Does Anyone Else Wonder What To Do Now That The Treatments Are Over?

I was diagnosed with Invasive (inflammatory) Lobular Carcinoma of the right breast in Feb. 2002, started chemo (Adriomycin and Cytoxin) for 12 weeks, once every three weeks for four rounds, took a 3 week vacation from chemo and then started Taxol for 12 weeks, once weekly. I had a break for a month or so and then had a radical mastectomy on Nov. 1 with reconstructive surgery (free tran flap from stomach) that had to be removed the next day because of complications. I also had a reduction of the left breast at the same time so it would better match the reconstructed breast. Oh, well, I ended up with one pretty perky breast and a tummy tuck after 24 plus hours of surgery in 2 days. I had a lot of lymph nodes removed because they were affected by the cancer - stage 3b by pathology report. I started radiation treatments in January 2003 and finished up on March 3. I am also on Femara. Well, here I am, still standing and wondering what to do with the rest of my life. I don't have to go back to the cancer center anymore, except for 3 mo. check ups. I felt much safer when I was there every week because someone was always checking on something and I had blood work done weekly. Now that I'm free I feel like my high wire act just lost its safety net. Does anyone else out there feel this way?

My husband had non-hodgkins lymphoma and my daughter had mesenchymal chondrosarcoma. Both are cancer-free. My daughter has faced multiple reconstruction surgeries. We have spent a lot of time in the last 4 yrs. down at St. Jude's in Memphis. I felt like you do--the safety net is gone when we're home. But, after much struggle, my daughter, who is now 21, is on the emotional/social recovery track. All we can do is to trust that God knows what's going on and what is going to happen. I'll keep you in my prayers.

Hi Candace,
I know how you feel about the feeling of having a safety net. I have colon cancer. I was diagnosed in Nov. of 2000. I had a complete hysterectomy in April of 2002,and through biopsies, I learned that the colon cancer had spread to my right ovary. My oncologist told me to "go live my life" in Aug of 2001 after initial chemo. Well there were no follow-up tests done, and the cancer had spread. I'm not telling you this for you to assume the worst. I just want you to make sure your doctor orders whatever tests are necessary. I felt worse when I learned the cancer had spread. If it had not been for my gynecologist ordering biopsies on the ovaries, I don't know if I would still be here today. I'm still seeing the same doctor, only now I am assertive about scans etc. I am doing quite well now. There is no measurable cancer in my body. I guess when you're on chemo, you do feel safer, but you have to be positive, and advocate for yourself. After all you've been through, take some time to celebrate. I wish you good Luck Julie C.

I was diagnosed with primary peritoneal cancer (some ovary involvement) in March of 2002 had 6 rounds of chemo every 3 weeks. That ended in August of 2002. I go every 3 months for check by oncologist. I now find myself getting more anxious as time passes. Just waiting for the other shoe to drop. Was told there is usually about 2 year remission and then reoccurance, and a 5 yr. life expectancy. I am having a CT scan done next week, just because of my history. Really scared they will find something. I also do not know how to get back to living. By the way this type of cancer is treated the same as ovarian, and prognosis is the same, I am stage 3c. Would love to hear how you are coping. Minnie

Hello to everyone who responded to this e-mail...I must say that I too am feeling the same way many of you are. Truthfully, if anyone tells me to "be positive" just one more time, I may lose it. Yes it is difficult to get on with our lives and we aren't all these wonderfully "transformed" people that we hear about. In 1997 I had a mastectomy followed by several high dose treatments of chemotherapy. Doctors didn't think I'd make it through the year. Well I did...I thought my family needed me and I completely changed my diet, took supplements and tried some of the alternative approaches that are available...It's been over 5 years now, but this past year my cancer was found throughout my spinal cord and in my hip socket. Had radiation treatment and now am having Zometa treatments (a bone building treatment) and am on Femara. I attempted to return to school to become a massage therapist, but had to quit because of my illness. So now I am kind of stuck in a job that I'm not esp. thrilled about because my husband has had a difficult time finding work that is consistent. And I also carry the Health Insurance Benefits, so I will have to work until I drop. I feel ok except for minor pains and all and it most likely is better that I do work.

Well anyway...I too am feeling very discouraged and the "waiting for the other shoe to drop" expression is exactly how I feel. I made an effort to become a massage therapist and thought my life would really be different. But I guess it just wasn't in the cards. Now, I just can't seem to move on anymore. I'm tired and just feel that I don't have long for this world. It seems that I've suffered long enough and that I've had my share, but problems just keep surfacing and I'm tired of dealing with them...I really don't know where to turn. I don't want to take any anti-depressant because I want to be able to deal with these feelings. I've been on those before and its as if you have no feeling.

It's just hard to move forward. I just wish I could find some peace in all of this.

Dear Deborah, Your story sounds so sad, I wish I could give you a hug, I know that wouldn't cure you but it might make you feel better. I was wondering if there are any cancer survivor groups in your area, if so you might want to give that a try. I am not a joiner by nature but I have been going to the meetings and it is helpful just to talk to someone who can completely understand your feelings. I hope you can find a group, or keep writing on this message board, we are all out to help one another if we can. Hpoe things take a turn for the better for you.

Hi Deborah, Jan here. I am an ovarian cancer survivor of almost seven years now. Stage 4. I too understand your feelings and the others who sort of just wonder what next?????? As far as the word you would rather not hear, I guess it is used a lot isn't it? I wish better things for you and all the others who have had to fight and struggle with this damn cancer. Some day I hope it to be no more. Yes, those same feelings are with me also...what is around the corner? I hope to remain strong and able to fight this beast if it chooses to return to my body but mean while I will stop and smell the roses a little more often than before. I will leave you with this quote my friend..."There isn't a valley low enough that an angel can't carry you through it”

Be well.........Jan

Hello Jan,

I just want to thank you for your understanding and for your sharing your faith. I DO believe angels are helping us...guess I just struggle with letting myself have total comfort and trust in that. I'm trying to cope and may go back to a counselor again. I want to make the best of my life, but just get real down in the dumps at times. It just seems like I've had enough pain in my life and would really like to have that be over with. I would really like to experience some true JOY before I leave this world and to maybe be able to share that with others. I am searching and will hopefully find the peace I need. Thank you and good luck to you with your struggle. Please write again soon and thanks again for the understanding words.

Deb

Hi Jan. I just read that you are a stage 4 ovarian cancer survivor of 7 years. How amazing! I was given 3 months to live without chemo and 5% chance to make it for a year, after than 20% to make it for 5 years. I recently went to my check up since my last chemo in May. I thought I would get all good news because I am feeling better, hair is growing back, some of the side effects that I have are lessening in pain and I can actually get about when I feel like it. I have not been given the ok to go back to work yet. They have me on disability. I am only 43 years old. When I went for my CT scan and check-up, they found nodules on my lungs and want me to start chemo of doxil or gemzar. I was hoping for good news and to get on with normal life but now another set back. Not sure what I want to do. I am thinking of the Alivizatos treatment instead. Could you fill me in some on your situation and how you made it this far? That is just great!!! You could email me outside this group if you want to. My email is andrie@spacestar.net. Thanks and good luck to you all!!! Keep your chins up! Prayer does help! Family is also a very good support group although they don't know 1st hand what you are going thru. They will always be there for you.

I have used this a lots and am still using it! You might want to use it too! So many praying on your behalf!

www.worldprayerteam.com

David