Stereotyping OVC cancer

Radioactive34
Radioactive34 Member Posts: 391 Member
in Ovarian Cancer #1
I have been NED for about a year, now. I have been having severe migraines. I had them before the cancer, but the hysterectomy seemed to take care of them. Now they are back in full force and worse.

I normally don't think twice about them. The past couple of weeks, my extremities have started shaking. Not a major shake, just enough that when I hold my husband he can feel it. Otherwise it is not visible. So, that has got me worried.

All my CT's have been of my trunk have and they have been clear. My CA 125 is in the single digits. I have been getting concerned about the headaches, so I called the ONC department here. I described the headaches and got condescended to.....over the phone no less.

"OVC never/rarely ever goes to the brain. I can tell you now this is not cancer related." ARGH, I thought that is a general statement that does not do justice to the different OVCs.

I went into my "My OVC is only classified OVC because it was found in the ovaries. It is a rare subset of small cell lung cancer, yadda yadda yadda." A doctor called me back and decided to schedule a brain CT. I will get a letter with the date.

It maybe nothing. My doctors in the US told me to have a low threshold for anything out of the norm. My particular cancer goes everywhere, especially the brain. In the US, I would have been scanned ASAP. I miss my old clinic...they were the bomb.

Still what worried me about the conversation was the stereotyping. Not all OVCs are the same. Some are really really aggressive. Some are not that aggressive. Most of our symptoms were ignored or downplayed early on. I resent that even now we still have to fight.

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    DON'T WORRY TOO MUCH
    I certainly agree with you, that not all OVCA is the same. And it's perfectly natural to now be so in tune to every ache, pain, new development that we can become anxious about it. I am pleased that they have scheduled this CT to put your mind at ease. But really, my first thought is that since you have a history of migranes, this might very well be the same thing.

    I found out that during chemo it's not uncommon to have previous symptoms disappear. For example, I have a slight case of excema on my ankles, usually only during the winter months. Sure enough, it went away during chemo. My doctor confirmed that it was probably due to the chemo. There are other things that you will notice you didn't 'have' during chemo, and then it returns. So I would say don't worry too much right now.

    My husband had an auto accident years ago. One injury was eye damage that caused double vision. He ended up with severe headaches and vomiting because of it. Now, he also is a migraine sufferer, but he also has cluster headaches which are even worse. Well, they gave him Botox injections in the temples and back of the head. It took care of his migraines but it also miraculously took care of his clusters! He never had one in the year that he was receiving these injections. Needless to say, about 8-10 months after the last injection, the clusters returned. So, hold the thought that these are just your migraines.

    Let us know. Sending hugs and prayers.

    Monika
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    I know what you mean about
    I know what you mean about worrying about things. I too have been wondering about recent headaches I have been getting. In January, I started to notice that it appeared that my peripherial vision in my left eye was blurry - I usually will get the normal "sinus" headaches that are in the forehead, but this headache has been focused around my left eye.

    I eventually went to my eye doctor who I explained this. He sent me to have more further testing. Of course, I passed all the tests, but continued to have headaches off and on. Also, I started to have numbness off and on again in my left leg (which could be caused by scar tissue from my surgeries). I sometimes get eye pain too.

    I had mentioned this to my gyn/onc in June but he didn't think too much of it but at that time I wasn't having the numbness in my leg.

    In October I ended up with swollen lymph node on the left side of my neck, along with the headache aroun the left eye area. Was put on steroids and antibiotic which took it away but afterwards still had a few headaches. This really made me nervous about the whole thing.

    Just saw my gyn/onc on MOnday and mentioned the stuff and although he said it could be sinus, etc., just to be on the safe side he ordered a MRI and a MRA.

    Since I got the scrip for the MRI, I haven't had any symptoms. Now I am wondering whether I am just a "nervous nellie".

    Although my initial diagnosis was endometrial adenocarcinoma, they found it on my ovary too and was never able to determine the original origin and therefore treated me as ovarian.


    SHAKING: On another thing, with regard to your shaking. I had the very similar symptoms after I was done treating with chemo. It feels like you are shivering, but it ends up being more like VIBRATING. Your whole body vibrates and it feels really weird. It is my understanding that this is caused by the nerve ending cells rejuvenating and recovering from the chemo. It does eventually goes away. Mine did, anyway. Kinda makes sense.


    My best to you.

    Kathy
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #4
    Rare
    How dare they be condesending to you ! We already have a 'rare' diagnosis being told something else is rare is not much comfort. That being said everything will most likely turn out okay for you. My doctor does a head to thigh ct/pet scan every time, I'm glad you are getting the brain scan you need peace of mind.
    Colleen
  • leesag
    leesag Member Posts: 621 Member
    #5
    Ovca rarely/never goes to the brain....true...but it does!
    Tell your doc, that you know someone personally who had stage 3c ovca that mets to her brain less than a year later.

    It IS rare, and ALMOST never happens, but it does and if it eases your mind, have the mri done.

    Leesa
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #6
    I do feel better knowing the
    I do feel better knowing the CT is set up. I am getting regular checks on the systems affected by the cancer and chemo. It is difficult because the issues after chemo are worse than the original. I really do feel worse now than prior.

    The migraines are normal for me. I have gotten so used to the migraine pain that the shaking came out of nowhere. The CT will clear things up. The waiting for the worst is an utter pain.

    I do my best to live each day without fear of the cancer coming back but somedays it does get the best of me. Whenever my body does something new, it brings weariness and wonder about what I maybe missing.

    I know that is a crappy way to live, but brushing it off or dealing with things "normally" is what got me here. This feels like a horrible catch 22.

    This is cyclical for me. I do pretty good for long periods and then the fear pounces.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #7
    leesag said:

    Ovca rarely/never goes to the brain....true...but it does!
    Tell your doc, that you know someone personally who had stage 3c ovca that mets to her brain less than a year later.

    It IS rare, and ALMOST never happens, but it does and if it eases your mind, have the mri done.

    Leesa

    You gals were right. The CT
    You gals were right. The CT came back clear. They said that I should consult a neurologist for the shakes. They are putting it down to chemo damage. :) I am happy with the results. I am frustrated by them because it is just another thing to chalk up to cancer, but still it is better than it could have been.

    Thank you for your support. Hugs all

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