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Anyone Else Have Random Pain -- Or Should I Be Worried?

AmyByTheSea's picture
Posts: 6
Joined: Mar 2017

Hi Ladies.    I am 3 months out from my last chemo and was declared NED status mid-January of this year.  (I was diagnosed stage 3a, grade 3 in May of last year- went thru chemo/radiation/chemo). 

The past week or so I've been feeling EXTREMELY fatigued.  My legs shake with effort just to walk across a room. I'm constantly tired, etc.  Just had bloodwork taken yesterday to check hemoglobin levels.  I've been anemic for quite some time.  I think tht it's possible that the hemoglobin has dropped again.  (At my Jan visit, my onc said that if it went any lower it would be time for blood transfusion again).

My concern is that for the past 3-4 days, I've been having some pain/discomfort in the pelvic area.  It reminds me of the daily pain I was having prior to my hysterecomy (everything taken) that led to my cancer discovery.  I'm hoping that it's just phantom pain or something that should be of no concern.  I had my last scan mid-Dec and it was clear and my CA125 was at 19 last month.  I haven't said anything to anyone because I don't want to stress my husband or family.  But after a few days of this, it makes me a little nervous. 

Anyone else have random pain?  All other signs point to everything being OK.... I guess I'm just looking for some affirmation that I don't need to worry so much. 

TeddyandBears_Mom's picture
Posts: 1802
Joined: Jun 2015

Hey Amy,

I still have random pain and I finished my treatments 1/2016. Mine comes and goes. My understanding is that we need to worry if the pain continues for 2 weeks. That being said, I would definitely talk to your doctor just to be sure. After going through this, I don't think we can take anything for granted.

I hope yours is still just healing pain. Please come back and let us know.

Love and Hugs,


Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Talk to your doctor. it is  better to err on the cautious side and it will give you peace of mind.  Maybe he/ she can help with the fatigue, too.  I wish I could tell you that worrying will eventually go away, but that seems to be a lasting side effect,  every new little ache, sends those thought of worry racing through our mines.

Hugs and prayers, Lou Ann

AmyByTheSea's picture
Posts: 6
Joined: Mar 2017

I guess it's true that we will be forever changed by this experience.  I guess I was hoping that once I made it to the other side of treatment that I would eventually resume my normal life.  It's just a new normal.

On a happy front--- my hair is finally starting to grow back in.  It's not alot, but it's there... and, there's color to it.    Before treatment I had red hair ---- long hair.  In fact, it was so long, I could literally sit on it.  During radiation (after my first rounds of chemo), my hair started to grow back a little.  But, instead of red, it was white/blonde.  I looked like 1980's Billy Idol!  Tongue Out  :)  ---- Of course, it all fell out when I started chemo again.   I'm not a redhead again.  At least not yet, but I'm a bit of a brunette. 

Thanks for the encouragement.... I'll talk to my doctor.  Hopefully the bloodwork will reveal the reason for the fatigue and I'll just monitor the pain and hope it goes away soon or I'll call them on that, too. 

Kvdyson's picture
Posts: 789
Joined: Jan 2016

I agree. Better to tell the doctors about the pain and let them figure it out then to use up your energy worrying about it.

So sorry to hear about the continued anemia. I experience that before my diagnosis and it was awful. Thankfully, mine cleared up after my surgery. Hope the doctors can help you overcome it quickly.

Glad to hear that your hair is starting to come back. Mine came in curly at first - which seemed crazy since I've had stick-straight hair my entire life. It's back to normal now that I've had it cut a few times.

Keep us posted on what you hear and good luck to you! 

NoTimeForCancer's picture
Posts: 2911
Joined: Mar 2013

I agree with Kim and Lou Ann on calling the office and telling them about your pain.  That is why they are there - to support you with their professional knowledge.

I think when we first get done with treatment we worry every little pain is "something" - and I think that is COMPLETELY understandable.  As for 'being back to normal' I think you are right that it is a 'new normal' but I see where things have gotten better over time.  

That goes for my hair too.  It came in kind of gray and baby fine.  Then it got brown with gray - probably closer to what it really was but since I colored it before I lost it - it is just a guess.  It got super curly and when it got long enough I would wash it and it would dry in perfect ringlets.  (The CRAZIEST thing I have ever seen)  

Here I am just about 5 years from diagnosis and it finally is back to the way it was before it all began.  I admit, I cried when I lost my hair the first time, but the second time it was old news.  I realize it is just hair, but watching TV and seeing all the emphasis put on pretty hair made me realize even more how incredibly superficial the world is.  

Sorry about that rant ladies.  


Kaleena's picture
Posts: 2064
Joined: Nov 2009

Amy, I still get random pains here and there.   It is usually nothing but healing, etc.   However, I do always mention it to my doctors when I have my appointments.   The hardest thing for me is that my issues isn't always something that our gyne/oncologist can relate to.  ie I also have a Urologist, a PCP, and now a GI doctor.  Yikes!  

Hang in there!


Posts: 41
Joined: Mar 2016

AmybytheSea, I had intermittent tugging pain lower right side near where the radiation had been for about a year after I finished chemo/radiation. Yes, it could be a bad thing. But maybe not. Because my CT scan had just shown all clear, my oncology nurse gave me a good suggestion to keep a food diary and notice when the pain came and went. I still had lots of weird bowel issues and it turned out that radiation can cause adhesions etc or just damage it enough so it feels weird, like tightness, pulling, etc. Chemo also temporarily damages the lining of the intestines. I noticed when I ate certain things -- or when I did not eat! -- I got this pain. I also sometimes got a pain near one of the robotic incisions from my hysterectomy. Finally after about a year my system went back to normal  and I have had no pain since. Good luck. 

PS: one odd thing might be worth trying if tests fail to show any cancer return but you are still having abdominal pains or intestinal issues: a strong course of antibiotics. I happened to take a strong 10-day course of antibiotics for a bad sinus infection and right after that all abdominal pain went away for good. 

Posts: 173
Joined: Nov 2015

Random pains are the worst as we fear the unknown - and rightfully so!  I too agree with others - I tell my onco (or her PA) about every ache and pain  that lost more than a couple days, not knowing which are important to monitor and which are not.  We sort out together was is important and what is not during my appointments.  So far this has worked well for me.

I too am a natural red head and mine came back white at first too (like little baby chick feathers).  It changed pretty rapidly the first month or so but is now back to its normal color.


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