Chemo has ended- and I am terrified- is this normal??

misswim

Today was the last of my dose dense AC/T treatments. I had a horrible time on chemo and should be so glad it is over. Had a clear bone scan last month and a clear CAT last week. I should be thrilled to be done. Instead, I find myself feeling like my saftey net just broke. I am terrified of recurrence. Am I just paranoid or do others feel like this when active treatment ends? I am on to Tamox and Lupron, and Zometa in a few weeks, and an ooph next year.  I am in the Metformin trial so I am basically doing all I can to prevent a recurrence and have to hope for the best. I had a 33 Oncotype and it scares me. I had 22% chance of distant recurrence with just surgery and tamox, and the chemo knocked that chance down to 10%. The chemo was worth it. All I can do is pray.

I cried like a baby leaving my chemo suite today. The nurses sang to me, gave me flowers, and a diploma! The onc continues to tell me my prognosis is really good.

Why am I so scared? Has anyone else felt this way after ending first line chemo treatment?

Any input is much appreciated. Thanks so much.

dana14

I finished my treatment in September and my CT scan and bone scan are clear.  However, I seem to be looking for evidence of disease.   I am all stressed out.  I scheduled radical hysterectomy even though I could just have D&C.  Instead of being happy I am worried and I don't believe it's over.  I have a mystery pain in my abdomen and I fired my oncologist over her telling me that there is nothing wrong with my liver.  I was very positive and optimistic over the 18 months of treatments and now that I am finally officially healthy I am freaking out.  I keep changing my mind about hysterectomy - I have some cysts, fibroids and polyps brewing in there but nothing that looks malignant.  So the surgery would be more on profilactic basis.  I have been calm and sensible all this time and now I am a mess.  

Shouldn't we be happy?! 

ppplocke

I'm not sure if it's "normal" or not to feel like that but that is certainly how I felt when chemo was over last February! I was terrified. I then did 36 rads and a total hysterectomy so I, too, have truly done everything humanly possible to prevent a recurrence. I do not know what else to tell you except that "I get it"...who knows, maybe that in and of itself will help.

Megadotz

Several survivor friends warned me that ending active treatment is a very stressful time.  The hospital I go to offers a "looking forward" support group for women who  are within two years of finishing active treatment.  It really helped to be with others who were going through same part of this journey.

 It was offered in conjunction with cancercare.org -- they also have  phone and email support.  This includes oncology clinical social works you can call (for free)  that  definitely "get it."

It's a  rocky part of the journey to  go from being in the center of the activity to working without a net.    You're not alone in feeling this way.  

It's hard to be viligiant and  move forward at the same time.

*hugs* 

misswim

Thanks ladies. I woke up this morning feeling really happy that I don't have to go back to chemo. I have a feeling I am going to up and down and all over the place.........

momand2kids

This will pass.... as time goes on, things will normalize.  your hair will grow back, you will finish rads if you have to have them-- then you will be down to your lupron shot and tamoxifen.  I do the lupron once a month and honestly, it doesn't even remind me of bc any more.  You will be more present in your life every day-then the day will come when you don' t even think of bc.  But for now, what you are feeling is so very normal.....

shadow2356

I remember my onc telling me that people tend to get depressed when treatment ends.I laughed and said that's not me, when I am finished I will be thrilled. Well, my treatment is over and I did get kind of depressed. I don't know about clinically, but not my normal. I think you have the time to think about everything. When you are treating you are just trying to get through it. When you finish it really hits you. Also, every little twinge is so scary.

I had Her2+ breast cancer so I know I am at a really high recurrence risk right now. I try to put it in the back of my mind but I admit it rears up a lot.

I do know people who are 10 and 15 years out. They all tell me with time this gets better.

Good luck!

peggy_j

Sounds completely normal to me. I "only" had a lump + rads but on my last day of rads my RO told me that it's common for patients to experience a let down after Tx ends. (I forget how he worded it). FWIW, I finished rads around Memorial Day, had a fun summer, and then started to experience sadness/grief/anger/mega-anxiety/etc in late Aug and Sept.  I feel like I'm in a transition period to the "new normal." (a phrase I hate, BTW).   I found it helpful to get some help. I talked to a counselor once. (she suggested I do journal writing to help get the thoughts/feelings down on paper and out of my head/body).  I went to a support group. I go to my healing imagery class every week if I can. Different things can help different people at different times. Why not try some of the cancer support services in your area and see if any are helpful? You can go once and if it doesn't work, you don't have to go back. It sounds like your feelings are normal, and don't forget you don't need to go through this alone. I was feeling isolated because "nobody understood" what I was going through. (though my family and friends meant well, no one had gone through anything like this)  Well, I walked into the support group and everybody there understood in spades. Good luck. (((hugs)))

jenni__ca

yeah "normal" is tough to define ... but you are certainly not alone !!!

Fearless_One

Sweetie, I'm two years out and I still worry - totally normal!   But it sounds like you have done everything possible to kill the Beast!  

nancyh

It is normal to feel some anxiety after chemo.  You've been focused on intense treatment, doctors and nurses taking care of you for months and now it feels like you're being pushed out of the nest to fly on your own.  Recurrence is always possible and you'll want to be vigilant about your health, but what you'll hopefully find is that the farther you get from diagnosis, the more distant those worries are.  Very best wishes to you and congrats on getting through this milestone.

Oh - and as a footnote, if your onc recommends tamoxifen or an AI, take it religiously.  I discounted how incredibly powerful hormone therapies are, so I'm an evangelist for them. 

AmyIsStrong

Misswim - I swore this wouldn't be me. I had the big check-off calendar, I was SO ready to be done, I was counting down, etc etc. And then when the time came....it was terrifying. I almost signed up for a clinical trial (which I barely qualified for) just to prolong treatment. And I was someone who didn't even take Tylenol pre-bc.
I spoke with the onc who was administering the trial and she was very calming and reassuring. She said that I had had a lot of treatment and had to trust in it. She said that I had to get used to the end of treatment at some point, and even if I did the trial, I would have to face the same issues after the year was up.  I realized then that I had to face it and be confident.

And after a few months - WOW what a feeling. Life back to (almost) normal - feeling good again, working out, being active, not so involved in the medical world, feeling good. LOVED IT!  it just took about 2 months to get used to, and then...no looking back.

I do A LOT of lifestyle things and supplements on an ongoing basis to minimize the chances of recurrance.  That helps keep the fear away.  Plus I work out VERY hard, and am always sore in one way or another - so if anything hurts, I just figure it is from working out, rather than thinking the cancer has spread through my body. 

Give yourself time to adjust to the change of treatment being done. Be PROUD of yourself - YOU DID IT!
In support & sisterhood

Amy 

misswim

Thank you so much!!!

bikenyc

Yeah I cried like a baby on the way to my last chemo.  I think part of it was that I was thankful to be done.  But a big part was that I was terrified.  So much mental energy during chemo had been devoted just to getting through the day. There wasn't a lot left for worrying. 

I'm 4 months out and have realized the fear is something I'm going to have to figure out a way of dealing with. My hip hurt a couple weeks ago and I got myself convinced it was bone mets. When I went for my herceptin yesterday, they said my onc NP wanted to meet with me first and I almost had a heart attack waiting to see her...thinking something had shown up in my blood (the hospital messed up, she didn't need to see me).

I'm thinking it has to get better. Amy - love your workout till your sore/blame aches on that philosophy.  That's a great reason for me to workout more. 

Gingerbrew

I felt like I was having a breakdown when radiation ended. Your feelings are normal. I am sure you are going to get great advice here. We are all walking with you.

Ginger