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Waiting is the hardest part

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  • Bones
    started a topic Waiting is the hardest part

    Waiting is the hardest part

    Hi everyone,
    Been lurking for a while and really appreciate the guidance on here.
    My husband has recently been diagnosed with a tumour 90% EC and 10% yolk sac with evidence of lymphatic spread. We feel like we have been thrown down the rabbit hole and now everything is taking so long!
    Got the results last Monday, CT not until tomorrow no results until we see Onc. Urologist referred to a general Oncologist, having read up on here not happy about that so trying to see a Specialist but can't get that appt until super slow Urologist office fax over records.
    Life is on hold until we know what the extent of this is and what the treatment will be .....
    My question is - does everything always take this long? And has anyone else tried to use a different Oncologist than the one their Urologist wanted them to see.
    I think the entire process may be hard enough without dealing with all this nonsense, and supposedly we have good health insurance!
    Apologies for the ranting and meandering .... it's all taking its toll after a month!

  • Davepet
    replied
    Originally posted by SageCreed View Post
    Thanks, I will. I am slightly scared as I am only 22.
    Hi Sage,
    I see you are pretty new here & we don't know much about your situation. Please start a thread telling us about you & your TC when you feel comfortable doing so. We are here to help you if you want us to.

    Dave

    Leave a comment:


  • Davepet
    replied
    Originally posted by SageCreed View Post
    Thanks, I will. I am slightly scared as I am only 22.
    Hi Sage,
    I see you are pretty new here & we don't know much about your situation. Please start a thread telling us about you & your TC when you feel comfortable doing so. We are here to help you if you want us to.

    Dave

    Leave a comment:


  • Va_Dad
    replied
    Bones, I completely understand, I find the worst times to wait is when your waiting for test results.

    Leave a comment:


  • SageCreed
    replied
    Thanks, I will. I am slightly scared as I am only 22.

    Leave a comment:


  • dcnovachris
    replied
    Sage -

    Great decision to advocate for yourself and seek treatment with doctors you trust. I quickly sought out the best doctors I could get in to see and was highly encouraged by how quickly they wanted to address the situation. I was early Stage II (low volume spread to abdominal lymph nodes), but they wasted no time in presenting my options, helping me select a treatment plan, and scheduling me for the RPLND surgery once I had made the decision. As for your Stage III diagnosis, rest assured that the treatment is extremely effective at curing even late stage, high risk disease. Best of luck and keep us updated!

    Leave a comment:


  • SageCreed
    replied
    I decided to go to Sloan in NYC, they don't mess around. They are quick, the doctors near me were not as urgent as I'd wanted. My cancer is very advanced Stage 3, so waiting any longer was not an option.

    Leave a comment:


  • Bones
    replied
    Thanks Dave - really appreciate the calming vibe X
    Like dcnovachris said, it's tough on our personality types to be so passive in the process. I'm guessing there is yet another life lesson to be had from the whole experience x

    Leave a comment:


  • Davepet
    replied
    Originally posted by Bones View Post
    Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods.
    I've never gotten lab results directly from the lab, its always gone to the doc first & he/she gives me the result.

    Waiting is always one of the hardest parts of a cancer diagnosis. Unfortunately, it is quite unavoidable at times. It was about a month & a half from my I/O to my first chemo treatment, with various tests & doc visits occupying some of that time. Some waiting is to be expected & what you are experiencing is pretty normal & will have no effect on his treatment, so my advise is to try to relax & learn about TC while you wait. He will get through this as many of us have before him. There is little doubt of that.

    Dave

    Leave a comment:


  • Bones
    replied
    Thats exactly my thought Casbes! I have to say the Drs have been great, its getting past their receptionists and schedulers that are causing me an issue. No symptoms, thankfully although does need to go and get a dental infection sorted out next week with a specialist. In the midst of all this trying to get a job done!

    Leave a comment:


  • Casbes
    replied
    I totally disagree with waiting that long. Any symptoms of spread? Back pain? Cough? Look up a reputable oncologist in your network and make an appointment. Contact your insurance company and ask them to advocate for you.

    Leave a comment:


  • dcnovachris
    replied
    Waiting was the most agonizing part of the experience for me. My wife and I are go-getters by nature. Once we knew exactly what was wrong, we were able to put a plan together and start kicking cancer's butt. Regarding the oncology referrals, I took proactive steps in this matter and found my preferred oncologists before the pathology was even available. That way, when my doctor was prescribing next steps, I could ask him for specific referrals and make his job easier. I got referrals the morning after my pathology came back and was in to see the first oncologist within 2 weeks. One thing I've learned through this whole experience is to be my own advocate and not settle until I'm happy. I realize doctors are busy treating many, many patients, of which I am just one. Anything I could do to make their job easier seemed to pay dividends. They also seemed to respect me more because I was a patient who was informed, but not accusatory or skeptical of their advice. Being patient is a necessary evil of a cancer diagnosis, but don't be afraid to take matters into your own hands, identify the specialists you want to see, and ask for those referrals.

    Leave a comment:


  • Kiwi
    replied
    Is the site running tonight?

    Leave a comment:


  • Bones
    replied
    Pre op bloods were AFP 89.1 HCG 141. Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods. Seeing first Onc next Thursday, the 'specialist' can't see him until Nov 3rd so the plan is to use him as a second opinion. Pathology showed positive for angiolymphatic invasion so the Urologist has already said 1 round of chemo minimum ..... just really hoping my husband can avoid the op. I guess you hear cancer and think that things will move fast ...

    Leave a comment:


  • Bones
    replied
    Pre op bloods were AFP 89.1 HCG 141. Funny rule here in CA that the labs can't release the results to you for 14 days to allow your doc time to review them with you so still waiting on the post op bloods. Seeing first Onc next Thursday, the 'specialist' can't see him until Nov 3rd so the plan is to use him as a second opinion. Pathology showed positive for angiolymphatic invasion so the Urologist has already said 1 round of chemo minimum ..... just really hoping my husband can avoid the op. I guess you hear cancer and think that things will move fast ...

    Leave a comment:

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