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Don’t understand: reoccurrence within a year

Posted , 4 users are following.

katienellie
katienellie

I had a transphenoidal surgery April 16, 2018. I felt great for about 30 days afterwards and then my symptoms slowly returned but overall, felt 100% better until about a month ago. I started having severe headaches again and my period stopped. My neurologist did a blood test and sure enough my prolactin was elevated (not bad 146). MRI scheduled and my tumor has not only grown back but is bigger than before I had my previous surgery. My scan that I had in December 2018 showed that is was going well and just packing material. My drs. response was that this doesnt make since, my cell division was .3% on my pathology. I have now switched to bromocriptine since cabergoline did not work before. I have a followup scheduled this November to see if it has shrunk. If not, he'll do surgery again then radiation afterwards. Im scared as hell, its now considered macro and is invading my carvernous cavity which is inoperable and somewhat pushing against my optic chaism. Is there anyone out there that has dealt with this same situation? If so what happened and did one med work over the other? Thanks!!

1 like, 7 replies

7 Replies

  • Francie123
    Francie123 katienellie

    Posted

    I had the transphenodial surgery in Feb. 2017. My surgeon removed all but a small part that was left on pituitary gland and it was too dangerous to remove as it could affect hormones I think. My prolactin right before surgery was in 200s, it had been as high as 500 before cabergoline. The day after surgery it was 25 which is "normal" so my surgeon was hopeful. However the next blood work showed my prolactin levels increased in 70s and now it is 140. My MRIs in 2018 and 2019 show that the tumor has not increased or decreased. I can't say I am in the same boat as you but when I go back to neurosurgeon next May I am worried about what he'll say, how long will I have to be on cabergoline and it's not decreasing the size any. I will say some prayers for you and hope your doctor has good news! I know my doctor told me he can't get what was left unless he does an open brain surgery which scares me to death!!

    • barney34567
      barney34567 Francie123

      Posted

      I am sorry for your situation.

      Be aware than even if a tumor grows, it has to get to a certain size for a patient to consider treatment.

      While a tumor that seems to grow is not good news, not all growths have to be treated. Just like not all cancers.

    • katienellie
      katienellie barney34567

      Posted

      Im aware of this. I realize that I may always have this and will need to take medication. I work in a Drs office and see a few patients that have the same condition as I do. I absolutely love my neuro surgeon as well as my endocrinologist. I have the best of the best. Im trying to reach out to others whom have had a second teansphenoidal surgery or a reoccurence to see what their outcome has been and to see if they've had any complications at all or even success stories.

    • barney34567
      barney34567 katienellie

      Posted

      ok then. I understand. Ideally meds alone would solve the problem and there would be no need for reapeat TSS. But we don't always get the ideal.

    • katienellie
      katienellie barney34567

      Posted

      Again Barney im looking for others that are experiencing the same situation. BELIEVE ME, Im very well educated to know what Im up against. Im not the ideal, yes usually patients respond to treatment. Im not a newcomer to this situation and am aware of my options. I have thoroughly researched as well as discussed with my neurosurgeon whats to be happen next. But thanks for information.

  • barney34567
    barney34567 katienellie

    Posted

    I write as someone who had a pit tumor removed, a macro adenoma, but not for the reason you did (prolactin).

    I am sorry for the trouble you're having and suggest:

    1. If you're very happy with your neurologist then go back to him/her for advice;
    2. If you're unhappy with him/her, then find another neurologist ideally working at a teaching hospital;
    3. Do not have any treatment e.g. surgery or radiation until you have discussed the case with a neurologist;
    4. I would NOT rush to another trans sphenoidal surgery (TSS) for yr type of tumor without strong evidence from a neurologist and neurosurgeon that that is the best course of action. This is because as I understand it, repeated TSS is more successful when the aim is to shrink the size of the tumor rather than deal with out of control hormones. Of course in some cases both repeated TSS and medication may be needed.
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