How to start over...

ginnyg898 · 06-06-2011, 08:20 AM

Hi All:

I am sure this has been posted many times before, but posting now in hopes that others will have some insight.

As you can see by my sig I have been in active treatment since last August. I am looking forward to my last rad this Wednesday. When I was diagnosed I had a good job, three beautiful toddlers and my life was set. Since diagnosis I have lost my job (see previous postings for details on the evil boss from hell

), my body is wrecked from treatment, and my disposition is less than cheery.

I am struggling with the issue of transitioning from active treatment to rebuilding my life. One thing that keeps popping up is my Oncologist's comment that even though my nodes were clear, in his experience the cancer had probably spread. I plan to request a PET scan soon just for my own peice of mind, and I will be on Herceptin until September then Tamoxifen.

Quite simply, I am absolutely terrifed of starting over and not sure how to put all this in its proper place...in the past! I still have some pretty dibilitating side effects from chemo and my dr said it will be a while before I return to work.

I would love to hear from all of you that have moved on and started over...I thought chemo was the hardest part...but I am finding that the mental part is proving to be just as hard...

Ginny

Shobha · 06-06-2011, 10:06 AM

Hi Ginny,

I am very surprised at what your Onc. said. In fact, in most cases, node negative after neo-adjuvant therapy is considered to have good prognosis. Staying vigilant is always required no matter what, so why he/she said that it may have spread, I just don't get...

Getting back to normal routine was scary prospect for me as well. I remained on disability until I finished herceptin. Those few months were great to recuperate from chemo side affects as well as slowly return to the new normal. Fortunately, my boss and my company was very supportive, so the transition was smooth.

I had a very hectic and stressful job before the dx but on returning , I deliberately took on something that was less stressful,had far less visibility and had a predictable schedule. My children, then 6 and 5 have always been my source of strength. Staying busy was my best way to return to normal although even today, any little cough/cold can get me anxious.

I think you will do great - take your time and things will fall into place...wishing you the best!

Jackie07 · 06-06-2011, 10:11 AM

Ginny,

Scroll down to 'Breast cancer news' and find the thread 'State of the research in chemobrain' started by Idelle. She has coauthored a book with Dr. Dan Silverman. You will find lots of good information/tips/strategies from the links provided on that thread.

It will get better. I've found that physical/mental exercise help the most. Music provides multiple stimuli to the brain and I think it helps our brain to recover besides its soothing effect. (That one just popped into my mind...

Adriana Mangus · 06-06-2011, 02:13 PM

Hi Ginny,

I'm speechless!! I can't believe that a doctor would say that to a patient who's barely done with chemo and radiation.

Please take his words with a grain of salt. Everyone is different and our bodies react in a unique way to the chemo drugs, etc.

Now let's say that your cancer does return, so what?? having cancer is no longer a death sentence. There are wonderful drugs out there--tons of them--to treat specifically breast cancer reocurrences. Trust me on this one.

Relax, enjoy your life, go to the movies--there are many great summer movies out there-- I just saw the Bridesmaids with my daughter, we had a great time!!!!!!!

I'm a 17+ years breast cancer survivor with mets to right lung since 2003. I'm having a blast, enjoying life to the fullest. Hope you do the same.

Much Love to you.

Adriana

Lien · 06-06-2011, 02:16 PM

That onc of yours has no way of knowing if or when your cancer comes back. The remark was stupid and insensitive and makes me wonder whether he knows his business.

The transition from active treatment to the next phase is hard. You are tired, battered and often an emotional wreck. I had a 3 yr old and an 8 yr old at home, and a 12 yr old & 16 yr old alternately living with us and with their mother. I thought that was hard. I can't imagine what it is like with 3 toddlers. You will have to find a new normal and that's just what you'll do. One step at the time, one breath at the time. It is hard, and you will need support, but you can do it.

In time, it will get easier. The further out from diagnosis, the longer the periods when you forget to think about cancer. You will enjoy your kids, see them grow up and find yourself being upset or grumpy for other reasons than cancer.

For me the hardest time was when I realized that all I could do from then on was wait. It made me feel like I had no control over anything in my life. So I tried to find things I did have control over. Like reading, or cooking, or jogging, or skiing. Things that would take my mind off the fear that I would not see my kids grow up. And that worked for me. You will find something that works for you.

Hugs

Jacqueline

belle · 06-06-2011, 02:38 PM

Hi Ginny,

I second all the great replies you have received already. It brings nothing to dwell on what the onc said. Doctors tend to have different opinions about the same case. Maybe your onc turned out to be the pessimistic, helpless, or whatever type of person he is. On my mom's 4 year journey with bc (now 1+ year stage IV) we have been through several different doctors with different attitudes, opinions and competence. With no lymph node involvement the chances for no recurrence are usually good.

About getting back to normal life - it takes time... especially after what your doctor said. You received all the necessary treatment and have done your best to stay healthy. It gives your nothing to guess the future and draw pictures. It doesn't harm to stay vigilant and informed but also enjoy your life.

Hugs and best wishes,
belle

PatriceH · 06-06-2011, 07:13 PM

What you are going through is very common. Your life has been a structure of appointments and has become your "Normal." Now what? This is a time of personal reflection and evaluation. Embrace this time. It is scary to take a hard look at your emotions and your dreams. But here you are--you have Today. "What will I do with today?" Get out a tablet, cut out pictures of what you want your life to look like in a year. Post your "Vision Board" in a place you will see it every day. It is amazing that when you put your life in front of you in pictures, you make decisions that lead you to that reality. Have little dreams and have big dreams. Life is waiting for you--embrace the opportunities that await you!

Sheila · 06-07-2011, 05:12 AM

Ginny
Its a shame your Dr would say that....we all face the possibility of recurrence.....but dont y live your life waiting for it to happen.....be vigilent, and enjoy life...you have been thrown into cancerland for a visit, now it is time to get back into the real world. It may never be the same, but it will be what YOU make it. Take it one day at a time.....I am a firm believer that this disease DOES give us a different outlook on life.....I now take time to "smell the roses" and enjoy the simplest things. I recurred, and I am still here....and I am still enjoying each and every day I have been blessed with. Whenever I start feeling down, all I need to do is look around, I am surrounded by blessings and happiness. You are too!

Elizabethtx · 06-07-2011, 08:42 AM

Ginny,
I agree..shame on your doctor for not giving you anything but hope at this stage! I know they see this everyday, but as you will read here on this site, breast cancer treatment is in a new place now. Targeted therapy, vaccines, gamma knife have changed the face of treatment! Do not give up hope. Find a doctor who is willing to encourage you and try whatever it takes to survive! Hugs from me.....
Elizabeth

Debbie L. · 06-08-2011, 09:43 PM

I think you were closer to the truth when you talked about moving on. Moving on means (to me) taking something from an experience with you as you go. You are not starting over, as if from scratch. You are meshing the old you and what has changed in your life as a result of breast cancer -- and you are weaving it all into the you of today. What you take from the recent changes is in part your choice, and as so many have already said -- taking that new perspective that can help you seize your moments is one of the good things that can move on with you.

Your onc may simply have meant that he wanted you to get systemic treatment (as you did) because it's likely some cancer cells had moved out of the breast, which is correct. That does NOT mean you'll have a recurrence, it means that's the way many cancers, and particularly HER2+ cancers, tend to behave. That's why Herceptin and chemo is given, to get those cancer cells that have "spread". Both chemo and Herceptin are pretty effective at getting those cells. Not 100%, there is no absolute guarantee, but with your treatment you've made a big difference in the right direction.

I think it helped me most to hear that I would NEVER get back to "normal", but that I would find a "new normal". At first that sounded hard, but as I realized it was true, the second part of the statement began to seem not that bad. Some days, it even seemed like an improvement. The other good-news part of that is that we have some choice, some chance to affect, how that new normal looks.

It didn't work for me to try and convince myself that I'm cured and don't ever have to worry about cancer. It worked better for me to accept that life, particularly my life after cancer, is uncertain. And to use that uncertainty and lack of a warranty as a nearly-constant reminder to make the most of each moment. But that's just me. Others seem to do well with lots of reassurances and stories of those who've not had recurrences. And that's fine. We're all different, and because of that, we each need to find our own way. We can't assume that an approach that worked for someone else will be the right way for us.

That's probably the hardest part, and the best part, of this experience, no matter what happens ultimately. It's hard (but good) work, to look within and find what is best, for each of us individually. No one can tell us that. Only we can figure it out, for ourself. I send you lots of good wishes as you do this good work.

Debbie Laxague
PS: What you said about this being the hardest part is so right, for so many of us. I think it does help just to know that it's perfectly normal to enter this time of angst, or doldrums, or whatever we call it -- after treatment ends. Maybe we could call it a "rite of passage" into the next stage of our life.

ginnyg898 · 06-19-2011, 10:39 AM

Thank you so much for all of your wonderful insights. I honestly dont know what i would do if you ladies were here to provide support

CoolBreeze · 06-19-2011, 04:20 PM

Like everybody else, I'm surprised at your onc's statement. Mine pretty much told me I had a good prognosis and he was shocked when I had a recurrence.

He was wrong, but maybe I took the bullet from you!

Keep in mind, the same negative guy who gave you the misinformation about your prognosis is the one saying you won't work for a while. Frankly, I wouldn't put a lot of stock into what he says. He clearly is not a positive person, nor is he realistic. He likes to see the worst side of things.

Node negative women with smallish tumors have a great shot at beating this disease - even if HER2. The odds are WITH you, not against you. And, I don't know what your SEs are but you can work to overcome then. I'd try to prove that SOB wrong.

I have read its very common for people to feel lost at the end of treatment. I wasn't one of them - I was very eager to move on and felt confident the beast was slayed and didn't look back. Unfortunately, it didn't work out for me but I know I'm rare.

You will never get past cancer. With time comes healing and eventually you won't worry so much. Your chemo SEs will go away and you will become more like your old self. But, that cancer will always be in the back of your mind. It changes you.

Your job is to try to figure out how to move on. Research ways to improve your physical situation. Get out, exercise, improve your health. Learn something new, and find a way to create a new healthy life. Every time dark thoughts come in, find something positive to do.

Maybe when you go back to work you'll find a better job, or a simpler job you enjoy more. I don't know, it's something you need to figure out.

Thousands of women have been where you are and are doing well. Cancer will always be a part of you, but as long as you don't let it overwhelm you, you will do well.

FYI - I worked during chemo. I plan to work during chemo again too.

Big {{{{{hugs}}}}} to you.

Blondie · 06-19-2011, 04:58 PM

Hi Ginny,

I am at the similar stage of treatment as you, I finish Herceptin in October. I can relate to many of the issues you have discussed.

I returned to work full time when I completed chemo in February. Some days I feel fine and other days everything hits me all at once- diagnosis, treatment, and anxieties re the future. Throughout chemo I was too busy with appointments, managing side effects and feeling awful that I don't think it really hit me until past few months. Also, initially after diagnosis peoples flight / fight response kicks in.

I suppose I feel very tired of it all! Ongoing side effects- fatigue and chemobrain- particulary when at work. I don't have the energy outside of work to find the work / life balance some days.

Also, my priorities and goals have changed. Quite often the goals of those around you don't though. This is what I find the most challenging....I think at times it is a way of coping- your loved ones go into a denial. They don't think that the cancer will ever come back- so they carry on as usual and you feel so different. Feel like I'm on another planet some days. I'm reassessing my hopes and dreams.....

So I take one day at a time at the moment- live in the moment. Try and do the things I enjoy each day- gain enjoyment from the very simple but most important things in life! If I do have a "bad day" I try and think tomorrow is another day and all will be well.

I agree with all the other ladies. Your Dr should be inspiring hope- not fear and anxiety!

All the best
Blondie

Becky · 06-20-2011, 04:55 AM

I want to add my 2 cents - the new normal is hard to accept, especially the first few years. I thought the first 3 years or so was hardest - thinking about the possibility of recurring and all I had been through. Unlike most, I did not have the chance to have Herceptin with chemo treatments, it was not available and done that way then. Four months out of chemo and 2 months out from radiation, it was available so I did the Herceptin alone. It does work that way but it is not as good as when you get it with chemo but I got it. Worry, worry, worry. I really think it is part of the process and helps you to move on the way you want to. I think the hurt of it is (in a way) essential. You grow up quick and it makes you think of how you want it to be. Who will be in your life, what kind of job you want. Some of those things you have to fight for and you KNOW you know how to fight. You fought this, you can fight anything. Yes, cancer changes your outlook but that can be a good and useful thing as long as you do not become a "woe's me" person and you won't. Time is on your side and you will come out the other side better than you were, stronger than you were.

There is always a possibility of recurrence. I am almost 7 years out and had a positive node but I still can recur but everyday that goes by, there is less chance of that but I do not think about it all the time anymore even though I come on this board everyday to "see" my friends who helped me through like Sheila, StephN, Sassy, Jean, Alaska Angel. I also come on to help others and just plain ole stay informed.

As for your doctor, some just do not have a bedside manner at all. Many cannot communicate in a way that reduces fear. For example, once a tumor is a million cells (which may be still undetectable), some cells can break off and travel. Therefore, all of us may have had traveling cells. Some cannot "take hold" anywhere else (the immune system takes care of them), some cells are also killed by treatment. Your doctor knows this but could have said everything differently - telling you your prognosis is excellent (IT IS) but that you will need to be viligent (you do) on pain or symptoms that persist beyond 2-3 weeks.

Like you, I got CT scans of the chest, abdomen and pelvis as well as a brain MRI after chemo and rads (right when I was just starting the late Herceptin) for peace of mind. That was all I had so far (besides mammos).

Bottom line is that the end of treatment is a scary time and you have been through alot (even personally with your job). But use it to your advantage. Did you like the job? You now know what your old boss is really made of - a pile of ----!! Probably would have fired you if your child got a bad case of the flu and you had to stay home. Now, rest up and find yourself your dream job. You will be very happy with it.

We are always here for you.