CSN Login
Members Online: 10

You are here

Not diagnosed but worried

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

I am new to this forum and have not been diagnosed with cancer, but am very concerned with my current symptoms:

I have been having some pretty significant gastro problems for several months, and have also had a tubular adenoma removed from my colon two years ago.  My GI refuses to do another colonoscopy stating "standards indicate another in five years".  She did order an abdominal CT which shows mesenteric panniculitis with inflammation around my colon, a polyp in the gall bladder fossa that cannot be biopsied via EGD (gall bladder removed in 2004-with a bile duct injury leading to 9 days of ERCP EDG and stents), and a small spot on my liver(which they "think" is fat). So re-image all of this in six months.  I had an EGD, several fundic polyps were removed for biopsy and were benign, as well as gastric inflammation. I have not been happy with my GI doc or her staff some time. She is very dismissive of my concerns and just wants to shove medication at me. I am scheduled to seek a second opinion from another GI on Dec 22 (first available), however, I haven't been able to properly eat for a couple of months, have lost 15 pounds since the end of August​, have abdominal pain, nausea and bloating, and have had blood in my stool for three days now. I really don't want to see my current GI for this as she blames everything on gastroparesis (which I have had for 14 years and have never had any symptoms from, was incidentally diagnosed during gall bladder testing). I also have a strong family history of stomach and colon cancer. I am torn between going to see current GI to evaluate the new symptom of bleeding, or waiting to address it with new GI doc in three weeks. ​Other issues at same time are below, mind you this is all just taking place.

  Found a small lump in right breast after waking to a red sore area in my right armpit.  The mammo and ultrasound did not find anything in right breast, but showed new asymmetry in left breast which they want to re-image in six months.  I have very dense breasts and have a history of calcifications as well.  Wondering if I should go ahead and ask for a MRI of breasts to be sure, and yes there is a family history of breast cancer on both sides of family.  Genetic testing only positive for ATM (not sure what significance this holds for me at this time)

As if all this craziness weren't enough, I had my annual dermatology check-up (lost a first cousin to melanoma), and I had a dyplastic nevus with severe atypia (doc said was well on its way to melanoma).  He re-excised this, and I have to go back to him in six months for a complete check- up.  Any suggestion are welcome and much appreciated.

Blessings to all :o)

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

Having any of the suspect symptoms is cause for alarm and testing.  It could be that your current doctor is too used to what you've had that they aren't willing to dig deeper for other things.  That or maybe they are right which is a strong possibility.  Thing is, there are a myriad of things that can look and act like cancer but obviously aren't.  Get the second opinion but pray it is what the first doc said.  You don't want this.

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

Getting a second opinion is a VERY wise idea. The 22nd will come around soon, and hopefully you will find a more compassionate GI Doctor who is willing to listen to your concerns. 

Of course, I hope they don't find Cancer, but I do hope they find out what is going on, because, as you know, your symptoms are not normal. Something is amiss, and you need to pinpoint the problem so that you can address it properly.

I pray that you will be able to take care of all your medical issues. They say it comes in threes, and it looks like you are definitely experiencing three different problems. I hope NONE of them are Cancer. But again, as I said above, I do hope they get to the bottom of all of your symptoms. 

Keep us informed, and good luck on the 22nd. 

Tru

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Thank you both for your responses.  The GI issues are totally impacting my quality of life.  I have no energy and I have always been super energetic and active.  Of course this could be due to lack of nutrition too.  I love to cook for my family, but it worries them when I don’t join them for the meal. I have very little appetite and when I do eat I am nauseous and very bloated (it doesn’t take too much and I am too full to continue).  The diameter of my stools are ever so slightly larger than my pinky finger and are flat on sides. Not to mention I never feel like I have fully evacuated (Pressure or fullness sensation even after going).  Hopefully, the new doc will be more willing to address these things as I cannot imagine feeling like this all the time.  

    Just curious what your experiences/preferences have have been with imaging?  I mean do you feel one is preferred over another for clarity in locating problem areas in colon and Mets?

 

I truly appreciate your input and wish you both well :0)

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

As much as I hate them, because I cannot control my bladder for the duration, I am all for PET scans.  My regular CT Scan missed a 2.2 cm liver tumour, but the PET lit it right up. 

Insurances are hard to convince when it comes to coughing up for a PET. My Oncologist always fought that battle for me, which I apperciate. 

I've never had an MRI, just PET and CT scans and of course the CEA blood test which has proved to be efficiant in my case. 

Tru

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Thanks Trubrit. 

I have read quite a bit about the PET scan.  I would really feel better having another type of imaging such as that performed since I have read about CT missing things. My CT was a double contrast method, and did show a few anomolies but it also said something about debris. Of course the spot on my liver scares me too as I am not a drinker, I'm not overweight, and I eat relatively healthy.  So when they say the spot on my liver is "probably fat", I'm a bit skeptical.  The inflamation in the mesentary area of my abdomen around my colon worries me too.  I know all tests are not 100 percent fail proof, but I feel a different imaging method would be best.  If I were able to eat without feeling sick I probably wouldn't be as concerned, but given the other issues starting to arise I really feel like something is being overlooked.  I'm not sure my insurance company will cover a PET as I am not diagnosed.  I don't know what the protocol is for ordering that type of scan.  What is the CEA an indicator of? 

Bless you for all of your knowledge and willingness to share of your time :o)

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

Carcinoembryonic Antigen Test. 

It measures a protein in the blood. Some types of Cancers have higher than normal levels in the blood. 

For some, like myself, it can be quite accurate. When my liver tumour started to grow, fast, my CEA jumped rapidly.  For others, CEA isn't such a good indicator, being normally high or staying low in spite of the presence of Cancer. 

There are non-cancerous tunours that can grow in/on the liver that many people have, called Hemangiomas.  Maybe that is what you have and not a fatty cyst. Not sure how they would check for that. I have one, that they watch on my regular CT scans. Mine doesn't grow or shrink, so they tell me it is not malignant. 

Good luck as you move forward.

Tru

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Thank you so much for your wealth of knowledge.  You are a blessing!  I wish you all the best :0). I’ll post as I find out anything new.   

Hope all goes well for you too. 

Annabelle41415's picture
Annabelle41415
Posts: 6216
Joined: Feb 2009

It sounds like you have a lot of issues and concerns going on and no one is more concerned than you and that doesn't seem fair.  What you should do is contact the new doctor and let them know of the bleeding now and ask them of their opinion.  Dec. 22 doesn't seem that far off, but it's an enternity to one that is waiting so ask them if another appointment comes up sooner.  With a family history your current doctor should have been more vigilant in your concerns and testing.  I'd be glad to get rid of them as soon as possible.  Wishing you the best and please keep us informed. 

Kim

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Hi Kim,

   Thank you for your support.  It's tough when you know something is not right within your body, but the doc isn't pursuing it further.  I am sure they have the standard tests that they rely on, but sometimes it requires an outside the box approach when answers aren't too clear.  I truly hope this new doctor will be more proactive and also willing to look at the whole picture.  I know there are some awesome doctors out there, and I have been blessed with many of them, but there are also some that are less than sub par.  I know I have to listen to what my body is saying to me, so why don't they LOL. 

   Of course, I continue to lose weight and have reduced my level of exertion (as I am normally a very active person), so my family is becoming more concerned, since I'm not my usual bubbly self. I am being proactive, and trying to assert myself as far as doctors go, to get more answers.  My PCP wants me to come in this Friday for a full physical, so I will try to see aboout the CEA that Trubrit recommended and I will try to get into new GI sooner given the new symptoms.  I will also make the hour drive to pick up the CT scan and take it with me to new GI doc.  Maybe that will initiate a new course of action.   Thank you kindly for your time and considerate words :o)  You are all such a blessing.  Healing prayers for all :o)

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Just a follow up.  I went to my PCP yesterday.  We had a nasty winter storm blow through, so it was a bit rushed as they were closing their office early. Needless to say everyone was annoyed that they had to wait around for me ( I live an hour from the office so they told me to go ahead and come since I was almost there).  I wanted to get the CEA that Trubrit recommended, but the lab grabbed me to do typical bloodwork before doctor had even seen me so they could leave.  Nice huh?  Since I will see a new GI doc on the 22nd, my PCP focused on the breast lump since she had already recieved the mammo and ultrasound findings.  She could feel the lump right away-even though the rad tech didnt see any area of concern on US.  Given the asymetry seen on mammo on left breast and the palpable lump on right, I have been referred to a breast surgeon group about an hour or so away.   The drive will be worth it, if they can get to the bottom of one of these issues.  Maybe it will enlighten us as to what is going on with the rest of my body-with any luck.  As for the CEA, I will discuss this with the new GI doc after I see how he wants to approach the bleeding, weight loss(according to scales yesterday, have lost another two pounds), abdominal pain, narrow stools, and terrible bloating I am dealing with. 

Sorry for rambling, just wanted to update after seeing doc.

Blessings and healing prayers for all and thanks for your advice :o)

Annabelle41415's picture
Annabelle41415
Posts: 6216
Joined: Feb 2009

You have been through so much this past couple of months and the extensive testing of every part of your body it seems.  I'm so sorry that you are having to deal with so much all at one time.  It's not very pleasant and it's got to be very frustrating especially going from one doctor to another and one test to another.  Just a note about the CEA, if it comes back normal it's not always a good indicator, mine never was.  I'm hoping that the new doctor will give you some better information and lead you to a path that will address all your issues at one time.  It's better if you have someone that can either recommend or be in connection with a team than you trying to search it out on your own.  You never have to worry about rambling on this board - believe me I've done my share.  You are new here and we want to address every concern you have.  Thank you for the update - it helps us to help you.

Hugs and I'm praying for you.  Kim

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Thank you Kim.  I appreciate your suggestions.  I too hope the docs get to the bottom of it.  I know these things can be time consuming.  I had genetic testing done when the old GI doc found my tubular adenoma, and it showed positive for an ATM variant.  They of course do not know what that may indicate for me as it has not been studied enough.  It seems everything that is found is not conclusive.  I guess I am one big anomoly LOL.  I have heard that the CEA is only a good indicator for certain people and given my path thus far, I am probably not one of them :o).  I will continue to post as I get info as this is wonderful source of knowledge and understanding.  What a blessing you all are.

Love and healing prayers to all

Annabelle41415's picture
Annabelle41415
Posts: 6216
Joined: Feb 2009

Whatever arises in your treatment and your situation, personal or medical we have been through it all.  I've been here a long time and even now some of the treatments could have changed, my knowledge and fear, and treatment symptoms haven't changed.  I'm here to help you if you ever need it.  Like I've said my CEA wasn't a good indicator so therefore, it doesn't do any good for me.  Hoping that you can get some answers soon.

Hugs!  Kim

Fab65's picture
Fab65
Posts: 25
Joined: Nov 2017

Thank you Kim, that is really sweet of you :o)  I guess God places us all in each others path as we are needed by one another :o)  Have you by chance heard of anyone having clear CT scans that actually missed pertinent issues?  I am wondering what, if anything I should be pursuing besides a colonoscopy at this point, or if I should just sit back and wait it out.  When my old GI first said we will repeat the CT in six months, I thought "good Lord I can't go another six months feeling like this".  Alas, it's already been almost two months just trying to get to the bottom of everything going on.  I guess, like everyone here, I worry that even the slightest delay will worsen the outcome if they are overlooking the actual problem.  I have had so many family members diagnosed and lost (some at very very young ages) because issues were not caught until it was too late to eradicate.  It makes me worry when docs can't figure out what is going on.  I have heard so many say "don't worry until you are diagnosed", but that is tough when your life has already been dramatically impacted as far as energy levels, and ability to do the normal everyday things with the same vigor.  Did you happen to experience extreme bloating with the smallest intake of food?  It is so uncomfortable I find myself unable to eat properly.  I know this can occur with many things, but other problems are slowly creeping up that are adding to the list of symptoms.  I am very thankful for the kindess of all here giving of their precious time to assist others.  You are a blessing!

Hugs,

Fab

Subscribe to Comments for "Not diagnosed but worried"