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no support groups in my area?

punkbohemian
Posts: 2
Joined: Jun 2008

(Very) long story short, I was diagnosed and treated for a neuroblastoma about 2 1/2 years ago. I suppose that I am having a delayed reaction to some of the psychological effects of a cancer experience, so I thought that I would look into some local support groups. I looked through the ACS site for groups in my area, but all I really found were breast/ovarian groups. Those probably wouldn't be appropriate for me, especially since I'm also a guy. Anyway, I don't know if there's any other avenue by which I can try to find a more general group in my area. Any advice? Thanks.

TereB
Posts: 288
Joined: May 2003

Cancer usually brings all kinds of emotions in all of us. For some they appear at the beginning and for others it is a delayed reaction.

There is usually a support group almost everywhere for the most common cancers. There is no support group for me because my cancer is rare so sometimes, if we have no problem with it, we join a support cancer group that is not specific and it works since most of us go through similar things, surgeries, treatments, etc.

You can try checking with your oncologist, maybe they have info about support groups for specific cancers. Many oncology Depts. have social workers and they may have information on support groups too. Check cancer centers and cancer hospitals.

Here are some sites in the internet where you might be able to find the information you need.

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. Check their website www.cancercare.org

Live Strong - www.livestrong.org - offers one-on-one support.

Since it was so difficult for me to find a support group, I went to see a therapist who helped me deal with the whole thing.

All the best,
TereB

HANNA668
Posts: 7
Joined: Jun 2008

Hi I am having the same problem. I can't seem to find any support groups in my area. I had a carcinoid tumor which was lung cancer. I had 3/4 of my left lung taken out and since i didn't need chemo or radiation it would not have helped i convinced myself now this happened 6 months ago that i didn't have cancer. Boy was i surprised when i saw it in black and white that I did. I am really depressed, I cry all the time when I am alone. My husband is insensitive, he just tells me to get over it it was taken out and i no longer have cancer. But I worry about if it is somewhere else in my body or what if it comes back. I am really scared so if you want to chat about your experience and maybe you can help me get through mine. Also if you know of any support groups let me know? Hope you have had a nice week?

TereB
Posts: 288
Joined: May 2003

Hi Hanna,

I am sorry you are not feeling good. Most of us who have cancer go thru all kinds of feelings such as fear, rage, depression, etc. All of this is normal, whether if happens when you are first diagnosed, during treatment, or months after your body has healed.

I was diagnosed with a benign tumor in my head about 20 years ago. After a long surgery I thought all was fine but six months later I was very depressed so I saw a psychiatrist for a while. Two years later the tumor grew back and had turned malignant. There is no cure but the tumors grow slowly. I had radiation, I was scared at first and sick because of the treatment. Months later I found myself crying for no reason, so I went to see the psychiatrist again and found I was very depressed and scared.

After twenty years of dealing with malignant tumors (have many metastases) for which there is no cure, only radiation when a tumor is causing too much pain, I can say I am calm most of the time and I am able to enjoy life. I do get very nervous when it is time to go for follow-up tests. After I see my oncologist, I feel calm and ready to enjoy life again. I am able to do this because of the psychotherapy I had which helped me deal with the whole thing and that is why I recommended it to almost everybody.

You don't have to see a psychiatrist if you don't want to, like a did, any therapist, like a social worker, can help. Some people do well with just a support group. I couldn't find one because my cancer is very rare and on top of that I am rare among the rare. Also you do not have to go to a support group for your specific cancer, any support group can help.

When you are sharing your fears and worries with others, it helps you put them in the proper place so they won't bother you.

I listed some places in my reply to punkbohemian where you might find help and support.

I can tell you that is not as easy as your husband says to get over it since it was taken out and you no longer have cancer. I don't know how long ago you had surgery, but usually people go for follow-ups after surgery and treatment, just to make sure all is fine. If you are worried about metastases, talk to your doctor/oncologist. This is why it is important to have the follow-ups, not only to catch something early but also for your peace of mind. Part of your lung may be out and also the cancer but the fear is still there and that is normal.

Many oncology depts. have social workers trained to help cancer patients. Check with your doctor or hospital. They may know about support groups too.

All the best and a big hug to you,
TereB

punkbohemian
Posts: 2
Joined: Jun 2008

Hanna,

That's pretty messed up that your husband is being so insensitive, though it might be how he deals with that kind of experience so I'm not going to judge.

I was diagnosed with aesthesioneuroblastoma, which is a really rare (like, one out of six million, in my case) nerve cancer. I was lucky to not need chemo, but I had a couple surgeries and radiation.

You worrying about having cancer elsewhere or if it will come back is pretty common. As for me, I haven't found a local support group, but another website (www.planetcancer.org) has a pretty active community of cancer patients/survivors that have been really friendly to me. You should check it out. My profile is at http://myplanet.planetcancer.org/profile/Michael20 and you can message and friend request me there.

hosslady
Posts: 12
Joined: Jun 2008

Me either. Closest one is a Gilda's club, and I am unable to drive or AFFORD to drive to it. I just now found this web site, didn't have a PC, and my treatment, I hope, is almost over. Talking to other survivors is SO impt.and I have virtually no one. I live alone, and no familynear.
How are you coping? I go to other support groups, call my sister, and get out as much as I can. Sometimes I just cry. Sometimes I see a counselor. But she hassn't had cancer. They have no clue. You might check with Gilda's club and see if they have a GENERAL support group, you'd be surprised. It's like men are supposed to just bite the bullet. It hasn't "hit" me yet either. I suspect I will do as you are. It's normal. We've been thru a trauma, my buddy the crisis counselor says. Get all the free grief counseling you can too. It's a loss. ( I have a degree in counseling) this WILL pass. you will recover. Don't give up. hosslady

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