• Transition to survivorship

    Asked by Luie on Thursday, June 29, 2017

    Transition to survivorship

    I've been taken such great care of by my team of doctors for the past 10 months and now that I'm finished treatments, how do I begin to transition to my new normal life by myself?? It seems scary, like I'm being thrown out to the wolves

    15 Answers from the Community

    15 answers
    • beachbum5817's Avatar
      beachbum5817

      You are right. It is scary. I had treatment for a year, and I was so nervous about not seeing my oncologist every 3 weeks. I didn't understand how only seeing him every 3 months would work. It is amazing what you can get used to. I also had to see my breast surgeon and radiologist every 3 months as well. I tried to stagger those appointments, so I was seeing someone about every month. Now after 3 years, I have moved on to every 6 months. Again, I am a little nervous, but I will adjust. I just am being more vigilant about doing my own self exams. If something new crops up, I give it 2 to 3 weeks before I make an appointment with my primary doctor. Fortunately, I have found that most things have gone away on their own. Try not to stress over this too much. Now that you are done with treatments, it is time to get back to living your life. It may take some getting used to, but you can do it. Good luck. Take care.

      almost 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      Yes, I know that feeling, the first two times I was happy to see that place in the rear view mirror. The third time left me with a feeling like you say, I was being tossed out. There comes a sense of security with being in treatment and having the doctors and nurses looking over you all the time to be sure everything is all right. But we have to move on, here are some articles we have posted over the years about moving into the survivorship:
      Creating a Survivorship Plan for Life After Cancer >> http://bit.ly/SurvPlans
      5 Things to Know About Survivorship >> http://bit.ly/1iGT7x6

      almost 5 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Yup. I was used to having doctors fuss over me, then boom! Every 3 months. Then my surgeon's office manager fired me, so I was only being followed by my medical oncologist. Now, I'm at every 4 months, and I think we'll be dropping to 6 months soon. (Next appt is next Friday...). It's a hard transition. But you get used to it. I was diagnosed w/a different kind of cancer, so we keep an eye on the CA125 level in my bloodwork. As long as that stays under 35, I'm good. It bounces around the mid teens. Good luck.

      almost 5 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have wondered how I would feel if I ever got to stop treatments. I think I would mostly just be glad to not have to give up a day of my life every 2 weeks to go to treatment. But, there's a certain degree of confidence I have from getting those biweekly infusions. I, perhaps erroneously, feel like the cancer is being held at bay with those. Too, I like being able to contact my doctor and get immediate attention, regardless of whether it is something cancer related or not.

      Sooooo. I understand why it would feel weird ... and not exactly liberating ... to be turned loose. Fill up your calendar and prepare to enjoy life!!!! (That's what I think I would do)

      Congratulations!

      almost 5 years ago
    • geekling's Avatar
      geekling

      Yes, lol. I was thrown to the wolves and they ate me too!

      Seriously, I was thrilled to be done with cancer. But I was so weak I could barely stand. It took literal months for me to feel strong enough to get to a gym, to vacuum, to walk more than a few steps without moaning, to begin to regain control back over my bottom end.

      Be grateful you are done. It takes a while to strengthen up. I never had any 'Stockholm syndrome' or missed the docs and their methodology in any way. Three months into getting stronger at the gym, I reached a below normal plateau.

      I hated going back to the docs. I wanted my life back. I still kinda do. That is when I found out I had been mishandled and had more health challenges with which to deal.

      I am still, 15 years later, unfond of most doctors and their offices. I have yet to meet more than one, maybe two, who cares as much about patients as him or herself or is capable of overcoming CYA to actually tell a whole truth.

      I hope your experience in regaining your health will be different than mine.

      almost 5 years ago
    • Luie's Avatar
      Luie

      Thank you all for your replies. I will read the articles and be grateful to be able to plan my future my way. I saw my therapist this week and she said she totally understands my feelings of being under the careful watch of my health team as they told me when to get chemo, blood work, radiation, etc. Her point was that now I get to choose how I spend my days. I'm a teacher so I have the next 8 weeks off to focus on getting stronger and filling my time with what makes me happy and peaceful before returning to work. One day at a time

      almost 5 years ago
    • SueRae1's Avatar
      SueRae1

      Congrats on being in remission. I felt the same way after I went into remission the first time in 2014. I was still feeling many of the effects of my treatment, and it took over a year to feel as energetic as a did pre-treatment. You are thrown into to the treatment mode abruptly and I did what I had to do to get through it. I got support for my physical and emotional conditions. My team helped guide me through all my options and the treatment itself. Once I went into remission there was no clear path to follow. It was joyous and confusing all at once.

      almost 5 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Luie, I'm glad your therapist was able to reassure you. If you are afraid you'll get anxious again without an appointment, remind yourself you can call your doctor if you have any questions. Enjoy your summer!

      almost 5 years ago
    • SusanK's Avatar
      SusanK

      You have been through a war, you know, and like veterans returning from their battles, you have to adjust. You are forever changed by what you have experienced. You can't just forget what you went through; you can't pretend it didn't happen.

      It's okay to feel frightened, and I think that's normal. My treatments ended five years ago and it took me nearly a year to stop waiting for "the other shoe to drop." But the years have gone by without a relapse, without bad news. I now truly feel like a survivor and can proudly say the word to describe myself, without fear.

      Appreciate each day, and love those who love you back. Try to help others. Answer questions here at Whatnext for those who are going through what you once did. In short, LIVE. And look forward to new challenges and rewards. Good luck!

      almost 5 years ago
    • msesq's Avatar
      msesq

      I was glad to hear you discussed this with your therapist, as it can help tremendously. After my treatment ended I had a recurrence scare and seeing a therapist who worked with cancer patients was really helpful to talk things out. The most important thing my therapist taught me is that life comes with no guarantees that cancer won't return. However, if you spend all your time worrying about it you miss the time you have to live your life fully and enjoy whatever time you have left. Meditation and mindfulness practice also helped as did the passage of time. Good luck!

      almost 5 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Oh yes, when I finished active treatment, I went from having a hive of doctors and nurses buzzing around me and making sure I was doing all right to feeling as if I was parachuted onto Gilligan's Island minus the wacky castaways. ;) I think the only reason I stopped seeing my radiation doctor and my surgeon was because I had moved and didn't need new ones uponmy arrival in the new town. As I did in the town where I was diagnosed, I still see my oncologist every 3 months. It's a mixed blessing in that I still get some attention; however, I do rapidly weary of constant trips to the oncologist and OB/GYN. I am happy for you that you are in remission, and I encourage you to adjust back into a normal lifestyle at your own pace. You have that luxury now since you have summertime off. I know for me, I napped a lot when first out of active treatment because my body had been through the wars and needed time to help itself get better. May all go well for you this summer. HUGS and God bless.

      almost 5 years ago
    • Jouska's Avatar
      Jouska

      Luie, it is very very disconcerting to go from total care and watchfulness to see you in 3 months, now for me 6 months and I got "demoted" to the PA, whom I like, but she is not my oncologist. Msesq said it well, it is part of survivorship. Someone on this list mentioned the two week rule and I have found that to be very helpful. Everyone, cancer survivor or not, has twinges, occasional aches and pains or funny feelings. As a cancer patient, you (or at least I did) go to the dark place of OMG, my cancer is back. Chances are, it is not. So someone suggested on this site, wait two weeks. If symptoms persist through that time, check in with someone, your GP, your oncologist or whomever. But don't fret about it, give whatever it is those two weeks and most likely the pain or discomfort is more related to everyday living, than cancer. This concept has really helped me from overreacting to stuff and helped me stay focused on living my life.

      almost 5 years ago
    • Donnie's Avatar
      Donnie

      I had a survivorship plan done and that helped me a lot and I shared with all my doctors to make sure we are on the same page. I am seeing my cancer dr every three months for past four years because type of cancer I have. Plus I keep busy with other activities.

      almost 5 years ago
    • Jesse0218's Avatar
      Jesse0218

      As for me, I couldn't wait to get out of the doctors offices and be done. Or, at least mostly done. I can remember 1 week, I had 5 different doctors and was totally 'doctored out'. I've never been a fan of doctors to start with. I was thoroughly traumatized as a 3 yr old and it left me with more than a fear of them. Basically, if I can stand up and walk, I'm fine. My PCP took the time to explain what happened to me one time. It isn't/wasn't just me left like this - with a terror of doctors.
      So, the sooner I was done, the happier I was. Besides I had big plans for retirement, which I managed to do anyway while going through radiation, surgery, etc. No chemo. I said 'no' to it.
      I had the choice of seeing the radiation oncologist one more time in a year or just seeing my medical oncologist. I picked my medical oncologist. I hated radiation more than anything.
      I got 6 months with my medical oncologist last time and since I have to get one more diagnostic mammogram, her NP only gave me 3 months this time. Dang, I like 6 months better. She's really nice, but I hate going in there. Even hate it more since one of the nurses came out in the waiting room and gave somebody a shot in front of me. Who has a terror of doctors. Not a good thing. If I could get away with once a year with her, I'd be happy.
      I keep saying that having cancer has made up for all the years I stayed out of doctors offices in the past. I just want to put it all behind me in my brain and move on. I don't worry about it coming back. In my mind, it's gone - forever. I just want to live my life doing what I want to. Including riding horses again after I finish PT for a broken ankle, photography for Longwood Gardens and working with rescue horses. Too much living to do to have time for cancer!

      almost 5 years ago
    • triciab's Avatar
      triciab

      Cancer treatment takes up so much mental energy and time - I rang the bell after my last radiation treatment and felt a little lost. I had worked all through treatment so eliminating weekly then daily trips to the cancer center allowed me to catch up and recuperate and just focus on "real" life. Try not to worry. That might the hardest thing of all. (I love the 2 week rule - I'm implementing that today.)

      almost 5 years ago

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