treatment over, what now

jad112 · August 2015

I am new to this and wondered if anyone out there had the answer to how I feel now. I was diagnosed back in Dec. It was immediate didn't wait for result before doctor was organising treatment. I had chemotherapy (x6 = 2x fec and 4x taxotere), masectomy with reconstruction and all lymph nodes removed on that side, finishing off with 16 radiotherapys to full breast, underarm and lymph nodes at neck. I finished treatment middle of July and do not see the Oncologist until Sept. I have seen my surgeon as I am getting my implant inflated gradually but again no other appointment until Sept now.

I now find myself at a complete loss and suddenly like there is nothing left to do except wait and see what my fate is. I have been strong throughout my diagnosis and treatment because that is the type of person I am, just taking each thing in my stride and dealing with the outcomes when they arise, but I am floundering with no direction now. I have never been given my stage or grade although I know that it is invasive lobular and was 7cm in size, with 18 lymph nodes removed all having cancer present although 6 were scarred so the chemotherapy had worked on them. I am also on tamoxifen.

I can't remember what ordinary feels like and find it difficult to think about going back to work as it seems too simple. I have assumed all through my treatment that I would be cured, never doubting it really until now when it is all over, I now have thoughts of " what if they didn't get it all", " what if bits are still growing", " what if I get it on the otherside", yet none of this bothered me before. I am the strong one in my family and would find it impossible to explain any of these things to my husband or daughters as I could not bear to see the looks on their faces if they saw me fall apart now.

I would have thought that when you reach the goal of treatment over you would feel some kind of relief but it seems to just get harder. Am I being dramatic now or did other people experience this?

Stacy7 · August 2015

Congrats for finishing treatment .. Look at this way .. Treatments have come a long way in making your prognosis very successful, you will be monitored closely now so you are still not left out and everyone can worry about fate and tommorrow so your not any different now live your life cause you have it like everyone else.. Thats how i think and it helps. This board is a blessing too for those moments of isolation .

BrooksideVT · August 2015

It's absolutely horrid, but we all experience it to one degree or another. Going from active treatment (daily, in the case of rads) to what feels like a vacuum is terrifying. My RO had a nurse practitioner who offered follow-up visits, mostly to help us through those post-treatment questions and heeby-jeebies. There was also a therapist, but I didn't realize speaking with her was free, so I did not take advantage. Maybe your center also has some follow-up options?

ksusan · August 2015

If you'd like a positive focus with health goals, you might want to join one of the exercise and well-being threads. Bonus: Exercise is associated with decreased anxiety and depression!

Here's one: https://community.breastcancer.org/forum/58/topic/...

Here's another: https://community.breastcancer.org/forum/69/topic/...

SmartassSmurf · August 2015

A lot of us feel the cold hard slap of finishing treatment and not being sure how to go back to normal life. Accepting that life may not get totally back to normal is really difficult. People often say there is a "new normal." That term doesn't work for me, but it does work for some.

Good luck to you in getting there. I am hopeful you find the right support here, and in your daily life to get you back to where you need to be.

Jackbirdie · August 2015

unfortunately, what you are feeling is very, very common. It seems to be sort of a "hole" in bc treatment that needs to be better addressed. There is another thread "Why Was I Stronger During Treatment" (sorry no link, but you can search on it) which was started because so many feel the way you describe.

I'm so sorry this happened to you. I just had my first follow up with my MO and it was such a non event I asked him who I could talk to. Turns out they had a nurse navigator, and one of her functions is to help a patient develop a "Survivor Plan" after tx. I don't like the name particularly, but I'm going to make an appt and give it a try. Maybe your MOs office has something similar.

I was surprised if they have it, why don't they offer it? Anyway, you can ask, and maybe if you ask for a Survivor Plan it will jog someone's brain

ksusan · August 2015

Now would be a great time to schedule at least one wellness activity every week.

Dental follow-up
GYN
Ophthalmologist
Nail care consult
PT/LE consult and sessions
Gym/fitness membership
Cooking class
...?

I think we have to make our own fun after the cascade of appointments.

auntienance · August 2015

It's called Welcome to Limboland. It's very common and not very well addressed. I went through a bout of depression after treatment, something very out of the ordinary for me. I finally talked to my pcp about it. She told me she was not surprised after all I'd gone through. Part of the problem for me was that taxotere left my stomach in a mess and I wasn't feeling very well. My doc offered me medication, which I wasn't opposed to, but I wanted to wait to see if my mental state would improve once I felt better and it did. But it still took a while to get past that "abandoned" feeling, that "what do I do now?" feeling. Actually, one of the things that helped me tremendously was these boards. If I'd been closer to a support group I would have gone to one too. It just really helped to talk to people who have been there.

I wish you the best of luck.

treatment over, what now

Comments

Categories