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Worried that "it" is back!

alice092948's picture
alice092948
Posts: 1
Joined: Oct 2013

I was diagnosed 2 years ago and went through 2 rounds of chemo and 30 days of radiation. Doctors found no evidence of disease after 6 months, but the fact that it was already in my inguinal lymph nodes has always bothered me. Now I am worried about stabbing pains I have every once in a while in my anus and groin. I have some other vague symptoms, but after radiation and chemo I got used to all sorts of weird and unwelcome things going on in that area! I guess I have been reassuring myself that I'm not losing weight or anything...but now I'm wondering if anyone else has experienced the pain I've described? I have an appointment (routine check) in June, but wonder if I should try and get in sooner?

mp327's picture
mp327
Posts: 3324
Joined: Jan 2010

Over the past 5 1/2 years from the end of treatment, I don't know that I've ever had actual pain in the area, but I have had skin issues--mostly irritation from bouts of diarrhea.  I think cancer makes us have a heightened sense of pain and discomfort, but that's a good thing.  If I were you, I'd call and ask if that appt. could be moved up.  Peace of mind is wonderful and long-term anxiety is not.  I would make that call.  I hope it's nothing serious.

lp1964's picture
lp1964
Posts: 974
Joined: Jun 2013

Even though I had rectal cancer I went through the same treatment as you and surgery. I has been almost a year since radiation and 10 week since chemo and I have all kinds pains in the area, hips, groins, lower back. It's just the way it is. Hopefully it will get better with time.

At the same time I believe we have to periodically look into problems to make sure.

Laz

Clovergirl
Posts: 48
Joined: Dec 2012

I felt really good for awhile. I can honestly say I felt normal.  My last treatment was over a year ago. I was Stage IV and also had lymph node involvement.  I had a bunch of complications from treatment but healed and felt REALLY good for awhile.  All of a sudden I started having all sorts of aches and pains.  Everything from cramps in my feet, pelvic pain, anal pain, hip pain, skin issues, I could keep on going.  I have my follow up Thursday and I too am worried about reoccurrance.  However, I also know from reading the posts on here that these are all very common side effects.  We may just be getting them later than sooner.  I'm glad I have the appointment on Thursday though.  Hopefully you can get your appointment sooner.  Hoping things go well for us both.

RoseC's picture
RoseC
Posts: 533
Joined: Jun 2011

I'm over five years out now and symptoms have been varied and totally weird as far as timing. Sometimes stabbing pains in the lower right belly quadrant (which I think are adhesions from the radiation - they've been there since radiation and have not gotten worse but not better either - was scanned, nothing found - chemo doc said most likely it's adhesions). The occasional runs - the runs actually started at three years out, weird, but have become much better with diet control and Immodium. Hip and back pain, some of which I had prior to treatment. A lot of pain (disabling actually) when walking more than 250 feet at a time. Had scans and PT, my back has spinal stenosis - I had a little prior to treatment but it's gotten worse since. (Could be age related too - I just turned 60 last December).

I've had exams many times since treatment and none of these side effects have been associated with recurrence. Hope everything turns out fine for you too - let us know what happens.

sandysp's picture
sandysp
Posts: 859
Joined: May 2011

I was T2N1 and groin pain always scares me, but I get it a lot. Next comes leg heaviness and then spasms, limping. I call my Cancer Rehab Dr. at MSKCC who prescribes Lymphedema therapy and compression hose. I wear the compression hose and a very tight girdle that keeps me covered from under my breasts to my toes all year long. Compression does not work without the MLD treatments which is a gentle massage.

I was told I have primary and secondary Lymphedema. The first is what I was born with due to an immune deficiency called CVID I did not know I had and the second was likely caused by the cancer treatments in the pelvic area, both by my first and second diagnoses.

Good luck.

I hope this information is helpful.

I always think it's cancer in my bones when my groin hurts just like you. They can't assure me absolutely it's not, but the treatments relieve the pain and my legs always feel lighter, so I believe the Rehab doctor is right that it is far more likely I need to take care of this new chronic condition called Lymphedema. I think of it as something akin to a disease like Diabetes. You have to be vigilent to lead a normal life.

Sincerely,

Sandy

gabby_ca
Posts: 26
Joined: Jul 2006

Hi all,

I am 8 years NED of disease I remember for years always worrying about signs and symptoms of my cancer coming back.  I think this is our way of dealing with feeling so betrayed by your body. This cancer literally comes and kicks you in the 'ass' and sends you reeling.  I remember going into the hospital about 3 years NED and almost crying that my stomach hurt so bad.  I envisioned the cancer spreading to there.  No, it was not.  It was pulled stomach muscles from landscaping with boulders for 2 days.  Why didn't I think it was that?  lol

Last year, I broke both bones in my lower leg jumping off of the tailgate of my pickup truck.  Once I found out it was broken, I immediately thought that it was the cancer going into my bones and that made them weak and break.  No, I was wrong there too.  My bone density was fine.  I just landed wrong, tis all.

After 8 years, I have learned that yes, I need to pay attention to my body but I also need to be positive without keeping my head in the sand. I think I am at a point where I am finally in control and I know what is right with my body for the most part.

I am not really sure when I went from the person who 'has' cancer to one that 'had' it instead.  I know it's really hard to not jump to conclusions thinking that it's back again but one day I realized that I had indeed been changed by cancer and it made me stronger. 

This cancer is really a 'good' one to get if you indeed had to pick one and I know that sounds cold and callous but it's not intended to be that way.  There are WAY worse cancers to have than this one I think.

Gabby

 

mp327's picture
mp327
Posts: 3324
Joined: Jan 2010

We all have those from time to time.  Our brush with cancer has heightened our sense of awareness when we feel something different.  I am pretty good at giving myself a little time to see if those panges or sensations go away before I panic and call my doctor.  However, some pains should not be ignored, such as the wierd pains I began having in early January 2013.  On a Sunday afternoon, as my husband and I were out running errands and shopping, I became ill and had a sudden onset of pain under my right ribcage.  I had to leave the store and go sit in the car to wait for my husband.  I got home, laid down, and after awhile I felt better.  Later on, I ate some dinner, only to become very sick a couple of hours later.  After several times of vomiting, I felt much better and felt okay for the next couple of days until that Tuesday evening, when the severe pain came back.  I went to bed in pain and finally got up and laid on my bathroom floor where it was cool.  Soon the vomiting began and the pain just got worse.  I woke my husband up and asked him to take me to the ER.  It was a good thing I did, as I had a partial small bowel obstruction, which had it not finally cleared on its own after a couple of days in the hospital, I would have required emergency surgery or experienced a bowel rupture.

The reason I am sharing this is because there are some pains we become familiar with and can usually attribute to something minor and/or temporary.  However, if anyone who has ever had pelvic radiation experiences the kind of excruciating pain I had, do not ignore it!  Although it was never confirmed, the doctors' said the obstruction was most likely due to adhesions/scar tissue from the radiation treatment.  There's really no way to know for sure.  I have had a few less painful episodes since and am always prepared to dash to the ER if things get worse.

Most of the pains we feel are not a return of the cancer.  However, if something is new or doesn't seem right, a call to the doctor is always good.   

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