Unexplained weight loss

Annietere

I was diagnosed in April of this year with DCIS after biopsy at the age of 40.  It was 2.1cm, grade 3, comedo type, ER-/PR-.  That same day, I learned that I was adopted.  I did the genetic testing and all came back fine.  The moment I found out I became frantic and began researching endlessly.  I was unable to sleep and, according to my husband, my appetite suffered.  I was constantly worried and ordered a million tests (blood tests, ultrasounds, endometrial biopsies, colonoscopy, etc).  I opted for a simple mastectomy with immediate reconstruction.  In the 3 weeks between the surgery and diagnosis, I dropped 11 pounds going from 131 to 120.  I became convinced that my cancer had already spread.  After the surgery, one focus of microinvasion- too small to test - was found.   It was well under 1mm in size and I was upgraded to T1mic.  I had no vascular or lymphatic involvement and both sentinel lymph nodes came back clear.  I continued worried about my weight and unable to put any of it back on.  none of the doctors were worried about the weight loss --  saying it was all due to anxiety and worry.  They finally agree to do a chest X ray and eventually a CT scan of my chest, abdomen and pelvis.  Both came back clear.  I managed to put on 3 pounds, but six months later I am still 8 pounds under my pre-diagnosis weight.  Did anyone else experience any weight loss after diagnosis?  Should I demand additional testing to discover cause of the weight loss?  Was the weight loss the first sign of distant recurrence for anyone?  I would appreciate any advice.

doxie

I once lost 50 pounds in a year of extreme stress and anxiety and didn't start gaining back any weight until the problem started to be resolved. I also lost 18 pounds from the time I discovered my tumor in a self-exam to when it was removed. I worried a great deal that it was cancer spreading, but since weight loss didn't continue, I knew it wasn't.

Anxiety seems to often cause us to add or drop pounds rather quickly. Since you have gained a little weight over the past six months and had several scans that came up negative, it could well be anxiety causing your problem. It's hard to go though this without suffering worry and anxiety. It's highly unlikely that the tiny invasion of IDC would lead to mets, and it appears the scans and test back that up.

It takes time for the fear and anxiety to recede. It may be helpful to find a therapist who specializes in either cancer treatment or trauma to help you. You may have PTSD and there are many who can help you deal with this.

Annette47

I did manage to lose a few pounds post diagnosis because of lack of appetite due to stress. Not as much as you but losing weight has ALWAYS been very difficult for me, so to lose some without trying was very unusual.

Unfortunately, almost 4 years later I have regained it and more

I have a very similar diagnosis as you, down to the micro-invasion too small to test except that the area of DCIS was smaller so I opted for a lumpectomy. I will honestly say that the fear of mets almost never crosses my mind because the risk of it from the very, very small area of invasive cancer is just so low. My worries tend to be more about local recurrence and especially new primaries (after all, if my body could do this once, what’s to stop it from doing it again? Well, at the moment Tamoxifen, LOL, but you get my meaning).

Annietere

Thank you for your reply.  I am trying to focus on the small risk of distant recurrence but cannot get the weight loss and inability to regain the weight  out of my mind.  I think it is the fear that is making the weight stay away.  

Annietere

Thank you for your reply.  You are the first person I have heard off that lost a lot of weight after diagnosis like me.  I think the doctors might be right, and all due to anxiety and excessive worrying.  I am trying to forget about it, but I am having the hardest time putting it back and that in turn fuels the anxiety. 

igay1ord

Annietere...I would say it's stress-related weight loss! I had just lost 50 lbs (took me 1 1/2 years) before I was diagnosed. As soon as I had surgery and my treatments started, I gained 40 right back ASAP! In all honesty, I was stress eating!

I know this is easier said than done, but please don't stress yourself out anymore! I'm of the mind that we tend to make ourselves sick by worrying about things too much! I agree with Doxie...you should definitely think about going to talk to someone. My primary care doctor just suggested the same thing to me about PTSD. He said that I may not be suffering now, but it will hit and probably when I lease expect it.

Good luck and keep in touch!

Annietere

Thank you for your reply.  I have been worried sick about this ( I have actually posted the same question under 2 topics as I am not sure of the correct procedure) , and I think I need to take a step back and calm down.  I have started seeing a therapist and doing some EMDR.  I had never experienced any sudden weight loss and when it came right after my diagnosis, I assumed the two must be connected.  I wanted to make sure I was having all the necessary testing done to rule out metastasis, and  was not sure if I needed any test beyond X rays and CT scan.  The doctors did not order a bone scan, but I am not sure if weight loss in the absence of any pain would be a symptom of bone metastasis- a am new to all of this and there is a lot I do understand!  I am driving myself crazy researching and trying to understand the implications of my diagnosis.     

ChgoDeb

I'm sorry to hear about your challenges & pray everything is OK & they get to the bottom of it.

I too am struggling with weight loss. Lost about 4-5 lbs after surgery & radiation (almost 3 years ago) and was just never able to gain it back. Now I'm down another 3 lbs and scared to death.

I've read that tamoxefin can cause weight loss.

I'm seeing my doc later this week.

KBeee

Stress leads to weight gain for some and weight loss for others. Hoping you have a plan in place now, and your weight loss has stabilized.

wallycat

I agree with KBee. For some, stress eating adds pounds; others lose their appetite when they are stressed. My twin and I are perfect examples. She stress eats and I lose my appetite.

Have you been checked for the more obvious and simpler things like diabetes and/or thyroid?

Shock and anxiety can definitely affect everything going on in our bodies.