 12, 2017, 10:29:50 AM
It's nothing like what you all have gone through but I've had melanoma on the back of my hand twice. It's really hard to keep even waterproof sunscreen on your hands. So I added gloves to my outfit if I'm going out in sunlight. I never really thought of skin cancer as anything serious or even real cancer until my doctor told me melanoma can actually kill you if you don't have it treated. That's just great.
It's very well known here. Australia is somewhat famous for all the deadly animals, but the sun is even worse.
"Two in three Australians will be diagnosed with skin cancer by the age of 70."
https://www.sunsmart.com.au/skin-cancer/skin-cancer-facts-stats
Quote from: Julia1996 on August 12, 2017, 10:29:50 AM
It's nothing like what you all have gone through but I've had melanoma on the back of my hand twice. It's really hard to keep even waterproof sunscreen on your hands. So I added gloves to my outfit if I'm going out in sunlight. I never really thought of skin cancer as anything serious or even real cancer until my doctor told me melanoma can actually kill you if you don't have it treated. That's just great.
Julia
Julia,
Cancer is Cancer with a big C. You cannot minimize it. It is a devastating diagnosis and all of it is potentially life threatening. Skin cancer is a wide far reaching cancer and is no less dangerous than breast cancer, kidney cancer, brain cancer etc. All of it should be taken as serious no matter which it is nor how small. It's scary.
I'm glad yours was discovered and had it taken care of.
Hugs,
Laurie
Quote from: CMD042414 on August 12, 2017, 03:26:36 PM
The interesting thing for me was I am so used to my being trans as the main "issue" I deal with that when they told me cancer I didn't and still don't know how to process it fully. Suddenly there is something more important to my health that I must concentrate on. Its an odd feeling. Everyone has told me how composed I have been and I'm just thinking well life ain't necessarily been easy for fair for me anyway! Not much dialogue out there on being trans and having a chronic illness or condition. Of any kind not just cancer.
I can relate completely to that. Even though I have worked in the medical field of cancer for many years, and trained some of the people who ended up treating me, I was very relaxed about discovering I had cancer. I said to my lead medic at one time, that I had hoped to die for so long being trans that finding out that I had cancer that could kill me, when I had finally accepted myself was a very strange feeling.
I believe that in my case as I had controlled my emotional turmoil of being trans I found it easier to control my fears of having cancer.
Incidentally I'm giving a talk to the Australasian Medical Students Conference next Saturday about how to treat TG patients with respect. One thing I was thinking of saying that for me having cancer has been easier to cope with than being transgender was for most of my life.
Next thing I have to do is figure out how to give the talk...as I no longer have a larynx! I'll figure something out by next week, we TG & C survivors are a resourceful mob :laugh:.
Stay strong everyone.
Quote from: Cindy on August 12, 2017, 04:40:52 PM
I had hoped to die for so long being trans that finding out that I had cancer that could kill me, when I had finally accepted myself was a very strange feeling.
That is exactly how I feel. Verbatim.
Yup and this whole transition thing may have saved my life in more ways than one.
I had srs about a year ago and 6 weeks post surgery I got a call from my srs dr. One of my testicles contained a cancerous tumour. It did not metastise and was fairly small thank goodness. I have had multiple scans since and all is clear so far. The situation could have been so much worse.
Having cancer really changes things and has really caused me to view a lot of things differently.
My situation is quite fortunate for having got cancer and every dr. that I talk to says you cannot make this type of story up. The irony is quite something.
I am total stealth,and do not identify as TG at all, just female. Neither medical condition defines my identity. It makes getting any kind of support really awkward so I have not bothered and the cancer dr's are out of their wheel house dealing with my situation but they manage and since I am under surveillance only it helps a lot.
Good luck with your treatments.
Jamjam
Jamjam, if you have insurance and coverage for your surgery was refused, go back to the insurance company and demand repayment for at least part of your surgery. When I had my nose worked on, the insurance company covered opening up the passages but not the cosmetic part of the surgery. You have save the insurance company a good deal of money by avoiding chemo so at least they should cover part of your expenses.
Hey Dena thanks. My Srs was covered fully with no issues. All of this can get quite complicated though especially with multiple issues going on as you have suggested. Having srs recovery and now cancer apart of my life has made for a roller coaster year though.
Best
Jamjam
Well I met with my srs surgeon again for the first time since the cancer thing. Her team won't do phalloplasty until I've had a year with scans free of cancer. I am at high risk of recurrence so now I feel defeated and hopeless. I am afraid that I will never be able to have my surgery. I was not very dysphoric before but now I am. My life without having a penis is impossible to be happy with. I hear about other guys booking their phallo and I just feel even worse about myself.
I am going to consult with other surgeons but I am scared they will either say the same or flat out refuse to do it all because of the wound healing issue with a potential cancer treatment. I do not feel whole anymore. I don't feel confortable with my body. I don't feel comfortable dating a woman even if she knows. I don't feel comfortable sexually. I am scared this will be my life however long or not it may be due to cancer.