"Survivorship" Issues

I was diagnosed with adenocarcinoma of the cervix this May. Tried a cone biopsy, and the margins were questionable for invasive cancer. I'm single, with no prospects...just yank the whole thing out. So in July I had a hyst. I was doing well with it until they wheeled me out of the pre-op area towards the operating room. I balled my eyes out the whole way. I've been "dealing" with it ok since then, but every once in a while it hits me, harder each time that the previous one.

This time of year is normally hard for me, but this year it was compounded. It started mid-Nov with my birthday (single/alone/no kids), then went to my brother's wedding (single/alone/no kids), to Thanksgiving (etc), Christmas (etc), New Years (etc)...you get the idea. Throw on top of it the fact that I'm never going to have kids, and I can't even donate my eggs because the fertility clinic will not take them, I'm feeling peachy keen.

I work in emergency medicine, so I'm used to dealing/not dealing with things on a regular basis. I can do a shot gun to the head and then discuss it over pizza. When does this get better? I'm tired of feeling all alone on some isolated island that no one is ever going to understand. Grrr!!!!!

Thank you for letting me vent. I'm at work right now, and I've been up since 7:00am yesterday, so I think a lot of my crankiness has to do with being overtired.

Comments

  • 13 Comments sorted by Votes Date Added
  • I don't have any great words of wisdom but I know you're not alone in all this mess. I wish we (I'm an oncology nurse navigator) did a better job of helping people deal with the loss of fertility but unfortunately we don't. There was a thread in the general discussion about this too, maybe connecting with the other people might be helpful.

    Have you been counseled about freezing your eggs to possibly use with a surrogate in the future?
  • Nope...I was told about nothing. The thing is I'm in EMS as well as work as a MA for an OB/GYN office, so I'm not exactly stupid when it comes to health issues. I asked the questions, but wasn't provided with any answers. Eventually I gave up.
  • DMMDMM Community Member
    bethyr0ja;263 said:
    I was diagnosed with adenocarcinoma of the cervix this May. Tried a cone biopsy, and the margins were questionable for invasive cancer. I'm single, with no prospects...just yank the whole thing out. So in July I had a hyst. I was doing well with it until they wheeled me out of the pre-op area towards the operating room. I balled my eyes out the whole way. I've been "dealing" with it ok since then, but every once in a while it hits me, harder each time that the previous one.

    This time of year is normally hard for me, but this year it was compounded. It started mid-Nov with my birthday (single/alone/no kids), then went to my brother's wedding (single/alone/no kids), to Thanksgiving (etc), Christmas (etc), New Years (etc)...you get the idea. Throw on top of it the fact that I'm never going to have kids, and I can't even donate my eggs because the fertility clinic will not take them, I'm feeling peachy keen.

    I work in emergency medicine, so I'm used to dealing/not dealing with things on a regular basis. I can do a shot gun to the head and then discuss it over pizza. When does this get better? I'm tired of feeling all alone on some isolated island that no one is ever going to understand. Grrr!!!!!

    Thank you for letting me vent. I'm at work right now, and I've been up since 7:00am yesterday, so I think a lot of my crankiness has to do with being overtired.

    I was diagnosed with endometrial adenocarcinoma over 11 years ago when I was 25. My GYN-Onc had given me a choice of going with a hysterectomy or going on a clinical trial of hormonal therapy. Well I had already been on various hormones for several years (so didn’t have much faith in that) and having watched my father (he was only 46) die of colon cancer just 7 years prior to my diagnosis, I opted for the hysterectomy because I just wanted the cancer out of me. My GYN-Onc had told me there was time to get pregnant before having the hysterectomy (I was stage 1a and the tumor was slow growing) however I only had been out a few times with the guy I was seeing at the time (he was definitely not good father material, he wasn't very good boyfriend material either!), I didn’t have money for a sperm donor and I was not ready to be a single mother at 25 so I said screw it and had the surgery. The oncologist was of the belief that if the ovaries looked okay that I should keep them because he didn’t want to put me on HRT at 25. He also said that I could always look into surrogacy down the road (freezing eggs was not an option back then).

    I was sort of like you, I was okay until I got into the operating room and then I started to get hysterical because I didn’t know if I would have my ovaries until I woke up after the surgery and of course I was worried whether I was going to wake up period…..thank goodness they shot me up with some valium and I did have my ovaries when I woke up.

    The first couple of years really sucked because everyone I knew was pregnant and everyone thought it was a good idea to try to push me to go to all the baby showers. I usually declined and just sent gifts off the registry.

    Throughout the years I have held onto the hope that I might be able to have my own eggs harvested and go through a surrogate, although I always knew in the back of my mind the chances were probably slim since it can be very expensive and the laws are complicated and different in each state…but I kept some optimism that it’s not impossible. I have a ton of resources on surrogacy if you ever need them.

    To add insult to injury, I was diagnosed with a second primary cancer in my small intestines (small bowel) just a few months after my 10 years cancerversary. I had to have surgery and then it was recommended that I go through 6 months of adjuvant chemotherapy. My new oncologist never brought up fertility preservation before chemo, so I did. So I was on a mad mission to find out my options for freezing my eggs before I got pumped with all the chemo poison. I went to two fertility specialists, the first one was ready to freeze my eggs and my insurance would have covered most of the fertility procedures he would perform but there was an issue with the facility and cryobank that the doctor had admitting rights to. I went to a second fertility doctor that worked with FertileHope but that doctor brought up the issue that if I had a genetic syndrome (I have tested negative for Lynch syndrome but the evidence says otherwise) that the hormones I would have to take could possibly raise my risk of breast cancer and I was already dealing with issues of “probably benign” results from my mammograms (like two cancers weren’t enough!). Also at that time I just turned 36, and the second doctor said even if he harvested my eggs the odds of them being viable was not looking great (freezing unfertilized eggs is still a bit dicey)…I was already in debt and even though they got all of the second cancer, the research on small bowel (its very rare) is scant and the statistics of surviving stage IIb small bowel cancer past 5 years is only 35%. Do I want to be a single mother, who is in debt and may not live long enough to see a child grow up? Do I want to potentially pass along bad cancer genes to a poor innocent child? Not to mention I was getting pressure from my family and my oncologist to not delay chemo even further. So I didn’t harvest my eggs. I have been done with chemo almost 9 months now and I don’t seem to be in menopause (no hot flashes), but the damage is probably already done.

    I have given up on ever having a child of my own and I probably won’t ever adopt either because I don’t want to be a single mom and I am still dealing with the after effects of the chemo. But I should say that adoption is not out of the question. The nurse case manager from my insurance company did tell me about some adoption agencies that will work with cancer survivors. I also found a bunch of links online about these agencies as well.

    You are definitely not alone! I have found talking or venting with other survivors does help a bit. From my experiences so far, it’s like any other loss….it will never be 100% great like it once was…at times it feels like it gets worse but eventually the pain does dull or stings a little less as time goes on. I think the biggest thing that has helped is knowing that I am not. When I was 25, the only support I found was some online forum for women (mostly in their 50’s and 60’s) who had hysterectomies for various reasons not just cancer but most of them already had kids or were grandmothers too. They were nice women but their experiences were totally different from mine. And I love my friends and family and I know they mean well but they didn’t get it and still really don’t. Although my second cancer experience has been a lot rougher (both physically and emotionally) then the first time but at least this time I’m not alone ….that does make a big difference.

    So feel free to vent away anytime. You are more than welcome to contact me anytime. I still struggle with the whole thing but I just keep reminding myself that just because cancer took away some aspect of our lives doesn’t mean we have to give up hope on the future, our interests, passions or experiencing happiness…we just have to redefine things a bit.

    Hang in there!
  • My fiance and I never really wanted kids, and so when I was diagnosed with leukemia we didn't think twice about fertility options, we just wanted to treat the cancer. Three months into my treatment I went into early menopause and it just kinda hit me WOW, I may never have kids. It's a tough pill to swallow. I find it hard to associate myself with friends that have babies or toddlers, like I'm some kind of bitter old crone, and I'm twenty, lol.

    It's hard to think that I'll probably never have my own kids, but every day it gets easier to consider the alternatives. Though, that's not to say you won't have your moments, and ya know what? Screw the world, you're entitled to them ;p
  • Doctors are thinking about a hyst with me too. Basically they have said they want to wait as long as possible before they do, and that's all they've said. Because I tested positive for Lynch Syndrome (MSH2 gene) I pretty much have given up on having children. I don't really have any advise to give, but did want to tell you reading your post made me realise maybe I'm not as alone as I thought I was in my worries. Thank you.
  • Ugh...I can relate. I was 22 when I had my hysterectomy. I had irregular periods and was basically hemmoraging to death. They performed a D&C and sent everything in for biopsy. I wasn't supposed to have cancer. According to my OB/GYN, that kind of cancer only happened to older woman. Shock of shock....he was wrong. I was very positive about it. I lost my dad to Pancreatic cancer and lost an aunt to Ovarian cancer, so I was just going to have to survive. And I kept that positiveness until the nurse tried to sedate me...then I lost it. How had I gotten here? What happened to my options? Why me? That feeling doesn't really go away. It can be back burnered, but it doesn't go away.

    And now, I have several pregnant friends. Married, happy and glowing...and that little part of me hates them for it. And then I hate myself a little more for feeling that way. It is hard to go to baby showers. It is hard to discuss the joys of parenting. And being a teacher means they all want my advice on things. I am thinking of adoption. It is hard for a single person though. I haven't found anybody yet, but I don't want to wait for that. I have also thought about being a foster parent too. I know there are options, but it sucks hardcore that so many have kids and mistreat them or give them up. I would give anything to have my own kids.

    You are definitely not alone. I am thankful to be able to share my story and hear the rest of yours. It helps my keep that little voice at bay. Not always...not even close, but it does help. Vent whenever you want, and if you want to talk more about things...please let me know.
  • This is a sucky road you're on so feel free to vent as much as you want.

    I was 26 when I was diagnosed with NHL, three months before my husband of almost three years were planning to start trying to get pregnant. I had an aggressive form and the doctors said there was absolutely no time to try and bank eggs. I didn't have time to deal with it - I was focused on getting the cancer kicked out of my body. Toward the middle of my chemo I was given a Depo shot to turn off my period since my platelets were dropping so quickly. My period never came back - whether due to the shot or to chemo or both - who knows? I got my news of remission two months later and the BAM - I had to deal with my infertility. I cried endlessly for a very long time. We looked into donor eggs, surrogacy, but then finally decided on adoption. Almost three years to the day of my remission - my gorgeous son was born. He was placed in my arms a few weeks later.

    I have been on that road and even though I have so much joy and love in my life with my son - there are still times I look at pregnant women with envy that they could carry their child. Baby showers are bittersweet (I did have a Welcome Baby Shower where everyone got to meet my son :-) And I have to walk away when friends complain about their pregnancy pains (they should try a few bone marrow biopsies and a mouth full of sores due to chemo). But then I look at my son and life is good again.

    If you ever want some info on my experience I love telling my story. My adoption agency works with cancer survivors, singles, same-sex couples, whatever. So if adoption is ever an option for you there are agencies that would love to make you a parent.
  • CareyCarey Community Member
    bethyr0ja;263 said:
    I was diagnosed with adenocarcinoma of the cervix this May. Tried a cone biopsy, and the margins were questionable for invasive cancer. I'm single, with no prospects...just yank the whole thing out. So in July I had a hyst. I was doing well with it until they wheeled me out of the pre-op area towards the operating room. I balled my eyes out the whole way. I've been "dealing" with it ok since then, but every once in a while it hits me, harder each time that the previous one.

    This time of year is normally hard for me, but this year it was compounded. It started mid-Nov with my birthday (single/alone/no kids), then went to my brother's wedding (single/alone/no kids), to Thanksgiving (etc), Christmas (etc), New Years (etc)...you get the idea. Throw on top of it the fact that I'm never going to have kids, and I can't even donate my eggs because the fertility clinic will not take them, I'm feeling peachy keen.

    I work in emergency medicine, so I'm used to dealing/not dealing with things on a regular basis. I can do a shot gun to the head and then discuss it over pizza. When does this get better? I'm tired of feeling all alone on some isolated island that no one is ever going to understand. Grrr!!!!!

    Thank you for letting me vent. I'm at work right now, and I've been up since 7:00am yesterday, so I think a lot of my crankiness has to do with being overtired.
    I can identify with what you're going through as far as stressful job and dealing with cancer. I'm in law enforcement and have seen and dealt with some pretty disturbing things, but after I returned to work, even the little things seem to really be getting to me. I was reassigned from patrol to investigations while I complete my recovery. Now simple things are disgusting me. I feel like I might not be able to be the protector I used to be.

    As far as fertility, I'm going to overstep my bounds a bit and say while I was lucky I got to bank before my chemo, it was the second most humiliating thing I've ever had to do. And on top of that it was like "You have cancer. Here's your appointment at the fertility clinic to bank. You begin chemo on Monday." This was on a Friday. The last thing on my mind was having kids and as of now, I don't even want to be around other people's kids much less have my own. I wish there had been more time to discuss the different options and better information so I could have made a better decision. This is definitely an area that is lacking in cancer treatments for everyone.

    Sorry that was really rambling and disjointed.
  • Thank you all for your replies. In addition to working in emergency medicine, I also work for an OB/GYN. (Being single means you have to work 2 jobs to afford anything). I've been doing ok with all the GYN patients, as well as the majority of the OB patients. I do have a problem with one patient, though, and I feel horrible about it. She and I were friendly during her last pregnancy (professional only), and she has just started coming back to the office for her second pregnancy. She has the most beautiful redheaded baby girl who will turn 1 this spring. I either want to, or actually cry, every time I see her baby. I can handle most babies, but when I see a redhead, I lose it. I had always wondered if my kids would get my hair, my weird double-jointed fingers, the freak webbing I have between 2 of my toes. Now I'll never know...
  • I always knew I wanted kids. I worked with kids a lot. I was a nanny for 5+ years to one family so I got just a hint of raising kids. The prospect of not having my own kids was what upset me the most about cancer and I almost opted out of further treatment until I felt like I was scared into it. People tell me I can adopt, I know that, but I just feel sad that I won't be able to see bits of ME in them.
  • Ever seen the movie "Trading Places'? People may look physically the way their genetic makeup dictates, but the way people think and act is much much more dependent on their environment. Case in point, while you may not be able to pass on your beauty to someone, you can pass on your thoughts, ideals, integrity, honesty, responsibility and all those qualities that make you a good person. I think that is much more important than having the same color eyes. Don't pass on raising kids just because you can't have them yourself. Take that as an opportunity to raise a child into a good person who, otherwise, might grow up in a bad environment. This world needs more good people...
  • samsixxsamsixx Community Member
    bethyr0ja;263 said:

    This time of year is normally hard for me, but this year it was compounded. It started mid-Nov with my birthday (single/alone/no kids), then went to my brother's wedding (single/alone/no kids), to Thanksgiving (etc), Christmas (etc), New Years (etc)...you get the idea. T

    Thanks for saying that, I feel guilty hating others' happiness, but it drives me nuts when it's splashed all over the place. It seems like everyone's happy, or has no excuse not to be damnit! Lol - from my POV. They're all pregnant with rings on their fingers. How wonderful. I mostly feel too miserable to do anything about this.