Anyone have chronic cancers?

I get so overwhelmed managing all of my cancers on top of all my other health issues. Not to mention working full time and being on my own since no one wants to date someone with cancer.

I'm 37. I have leiomyosarcoma ('05), chronic cutaneous t-cell lymphoma ('14), pre-cancerous cervical and pre-cancerous vulvar. My cancers are not going to kill me but they also are not going to go away. Every day I'm learning to live with my cancers. Some days I think I have it all under control and no big deal. Other days, I feel like my life is crashing in and I can't stay ahead of it all.

Does anyone else have chronic cancers? I don't know anyone who does. It would really help to know someone out there "gets it".

Comments

  • 11 Comments sorted by Votes Date Added
  • I have metastatic melanoma... been stage 4 now for over four years and in and out of treatments the entire time. Currently on break but I expect in August I will likely be starting my 7th different treatment. It's so tiring at times! Yet I am too stubborn to give up so I am in this perpetual no man's land where I am alive but chained to my medical issues - so far treatments have sorta kept my cancer in check but nothing has made it go away either. This is my "new normal" but I do my best to enjoy the small things in life like pretty flowers or my cute pup.
  • kam0223kam0223 Community Member
    Hi Mishanne, thanks for answering. As I am not happy that you are going through your journey, I am happy to meet someone who understands. It's little things like when I have to choose from a scroll box what type of cancer I have and multiple cancers is not an option. It makes me feel like I'm the only one when I know I'm not.

    You nailed it when you said you are alive but chained to your medical issues. Yes! That's exactly it. I try to live my life as uninterrupted as possible but the truth is it's a major clusterf*ck of balancing my medical issues and the rest of my life.

    I'm stubborn too and don't want to cut back my life at all. I look at it as letting my cancers win. I've already given up all of my physical/active hobbies bc tumors have prevented me from being active. I'm still trying to accept that years later. It's been hard to find things that I enjoy to replace them. You're absolutely right, the little things count. I have pretty flowers and a cute pup to make me smile.

    Sounds like you've been through the ringer with 7 treatments. I lost count how many surgeries I've had. Just had a surgical biopsy done and I'm waiting for the results. I'm also waiting to find out if I can have a really painful tumor removed. It's been there for a few years and we thought it was a muscle issue bc it didn't show up on imaging.

    What does you next treatment entail?
  • Not sure yet what the next treatment will be... likely a PD-L1 drug potentially combined with something else in a clinical trial. Scans end of this month and I see the doc start of August to decide but since there are mets just under my skin I can see and feel I know my cancer hasn't magically disappeared yet! Waiting is the worst.
  • kam0223kam0223 Community Member
    They have told me that my cancers are not going to go away. They said they probably won't kill me, but I have to manage them for the rest of my life. Could be worse. Have they told you there is a possibility of your cancer going into remission?
  • Nope, we don't talk about that lol. Realistically I understand why the doc wouldn't want to throw statistics at me since all the data is at least 5-10 years old and melanoma treatments have been progressing rapidly lately with all the immunotherapy... The pathology reports state I have "innumerable" mets in various locations though so I figure odds can't be too stellar.
  • kam0223kam0223 Community Member
    Totally get it. So you'll keep starting clinical trials as they become available. At least they are keeping it in check. How has it effected your quality of life?
  • kshaykshay Community Member
    I'm 28 and was diagnosed October 2016 with Primary Cutaneous Marginal Zone B-Cell Lymphoma. My doctor told me that of all the types to have, this one "isn't so bad" as it's not life-threatening. There is currently no cure, so she told me to think of it like living with a chronic disease. I haven't had any treatment and am on watch and wait, and will likely not need treatment for a very long time, if ever. I find it hard to talk about since the common rhetoric when people find out you have a cancer is to tell you that you're tough and that you can "win". What they don't realize is that it's more discouraging to hear that because I know it's something that I'm going to likely live with for the rest of my life. I have bumps on my arms and shoulders that are unsightly and it's awkward when people ask me if they are bug bites. I usually just say I have a skin condition and leave it at that. My local nonprofit agency that provides support for people with cancer the community tends to focus it's programs on older patients, with support groups and activities in the middle of the day during the week, which is not practical for me to attend since I work full time. I'm with you where I have days that everything is fine, and then there are others where every little ache or pain makes me paranoid and I stress about it. I can't imagine having multiple cancers, since just having one has been stressful enough, but I do understand what it's like being younger and trying to build my life and continue on while dealing with this chronic cancer!
  • To answer Kam - currently I am unable to work due to a combination of fatigue, stomach issues, and pain... mostly if I rest lots I'm alright though. I sleep in my recliner because if I lay down my lungs hurt and if I sit up my back hurts!

    In response to kshay no cancer is good cancer and it also troubles me when people tell me to "be strong" and that I can "beat it". Seems like that's an awful lot if unfair pressure to put on a person and somewhat unrealistic, but I know they mean well.
  • kshaykshay Community Member
    Mishanne - It has been difficult because nobody really has taken my diagnosis seriously, especially since I haven't received any treatment for it at this point. I've been told that I "look normal" so it must not be a big deal. Even though I have days where I feel fatigued and my skin itches terribly. I agree with you that they do mean well, so I just put a smile on my face and continue on.
  • kam0223kam0223 Community Member
    Hi Kshay, I totally get it. I'm never going to be cancer free. Now, that's not to say I'm not "beating it" or that I'm not strong or a fighter or a survivor. But, sometimes I feel people just don't know what to say. When my mom is talking about my cancer to others, she uses the analogy that it's like someone who has diabetes. If they maintain it, take their meds, monitor it and visit their doctor, they should be "ok". And if not, there could be serious problems. This usually puts people at ease a little more.

    I too used to belong to a cancer support community (other than stupidcancer) and they focused a lot on support for older adults or children. However, during the time I was a member, there were enough young adults to start a group. I made one really good friend through that group who I'm super tight with (long distance now) and she was actually the one who introduced me to stupidcancer. It was I2Y at the time! So, I guess that was the silver lining. You never know what's going to come out of certain situations!
  • kshaykshay Community Member
    Kam, I like the diabetes analogy, thanks for sharing! I think I'll start using that in the future when I need to explain it to others :)

    Oh wow! It's great to hear that you've had such a positive outcome despite the situation. As you said, that is a good reminder to try to always find the silver lining in things.