Someone walk me off the ledge please

europa · 10-22-2013, 03:46 PM

So I had some pain about 3 inches from the edge of my waist towards my belly button about 2 months ago. They did a CT scan without contrast because I'm on Metformin and found nothing. Then they did an ultra sound and found nothing. Then I thought I threw my hip out in belly dancing class (lol) and the darn ortho got scared because of my bc diagnosis and threw a lumbar and pelvic MRI with no contrast...again found nothing and chalked it up to muscular issues.
So, my pain under my right rib, around my waist area went away but recently came back. I'm scared to death it's liver mets. But I keep thinking that if I had liver mets something would of shown up in one or more of all those bloody scans they did and my blood work last month came back normal.

Need some wisdom or a good slap in the face.

tricia keegan · 10-22-2013, 04:03 PM

Hi Europa,

Sorry I'm late coming in here but my understanding is that pain from mets doesn't just go away and come back but is continuous and gets worse, I also think one of your scans would have thrown up something so whatever this is I doubt it anything as sinister as cancer but would discuss with your Dr to get answers.
Good luck and keep us posted!

'lizbeth · 10-22-2013, 04:18 PM

Wow, it could be a lot of things.

How long have you been belly dancing? It could be referred pain. Are you doing lots of hip hikes? Quadratus Lumborum trigger points refer pain to the hip area around the Greater Trochanter, so that makes sense.

I looked at the mid abdominal trigger point pattern and it matches the description of your pain.

You could try a massage therapist that specializes in Neuromuscular Therapy (find an experienced one) or try acupuncture to gain some relief.

I suspect that the belly dancing is contributing to the trigger points, you are working those poor sarcomeres overtime in the abdominal muscle fibers.

Belly dancing is tough. I have a friend who used to compete.

KDR · 10-22-2013, 05:31 PM

Well, Europa, I had liver mets and never had an inkling. No pain, no indication at all there was anything wrong in my body, let alone cancer.
I would have some blood panels done if your numbers are indicative of your body's relationship with cancer.
Belly dancing is supposed to be therapeutic. I was just on the phone with my daughter's instructor and she'd like me to start. I have been unable to do yoga since the disastrous surgery. But I think I'm going to give it a try; she says it'll help with healing.
Hoping for you,
Karen

europa · 10-23-2013, 03:19 PM

I think it's something to do with my bowel movements. The pain comes and goes and moves around an inch left or right. But it's at it's worse if I haven't pooped in two days. I have been dealing with constipation issues since chemo two years ago. I have an appt with my Onc in two weeks and will be getting blood work done. So, crossing my fingers this pain is poop related. I can deal with poop issues. That, I can do.

tricia keegan · 10-23-2013, 03:41 PM

Ouch thats no fun at all, have you tried of asking for a stool softener or something else to help you?

'lizbeth · 10-23-2013, 08:02 PM

oops, you should be able to poop, 1-3 times per day. Food in, food out.

I bet Aussie Girl has some great suggestions. Where is she?

KDR · 10-24-2013, 01:39 PM

Papaya.

Karen

europa · 10-24-2013, 05:50 PM

Papaya? Really? I could do that!
I actually went to see a dietician today and she is running a bunch of tests. They are testing for food sensitivities, cortisol levels, CBC, metabolic panels, AC1(?) and a variety of other stuff. They also want me to start taking supplements from a company called Standard Process which makes supplements using food instead of man made supplements. Any thoughts on that?
I have been throwing back Metamucil for a couple of days and it seems to wrok, but there just has to be a better way.

Becky · 10-24-2013, 06:20 PM

My daughter had what we thought was a gluten intolerance (did not test positive for Celiac but certainly there was a gluten problem) and then other stomach issues. Testing galore. We started to eliminate the usual suspects like dairy (if she eats a gallon of ice cream, there is a problem but if its normal its okay). Things like broccoli or gas producing foods - gotta be careful. She has constipation problems since birth. Doesn't tolerate metamucil or Miralax well and is very lazy about it. She is 22 yrs old. Also since birth, she has had humungous tonsils. So I finally forced her to get those tonsils removed because they are literally like two golf balls in her throat. So, on Oct 2 they are removed and she still had adnoids which the doctor said were also abnormally large and those were removed at the same time. So now, the pain etc from that is done and she says, I want to let you know that my stomach hasn't been bothering me at all. Nada. And, yesterday she went to a Chinese restaurant and ordered Lo Mein. I asked her how she felt and she said, Great! Why? And I told her Lo Mein noodles are wheat noodles (gluten) and not rice noodles.

My point, the digestive system starts at the lips and ends at the anus and anything in between can be the problem. Maybe the constantly inflammed and enlarged tonsils caused a total imbalance and for someone who is normally a constipated person, it wrecked havoc. We are hopeful this exaserbated a small problem. So I am glad you are getting everything looked at. Something that seems totally unrelated can be very related. A food allergy that you wouldn't even think (I have a friend who is allergic to poultry and who would think that as it is rare). Everything is connected. They thought it was the appendix until we said, can't be as it was removed long ago in an emergency. It is a hunting game and it could take time but you will find out what is the culprit for you. We are hoping we found ours and it was so unlikely. I would never have thought about it and I think about everything. Hugs to you

'lizbeth · 10-25-2013, 09:09 AM

If you are going to add fiber - add lots of water too. Wow, all these ideas are great. I hope you find a solution and get relief soon.

Aussie Girl · 10-26-2013, 12:28 AM

Dear Europa,

Regarding constipation, which I must say would fit with what you've said about your symptom, a lot of ideas can be found at this prior thread

http://her2support.org/vbulletin/showthread.php?t=58957&highlight=bowel

I use metamucil (psyllium) for my main soluble fiber and Normofibe (Sterculia) for insoluble fiber. Also a good general diet with lots of fruit and veges.

I have either antibody negative celiac disease or non-celiac gluten intolerance - never been able to work it out despite many attempts. I also have severe lactose intolerance. I'm not going to go into that now - it's a minefield and most likely not relevant to you unless your dietician finds a problem. If she does - start another thread on this!

It may be worth your while looking up the web and talking to your dietician about FODMAPs. This is an acronym for various foods that cause irritable bowel syndrome (there are other causes as well) The Australian Guru and a leading researcher on this and other dietary intolerances is Sue Shepherd http://shepherdworks.com.au/ . She has an excellent book that explains it all http://shepherdworks.com.au/shop/food-intolerance-management-plan

Another resource is this http://www.med.monash.edu/cecs/gastro/fodmap/

Hope that helps

Aussie Girl

CoolBreeze · 10-26-2013, 04:41 PM

I think you are on the right track. I have liver mets. It didn't hurt for a long time, certainly not at diagnosis, but when it did it wasn't anywhere near where you describe. It's much higher, near the shoulder. Your liver isn't near the waist, your colon/intestines are so that's why I think you are on the right track now.

Cancer in the liver is pretty clear on scans so I'm sure they would have seen it.

In fact, they diagnosed me because I complained about lower back pain - in the area you describe but in the back. They did an abdominal CT and discovered liver mets, but it had nothing to do with that pain. Now, I know that it's muscular - post-mx and recon my shoulders have never been right and my back has been trying to compensate. I can feel that pain when I move my shoulders certain ways, which I didn't know or understand way back when.

I would say that since you are a belly dancer your muscles have been weakened by all the drugs you've taken and probably you suffer from that more than you know. And, if you still have constipation issues years after your treatment, than you understand it takes a long time to get back to normal. I don't think we all realize how serious these meds can be on us and how long it can take to get back to where we were before.

I think you can feel relieved that it's not mets and work on what it is. Keep that dancing going and colon lubricated.

LOL.

Adriana Mangus · 10-26-2013, 06:02 PM

Hi Europa,

You have had all the tests done and it did not show cancer in the liver, because you don't have it!!

I have been in pain since I came back from Europe- - early September. I did so much walking that I threw my back in Barcelona, just like you I had an MRI of my back, the test came back negative for cancer. Im still in pain, and have been taking Relafen to alleviate the discomfort in my lower back. Also, have had pain under my right breast for a long time, it turns out is fibrosis-- I drink a lot of coffee. Remember-- at least on my part.. we are not spring chickens any longer, anything new we do or a new routine we add to our life it will have an impact in our overall health and body. I started yoga six weeks ago and sometimes the pain gets worse, but for the most part, I'm doing ok.

Think positive!! Take care,

Adriana

europa · 10-26-2013, 06:13 PM

Oh ladies, thank you so much for all of the responses. Aussie Girl, I toasted to your name this evening as I threw back my Metanucil.

The dietician I went to go see sent me home with a variety of tests. She is testing my thyroid function, my cortisol levels and is doing a food sensitivity test. She is also going over my blood work for the last five years to see what my body's chemistry was pre cancer, during cancer and after cancer. I like her, she's thorough. She also requested a copy of all of my MRIs, CT scans, Pet Scan and Mammos. Again, I really like her.

So if she tells me something groundbreaking or gives me some good stuff to share...I'll share it in 3 weeks when I see her next.

starwishn2 · 10-29-2013, 10:03 PM

I'm coming in late on this thread but MiraLax works great for constipation. It doesn't give you the bloaty sometimes gassy feeling that Metamucil can give you. I've dealt with this "condition" my entire life. MiraLax is a powder you can mix into any type of drink. Can't really taste it. It pulls the water from your body into your system and WHOOSH... you feel much better. Good luck~
Jeri