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Grade 3 astrocytoma in 28 year old

chancesuka
Posts: 6
Joined: May 2010

My son was diagnosed in March after having a seizure. He has had surgery which removed 95 percent of the tumour from his left frontal lobe. No bad effects from the surgery. Has had 6 weeks of radiation along with chemo (temodar). He will be starting 6 months of chemo in July-5 days on then 21 days off. He has a lot of extreme tiredness and has trouble remembering to eat some days due to a lack of appetite. We are trying to deal with all of this in a positive way but some days are hard to face for us all. I realize this is normal. He is living his dream right now- to have a little log home on a small 4 acre lot and for this we are grateful. The hardest thing for him is that his friends have all but disappeared. I do not understand. My husbands family will not even raise the subject. Just looking for some answers and wonder if this has happened to others with this type of illness. Are people afraid? Do they not know how to approach the subject? I guess cancer is truly a lonely disease.

PBJ Austin
Posts: 347
Joined: Mar 2009

My 26-year-old sister also has AA3 in the frontal left lobe. It is true that some people don't handle serious illness well, but they do still care and they don't mean to make things worse. I think they are afraid of saying the wrong thing, or maybe they find it all too depressing and they don't want your son to know they are hurting for him. It is sad indeed.

Is your son part of a support group in your area? Maybe he can meet some new friends who will relate to his situation better. Another suggestion is to reach out to the old friends. If your son is comfortable with this, let them know it's OK to visit and to talk about the cancer.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

my 12 year old daughter was diagnosed in March also and I understand what you are going through. My daughters friends have all been there for her but mine are a different story. Friends that I have had for many years are avoiding me. I believe that they are afraid. Afraid of what they might say, if its right or if its wrong. They may also be afraid that they won't be able to handle it when they see my daughter or myself. Even if all your friends, family are around it still is a lonely disease because nobody can truely feel what you or your son are feeling unless they have gone through this. I will pray for your son and for you also.

oystertaco24
Posts: 6
Joined: May 2010

I'm 26 with a grade 3 AA as well, diagnosed and had surgery in February. I've undergone everything it sounds like your son has - six-week Temodar and radiation, loss of appetite, nausea, fatigue. I just started my first five-day round of Temodar (they call it "maintenance" but it's three times the dose I was on before) last week - it was not fun, but it didn't result in anything I haven't exactly experienced yet.

I don't want to say I've lost friends and other contacts since diagnosis, because that isn't necessarily true. But things have gotten awkward with some, and it's taken some a long time to "come around" and realize that yes, I am OK, I'm still here, and I'm still the same person. I don't need to be treated differently, I can do most of what I could do before, and if I can't, I'll let you know. Cancer is a difficult thing to accept - cancer is also a reminder of mortality that hits a bit too close to home when someone you know is faced with it. So yes, I think there is a lot of personal fear involved, too. If I, a healthy young adult with so much going for her, could get stricken with a rare cancer, maybe they aren't quite so immune either.

One thing that really seemed to help (not that I hope you ever have to go through anything like this again!) is that my husband put my closer friends, some co-workers, and family (once I'd told them) on an email list and sent them updates throughout the whole process, from the first appointment with the surgeon until I started radiation. Many updates included strong assurances that I was doing really well and that I was still mentally intact, so people kind of had an idea of my condition before they encountered me again and knew more of what to expect. Also, they knew that we were fine with talking openly about this (which I absolutely am).

chancesuka
Posts: 6
Joined: May 2010

Many thanks for the responses. I was pretty sure this was common but find it odd. Just a simple"thinking of you" can make you feel like you are not alone. After posting today we ended up in emerg- my son took a seizure- we are hoping it was just a borderline dilantin level and not post-radiation swelling.

This is certainly an experience which has changed all our lives. It has brought my family closer. It is heartwarming to see my son's siblings rallying to his side. I have learned that random acts of kindness from complete strangers really do happen. I have learned to be tolerant of others because everyone has a story.

Thank you again for all the kind words.

rokaren5
Posts: 14
Joined: Aug 2010

Hi there,
I'm new here. Level III glioma found on a fluke. Almost no indicators. I had some odd, mild spaceout and friends pushed me to "just get it checked out". I aced the physical exam. The neurologist truly expected to see a "normal" brain on my MRI. Well it was so not normal. Surgery took out a chunk of right temporal lobe. I don't have a well formed "tumor" It's just abnormal cells throughout my brain. Weird. I have had
I've just finished week 2 of radiation chemo combo.
Anyway, my point to responding to you is this. There is a website called "caringbridge.org" I love it. I can post pictures and I write in a journal as well. There's a guestbook where my friends can write their support to me. I LOVE it. I read my guestbook and I cry and it feels so good. I'm wide open and honest in my journal. I write it like I'm talking to my best friend. I think it's a good way to connect because there's that element of distance on the computer, but also being wide open to those I love and love me.
Best of luck,
Karen
sorry I'm really really new at this.

3Mana
Posts: 829
Joined: Aug 2010

Hi,
Just wanted to say that I hope you all do well and keep fighting this darn disease!
I had a Caring Bridge for my husband, who has since passed away from lung cancer. It's such a great site, cause you can update the journal every day and don't have to make phone calls to explain everything. He also enjoyed reading the guestbook every day. He had lung cancer which had spread to his brain & spine and only lasted 2 months after diagnosis. Miss him so much.
So hang in there & don't give up!! Carole

amy79a
Posts: 2
Joined: Oct 2008

I also was 28 when I was diagnosed with AA3. I'm now an almost 3 year survivor. From the day I was diagnosed, I was open and upfront with all of those around me (except a few people whom I didn't want to worry excessively about me). I spoke frequently about what was going on and answered all questions that were sent my way. I also started a blog and email group so that I could keep friends and family updated on how things were going. This helped keep the doors open so I didn't feel as lonely AND even helped me meet some really wonderful people that really do understand what I'm going through.

I have found that people are reluctant to bring up the subject but if you can broach it first, they relax very quickly. When I can tell someone is uncomfortable talking to me, I usually try to say something funny that slips in the brain cancer. One of my favorites being "I need that like I need a hole in the head... oh wait I've already had that..." Usually that will open the door and you'd be surprised at what people are holding back.

I have also found that the attitude you have about it really makes a difference as well. The week after I had surgery, I stopped by my place of employment to visit because I knew a lot of co-workers were very worried about me. My only issues other than the nice stitches in my head were side-effects from the steroids that were causing my knee joints to falter. I had to hold onto my husband's arm (a bit like a romantic movie where the guy puts out his arm for the young lady) as I got out of the elevator and a few of my co-workers were waiting to greet me. I looked at them, smiled, and with a shrug of my shoulder I told them that there were some benefits to having brain surgery. Everyone of them smiled and while most were a little scared of hurting me if they gave me a hug, most of them gave me a hug or a pat on the back saying how glad they were that I was doing so well. Had I exited the elevator complaining, I'm sure they would have continued to be tense around me and probably would have been that way for some time. I guess what I'm saying is that whether you realize it or not, the subtle (or obvious) signals you send dictates how people are going to react.

Like OysterTaco, I took everything with a very positive attitude. I took it almost to the point that many people worried that I was in denial about it. However, if they talked to me they realized that I was not in denial at all but rather acceptance. I learned and read everything I could both on the good and bad sides of brain cancer. I saw both sides of the survival scope and chose to accept that my life was in God's hands but that I would do my best to convince him that I still had purpose here.

I'm at three years since discovery, had 90% resection of right frontal lobe tumor, completed 60 GY of fractionated radiation and other than a bought with seizures in 2009, I live my life as if nothing ever happened. There is a lot of truth in what they say about attitude makes a world of difference. I don't know where I would be without all the support and prayers from my friends, co-workers, and family but I do know that I would not have had it if I hadn't been so upfront and willing to discuss as I was.

I'm not sure if there is anything in this that can help you, your son, or friends/family deal with this but I wish you the best. If you or your son would ever like to talk my email is my username at gmail.com.

j_waffles
Posts: 22
Joined: Jun 2010

27 year-old here with a grade 2 Oligodendroglioma. I had 85% of the mass removed when I was almost 26. It's been slowly growing since, so this month I started my first round of Temodar. Expecting to be treating it for at least another 2 years. I don't plan on radiation until I'm old and wrinkly.

My dad was 38 when he was diagnosed with a grade 4 OligoAstrocytoma. They told us to expect his death in another 3-5 years. He had surgery and 8 months of harsher chemo (PVC), but no radiation. Currently, he is 52 and runs marathons. His secret of success? In addition to the afore-mentioned, he saw a holistic doctor who changed his diet and gave him complementary treatment methods. I'm currently following the same diet (vegetarian for the most part / no processed sugars) and continuing to work out as much as I can tolerate while on the chemo. I plan on doing energy therapies and other eastern medicine techniques to help.

Although I'm not a grade 3 AA like your son, I still continue to keep a social life. I downplay my condition, so aquaintances see me as me and not as some girl with a brain tumor. It sometimes can be hard, like when someone wants to buy me a drink or asks why I'm not driving... do I really want to tell them about my cancer? It does run the risk of it getting awkward. It almost always shocks people, since I certainly don't LOOK like someone with cancer. However, my laughter and positive outlook on my future has made quite a few of my friends respect me even more for it.

My biggest supporter through my diagnosis was my mom. She held me tight and said "Just because you have cancer doesn't change the fact that you're still my wonderful Jenny." She passed away only a couple months ago from a sudden heart attack, but I will keep that mindset forever.

Your son isn't alone. If he's feeling a disconnect from non-cancer friends, there are many ways to meet others who know what he's going through. Check out this site: http://www.imermanangels.org/

chancesuka
Posts: 6
Joined: May 2010

Good points. I believe part of the issue right now is that he has been recovering from the surgery and dealing with treatments for 6 weeks. He is now struggling with his dilantin level-just got home after dealing with the emergency dr.s for 24 hours. Will now be followed by a neurologist so that is a positive.
It is indeed a scary disease and I do believe that people are afraid to approach the subject. Hopefully he will be able to start increasing his social life once his physical health is under control. So nice to hear about your Dad. Nick has changed his diet TOTALLY and hearing that it may have helped your Dad is encouraging. He eats no sugar, eats mainly organic foods and for the most part has become a vegetarian like yourself. He wants to feel that he has some control over his own body and do everything in his power to fight the fight. He too, does not look ill-unless he takes off his hat and shows his patchwork .
We will check out the websites suggested.
Thanks again for the encouraging support. Best of luck.

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lawslegal
Posts: 39
Joined: Aug 2005

Hi,

My son was diagnosed with an astrocytoma when he was 13. He is now 19. He was blessed to have his friends stick around through everything, however, that is usually not the case. I do believe because people are afraid of the unknown. It is sad. This is the time he will need his friends the most. I am sorry to hear this.

Laura (Michael's Mom)

chancesuka
Posts: 6
Joined: May 2010

So nice to hear that your son is doing well. The only thing one hears after having an experience like this is "2-3 years to live." Guess thoses are just the statistics. Nick has been blessed with an incredible few neighbors who , although he was brand new to the area, have taken him under their watch. There are truly some angels out there.
Best of the future to you and Michael.
June

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bodyenergy
Posts: 2
Joined: Aug 2010

Can you give a status on his condition.

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