Looking for similar stories. Experience.

AshleyWF
AshleyWF Member Posts: 46
in Brain Cancer #1
My boyfriend was diagnosed with grade 2 Oligodendroglioma. He had surgery a month and a half ago.
Location is Parietal Lobe, more centered. He is Left handed.
After surgery we found out he was only partially removed, as a smaller part of this tumour has branched into the center, a place in his brain used to communicate with each side, so this is inoperable.
He has received no treatment after surgery, they are advising against this. Because it is grade two, slow growing, they would like to watch and see what it does, then when needed, radiation. So this is them basically saying wait until spreading occurs, and when things look grim, radiation to extend his life? Correct? The doctor also made us aware, this usually does come back, and at a higher grade. So not only are they going to wait and let what's left grow, but do nothing about the area removed, and wait for a higher grade to grow back?
He does not have the gene deletion we had hoped for, which would have made his cancer more responsive to chemo therapy, from what I understand.
He has not suffered from seizures, but was made aware of this through really bad headaches. Since surgery the headaches are gone.

Does anyone have experience with this cancer? Or if not this cancer, the same location? Has anyone else been told they are not going to receive treatment after? What were your feelings on this? Does anyone with experience in this believe, no treatment means things look pretty grim?

We have a second opinion booked for the 31st of this month. Doing nothing at all does not sit right with me. Someone had mentioned due to the location, it was almost worth trying surgery due to the effects radiation could have.

Once again reaching out, hope someone has some answers.

Love and prayers sent to all of you!

Comments

  • palmyrafan
    palmyrafan Member Posts: 396
    #2
    Waiting Game
    Hi there and welcome to the boards.

    I have multiple meningiomas which are supposed to only be on the meninges (lining) of the brain. But that rarely happens. Mine have invaded 4 of my sinuses, eustacian tubes, wrapped around my carotid artery (considered inoperable), wrapped around the left optic nerve and the optic chiasm. They are also fused into the left jaw bones in my face. Other than that, I'm doing pretty good.

    Seriously, what you are talking about is called Watch & Wait and is a normal path for doctors to take especially for patients who have either been newly diagnosed or on patients where they are more concerned about what the treatment options may do to the patient.

    For example: I had surgery in '94 and radiation in '96. Between 94 and 96 I was on W&W (watch & wait) where the surgeon and the neuro radiologist could keep an eye on the tumors, I could grow some scar tissues (important especially since they couldn't risk leakage of brain fluid) and to decide that I actually needed and/or could benefit from the radiation. We're all still not on the same table about that one. In 1996 it was determined that I could benefit from the radiation by burning the edges of the tumors (that they could see) and HOPEFULLY stop the growth of the tumors. Well, it stopped the growth of the tumors they could see but obviously they couldn't see all the tumors and those are the ones that have spread and grown back.

    Also, be aware that sometimes a W&W approach is more optimal for the doctors/specialists because sometimes, depending on the tumors, location, grade, size, etc. radiation can actually speed up the growth of the tumors. It is not unheard of.

    I commend you for seeking a 2nd opinion. I would also make sure to do all the research you can between now and then. Remember, there are no stupid questions, just unasked ones. Make sure you take notes or a personal tape recorder with you to get all the information you can.

    Be sure to check back on these boards often. There are a lot of really great people on here who have an abundance of information and knowledge and are great at helping each other out.

    Hang in there. You're both in my prayers.

    Teresa
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #3
    Hi, Ashley.
    Hi, Ashley, it's me again...David's mom. My son has an anaplastic oligodendroglioma--that's a grade 3. I've written to you before. Please forgive me if I repeat myself...I think the stress makes it harder for me to remember stuff.

    I also think it's a very good idea to get a second opinion. But please let me warn you---that can be tough. We got second and third opinions and it created a huge amount of stress since the doctors didn't agree and had very different opinions about treatment options. However, I feel like it is still very important to get a second opinion. The benefits of getting a second opinion far outweigh the risk of conflicting opinions. We ended up getting a third opinion and that one was the tiebreaker for us.

    I have also heard of other cases where the doctors took the wait and watch approach. I correspond with a guy who has a grade three astrocytoma and he had surgery with a partial resection, radiation, and temodar. His NO (neuro-ocologistt) thought he saw something on a follow up MRI and wanted to operate again. The guy got a second opinion from Duke and that NO wasn't so sure that it was tumor on the MRI. Duke had the guy stop taking Temodar and they are doing the wait and watch. It's been over a year and there hasn't been any changes in the MRI and my friend is doing great. He just got accepted into med school.

    David had brain surgery two weeks ago and we just found out a little about the pathology report. David's tumor did NOT go up a grade. I was very fearful that it might have gone up. They told us that what they removed this time (his second surgery) was a combination of tumor, cyst (I guess cysts are common with brain tumors), radiation necrosis, and even some chemo after-effects. I didn't know that someone could have all that going on within two years. I thought that would come many years down the road. The amazing thing is that David is still 100%. He thinks his short term memory is not as good but all the tests they do, he passes them without any problem. His main issue is that he still gets bad headaches. It concerns me that they removed stuff caused from David's treatments. I don't think I ever knew about the possibility of his treatments causing issues that would be removed by surgery. Maybe when you get a second opinion, you could ask if the doctors want to wait with Jordan because they want to avoid causing problems from treatments? Maybe the risk of problems from the treatments is higher than the risk of the tumor starting to grow?

    I don't know if my telling you this is any help. I'm just trying to share our experiences since your boyfriend and my son have the same type of tumor---except of course, my son's is a grade higher. I really want to be able to help you somehow...you and your boyfriend are so young and I hate for you both to have to go through this. I really wish I could say things that will help you.

    In your post, you said that would they watch and wait until things looked grim, then do radiation to extend his life. I don't think they will wait until things look grim. I think they will jump on it at the slightest change that looks suspicious. Maybe they don't want to use treatments before they really have to, because if it does get worse down the road, then you've already expended your treatment options. Except in rare cases, radiation is done only one time--only one course of treatments. If you use chemo too soon, could the tumor begin to develop a resistance to the chemo before you even really needed to be using chemo? Chemo and radiation are hard on the body...if you don't have an aggressive tumor present, you might not want to use an aggressive treatment if you don't have to. All good questions for your doctors...

    Please keep updating this site. I think of you often and pray for you and Jordan. Stay strong---I know you will!
    Love and blessings,
    Cindy

    PS I re-read your post---and I do not think that no treatment means things look grim. Not at all, not in Jordan's case, with a grade two. I think no treatment means they do not expect it to grow for a while and treatment is not required right now. If he had an inoperable GBM and your doctor said they could not treat it at all, then that would be grim. Jordan has a lot of options....waiting first, then, if necessary, different treatments--chemos, radiation, even possibly another surgery if that became necessary. Hopefully it wouldn't become necessary, but it could be another option.....in David's case, we were relieved that a second surgery was an option....
  • CatherineSch.
    CatherineSch. Member Posts: 14
    #4
    Son has decided to have 2nd resection!
    I posted a reply yesterday, but not being tech savy, sent it to myself, from myself!
    Have patience.
    So check out the chat, which was intended for you, and explains, John's turn around. He called, to tell us about conversation with Susan (NP), of Neurosurgeon, and he's committed, but scared. I can hear that, he fears losing his job, being out of work, and every gloomy scenario you can imagine. I assured him we will find a solution to every "roadblock", if any should appear. We would love John to move back here, as proximity to hosp., Drs, etc. and just being closer to be there for him, and his gal.
    Its so difficult trying to comfort, and encourage, and really NOT being in their reality. He said once, "you have no idea", which is true in the big picture. I'd have difficulty with the MRI machine, and he does it with aplomb!
    So, have hope, and perserverence. My daughter has
    ordered GRAY bracelets ,a Face Book project for Johns friends and family,for support and encouragment, and hopefully will be received by John, as a tender, positive act.) I think its warm and loving, and wonderful.

    Hang in there, and know how good it feels for all of us to have this connection. My friends and family are there, but this particular network, is divine in a way only it and its members can provide. Thank you.


    Catherine
  • CatherineSch.
    CatherineSch. Member Posts: 14
    #5
    Son has decided to have 2nd resection!
    I posted a reply yesterday, but not being tech savy, sent it to myself, from myself!
    Have patience.
    So check out the chat, which was intended for you, and explains, John's turn around. He called, to tell us about conversation with Susan (NP), of Neurosurgeon, and he's committed, but scared. I can hear that, he fears losing his job, being out of work, and every gloomy scenario you can imagine. I assured him we will find a solution to every "roadblock", if any should appear. We would love John to move back here, as proximity to hosp., Drs, etc. and just being closer to be there for him, and his gal.
    Its so difficult trying to comfort, and encourage, and really NOT being in their reality. He said once, "you have no idea", which is true in the big picture. I'd have difficulty with the MRI machine, and he does it with aplomb!
    So, have hope, and perserverence. My daughter has
    ordered GRAY bracelets ,a Face Book project for Johns friends and family,for support and encouragment, and hopefully will be received by John, as a tender, positive act.) I think its warm and loving, and wonderful.

    Hang in there, and know how good it feels for all of us to have this connection. My friends and family are there, but this particular network, is divine in a way only it and its members can provide. Thank you.


    Catherine

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