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Anyone! Please help me! I am alone!

42inNy
Posts: 13
Joined: Dec 2012

Hi ladies. I'm so sorry for each of your diagnosis! I am sick to my stomach with worry and am just dreading the worst.
Last year i went to my gyn complaining something was just not right. Dull constant aches in my left side, extreme tiredness, loss of weight, terrible pain during I-C. He did a pelvic MRI ( I am allergic to ct dye) and all was normal. He ran a bunch if blood work, c125, hcg, he4 and a few more. All was normal. This was dec 2011. Was told to have colonoscopy- all was normal. The pains and aches were chalked up to IBS.
Oct 2012, just 2 months ago I had a pelvic MRI by a different dr for a different reason. Had a cyst on my hairline and they wanted to make sure it was filled with that cheesy substance. This was done by my reg intern. All was good- I was told. I went to see a Gyn Onc this week to get her opinion in this chronic ache and extreme tiredness and I confessed my worry for peritoneal cancer and ovarian. She said it is "so" rare! Don't even go there! Ovarian cancer is rare but peritoneal cancer is just really really rare. I am 42. She said she will send me for a tv ultrasound. I went yesterday and the tech said there was a moderate amount of pelvic free fluid. Is that the same as ascites? I then looked at the MRI that I had done in October for the cheesy cyst and I saw a notation on there that said " small to moderate amount of pelvic free fluid". My dr never mentioned it to me. then again, I never mentioned that pain since it was for the cyst.
The Gyn Onc has not gotten the u/ s report yet but I am soooo scared!! What could all this be? How much pelvic free fluid is normal?
I can't find anything on the Internet that suggests anything other than ovarian/ peritoneal ca or cirrhosis.
I am soooooo sad. I need to raise my children and I just know this is bad!!
I can't hold myself together!
I called my gastointergist in the meantime and although he is sending me for an abdominal ct without dye since I'm allergic - he said that if I had this last year, I would've been dead by now. So much going thru my mind.
Please, please!!! Can you tell me how you were diagnosed? They did not see any abnormality on my pelvic MRI except for minimal to moderate pelvic fluid. Would lymph nodes or masses been present??
On Myyyy I just can't catch my breath! I'm too young to leave my children.

jt25741
Posts: 23
Joined: Apr 2012

I am not a doctor...my wife has PPC for the past 3 years. The fact your CA125 is normal and HE4 too...this is a fantastic sign. My wife's disease tracked the C125 very tightly. PPC is an irritation of the lining...which releases CA125. The HE4 is newer and may respond in the few people where C125 is not effective or registering.

I notice you have not had a PET/CT. If you have any significant metabolic activity in the peritoneal cavity....it will show up in a PET/CT. Maybe you can ask for this as a final test to rule out cancer.

You probably have something......but PPC cancer....probably not. Whatever it is, be persistent....and change Drs if needed. You'll figure it out.

Also....inspire.com is a great site for all kinds of support...check it out if you need more or better advice..or just to talk with the community.

Best to you

Alexandra's picture
Alexandra
Posts: 1245
Joined: Jul 2012

First of all, please calm down. You are absolutely right to treat your symptoms seriously and seek doctor's advise. In my opinion self-diagnosis by googling or by polling people with similar symptoms on this board can only lead to one diagnosis (cancer) and is couner-productive for you and will cause unnecessary anxiety and depression.

I am 45 years old. In March 2012 I saw the walk-in clinic doctor for abdominal pain. Pelvic ultrasound showed a tiny cyst on 1 ovary and the doctor said let's watch it, see you in 3 months. In April pain continued and I started to get bloated. On May 3rd CT scan showed 9cm pelvic tumor, mets to peritoneum / omentum and severe ascites. CA125 was 1083. I had stage 3C metastatic ovarian cancer.

It does not mean that YOU have ovarian cancer or any kind of cancer.

Keep working with your doctors till you get satisfactory answers. Ask for second, third, fourth opinion if you have to. Good luck to you

baseballgirl71
Posts: 11
Joined: Dec 2011

Have your PCP withdraw fluid to check for Mesothelioma! Symptoms of Peritoneal Mesothelioma include free fluid, and weight loss. This does not necessarily mean that you have this just because you may have some of the same symptoms. Mesothelioma does NOT show up on CA-125. The main symptom in early stages is free fluid in the pelvis. You know your body better than anyone else. Keep pushing until you get the answers you deserve. DO NOT PANIC! Your kids need you to be calm while you figure out what is going on. You may contact me if you have any questions. baseballgirl71@gmail.com

Elissa

seatown's picture
seatown
Posts: 224
Joined: Sep 2012

I agree with the advice that you should try not to panic. You won't help your family by becoming alarmed. Instead of fearing the worst, why not hope for the best? The fact that so many lab tests and other measures came back "normal" should be at least somewhat reassuring.

On the other hand, you should keep looking until you find satisfactory answers. Six months ago, I too had varying and vague abdominal pain. I saw two doctors who both basically said, "Nothing wrong." When I finally told my PCP I was headed straight for the emergency room unless he could look further for the cause of my symptoms, I began to get diagnosed properly.

I can't give you medical advice, but the primary evidence of my ascites was an extremely swollen abdomen -- so swollen I couldn't wear any of my clothes. As the diagnostic process unfolded, my CA 125 tumor marker turned out to measure 2,738. So be thankful if yours remains normal. After five+ months of chemotherapy, my CA 125 marker was 53 a week or so ago.

I hope you find the answers to your questions and keep calm unless and until there's a valid reason to feel otherwise. If you're interested in more on the progress of my treatment, you can read about it at www.CaringBridge.org/visit/CaroleSeaton

Best Friend
Posts: 222
Joined: May 2011

Whatever gave u the idea that u had this? My mother's diagnosis was tough. she waited so long for docs to tell her what was really going on. but before that she never said i have this or that. self diagnosing urself is not good. it just leaves u to worry over nothing. if ur ca numbers were fine than i find it hard to believe u have this. they never checked my moms but after diagnosis hers was as high as 18000. and my moms ppc is slow growing so whatever doc told u you would be dead by now is wrong. my mom prob had hers for years.

 

42inNy
Posts: 13
Joined: Dec 2012

Thank you ll or your replies. I had the  abdominal MRI and it Did not show anything. I have this pain on my left ovary area and nothing is showing up. Yesterday at my new ( a different opinion) gyn- while she was performing the pelvic exam she touched an area that made me jump. This has happened in the past. She feels all tests have been performed. 

Pelvic mri

Abdominal mri

Ca125

He4

A few other tumor markers

Colonoscopy

Tv ultrasound

I'm really confused....... 

I know something s not right 

What other tests should I be asking For?

Bless you all!

seatown's picture
seatown
Posts: 224
Joined: Sep 2012

Don't know of any more tests for you.  Have you asked your doctors why you feel unresolved pain but nothing shows up on multiple tests from multiple doctors?  What do they say is the reason for that?

42inNy
Posts: 13
Joined: Dec 2012

The gyn Onc feels that even with peritoneal cancer something would've showed. I asked about seeding and she said by the time you feel symptoms- even if a sheet like type of cancer was growing you would see "something" ascites, ect... Want to believe her but finding it tuff to do so with no explanation for my symptoms. :-(

She said that even very high risk patients only get a tv ultrasound and ca125 test. She feels that I've had mris too and that she does not just open someone up to explore until something is seen on one of the tests. 

Im not 100 percent convinced. 

Ty

mymommarie
Posts: 3
Joined: May 2013

In April 2012, my mom, 81 years old, had a total hysterectomy.  She had a tumor, that penetrated the uterine wall.  The doctor gave a total hysterectomy and told us he removed everything and their was no lymph node involvement.  I think it was Stage 11 a.  He recommended that she be given internal radiation 4X.  She did all this and everything was great, when faithfully for her doctor visits and pap every 3 months.  In March, 2013, her sister was diagnosed with stage 4 esophageal cancer and she was quite upset.  She kept on complaining that she wasn't feeling well and had indigestion.  We took her to her regular doctor and he said she was a bundle of nerves and prescribed something to calm her.  On April 30 she had another visit with her gyn, and she mentioned she didn't feel well, and felt her belly was bigger.  He ordered a CTscan.  The results weren't good.  He said the cancer was in her peritoneal cavity with spots on her liver, not in the liver, and a tumor on her left kidney.  We are all devasted.  Didn't expect this.  She is going to see a oncologist on May 8, but she does not know if she wants do any chemo.  We really don't know yet, what he will recommend.  Thanks for listening.

Rosamond M
Posts: 86
Joined: Apr 2013

Very sorry to hear your news -it does seem that you have had to bear a lot of sad news lately. The decision to have chemo is a difficult one but if  reasonably fit and  healthy it is worth a try.  

mymommarie
Posts: 3
Joined: May 2013

Today, my mom went to a different oncologist, he gave her two options.  Doxil, or hospice (great options)  She really doesn't know what to do.  He told her that she could die immediately from doxil.  She asked what he would do, if the record, of course, and he explained that she is the president and needs to make the decision.  It is such a hard decision to make.  So very confused.  Has anyone ever had some good results with doxil.  Thank you for listening.

vickijune
Posts: 2
Joined: May 2013

Hi.  So sorry about your Mom.  Please tell her that I am a NINE year survivor of ADVANCED primary peritoneal cancer.  During the 9 years since diagnosis, I have had several cancer debulking surgeries (that have included removing 18 inches of my small bowel, a couple of feet of my colon, etc.)   AND  7 years  (84 months!)    of chemo.  AND please let her know that I had  48 months of  Doxil during that 7 years.  I have been told that I MAY have the record for the most Doxil!  WOW...The things that some folks brag about....LOL!!!!  

Please keep reading.  This next part is really great.... I have NOT had any chemo....NO chemo...for the past 18 months and my PET  scan is stable.  

I can't imagine NOT having Doxil.  I am active, I enjoy my life, I am happy, I AM HERE....And yes.... I am so very, very lucky.   Smile

I wish the best for your Mom. Negotiating cancer and chemo can be very scary at first. I can remember how excited and hopeful I was when I first met some long term survivors. 

I hope that my message brings hope to your mother...and to others who may read this column.  I would be happy to share more of  my experiences with your MOther (or with others) if it would be of help, provide hope, etc. 

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Thank you so much for posting!!!  So wonderful to read your story!  Gives enormous hope to many of us I am sure. I have been on chemo for most of the 18 months since my diagnosis (mind you only 3 rounds of Doxil as that didn't help me) but now on Topotecan. Many more nrounds to go to catch up to you and I hope to be around as long as you!  Keep up the great work and I wish you many years chemo and cancer free!

Julie x

vickijune
Posts: 2
Joined: May 2013

 You have a beautiful smile and an apparent positive attitude.  I believe that it is a quality that bodes very well for people like us and that it has contributed to my longevity.  I have always continued to live my life, participate in social and recreational activites that I enjoy, travel frequently, etc.....AND postpone chemo for a week or two, when necessary, to fully enjoy important Holidays, events and vacations.  Probably not what most docs would recommend.  But, I look at this condition as chronic and consider happiness (and a positive outlook) as a necessary part of living that facilitates good mental and physical health (including immune system functioning). 

I wish you many bright smiles and many happy years to come!

Vicki

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Yes I agree it is important to live life as normally as possible and if anyone starts treating me like an "invalid" I let them know I am "perfectly fine thank you very much"!   I do as much as I can that I did before.   Unfortunately had to cancel a trip to Canada this September (from Australia) as Dr felt it was a bit much at the moment so we are planning a number of short trips within Australia and hopefully Canada next year!

 

Julie

mymommarie
Posts: 3
Joined: May 2013

Thank you so very much for your wonderful, upbuilding post.  We are currently waiting for Memorial Sloan Kettering to give us a opinion on her scans.  It was so nice to hear positive news and to hear how terrific you are doing.  We just hope that she will decide to do some treatment.  The doctor was a bit of a downer, so I really don't want him to be on her team.  We need positive attitudes like yourself.  Keep on doing well, and I will keep you and everyone in my prayers.  Thank you so much again!!!

Angelique5's picture
Angelique5
Posts: 2
Joined: Sep 2013

I read your post Vickijune and you being a 9 year survivor gave me sooo much hope!

During all the surgeries you had, have you or anyone here had recurrent Bowel obstructions???

My Sister was diagnosed August 2012, first had chemo Carboplatin/ Taxol then debulking, then more chemo. Her CA125 went from 650 before surgery to 40 after the

chemo following surgery. but only 3 months later CA 125 increased to 120 and the ascites was back. So they started her on another chemo Topotecan HCL. And Just about the second week of that chemo tx she developed a bowel obstruction. After an NG Tube and 5 days in the hospital the obstruction resolved itself, Thank God

without needing surgery. One doctor said the cause was adhesions from the surgery, And another Doctor said it was the ascites causing the obstruction. They also said

she may in fact have recurrent bowel obstructions which is part of the Primary Peritoneal Cancer. Has anyone gone though these obstructions???

And just a few hour ago she was re-admitted for yet another bowel obstruction. I'm so depressed!!!!!!!!!!!!!!!!!!!!!!!! All I read web searching is that once bowel

obstructions start....... the prognosis is poor................... have you or anyone here hava any info on this??? I would greatly appreciate it.

God Bless you all

 

MJensen
Posts: 93
Joined: Oct 2012

Hi Angelique5,

I am sorry to hear your sister has to go through all of this.  It is an on going battle for sure.  I just wanted to mention that I have had several bowel obstructions and ended up in the hospital.  Most of them did resolve themselves without surgery but in Jan I did require surgery and ended upwith an ileostomy in my transverse colon.  They made a loop and the stoma is up in the left quadrant of my abdomen.  It took me some time to wrap my head around this but just deal with it now.  Mine were caused by the cancer and when I have the right chemo cocktail it has helped prevent further obstructions.  I was diagnosed with Ovarian cancer in 2010 that had spread to thru the peritoneal area.   Once the blockages were clearwaste Dr had me stay on a low residue diet.  I recently had another blockage in June but the new chemo I was put on cleared it without hospitalization.  I was also hooking to an IV daily ( at home) for hydration.  Hydration helps clear the blockage too.  I am currently going OK with no signs of blockage.  I am happy about that!  Prior to getting my ileostomy my surgeon had gone in laproscopically to take a look and see what was causing the blockage and it was clearly the cancer.  I also had a colonoscopy at the same time to check for adhesions.  The GI Dr removed any adhesions he came across.  I sope your sister can get through this one without major surgery but maybe a colonoscopy or laproscopic exploratory surgery might help determine the cause.  There are this root causes.  Could be diverticulitis....hope that helps.  Sending positive healing energy to all.   Michele 

Angelique5's picture
Angelique5
Posts: 2
Joined: Sep 2013

Hello Michele,

 

Thank You for your response. 

This is her second episode of Bowel Obstruction and as you have experienced, Thank God this second one did resolve itself also.

You made a good point because she was told that the cause was more than likely the cancer and not adhesions. and we also noticed that when she's on the "right" chemo she does not have these issues. We'll have to talk to her doctor about the hydration at home.

I'm so glad you dont have signs of blockages and I will pray for your continued healing and health.

 God Bless and Thank you once again.....for taking the time to responde.

Angelique

Robyn Angela
Posts: 8
Joined: Oct 2013

vickijune it is so great to read your story. I have stage 3c PPC and was diagnosed in July 2013. I'm still having chemo and take each day as it comes. Some are good and some are bad!. Your story gives me hope that I can live longer and see my children grow up. I'd rather be hit by a bus than have to say goodbye to my kids forever. I'm only 45 and feel I have much to live for yet.

Robyn Angela
Posts: 8
Joined: Oct 2013

Hi there your story is inspiring and I've read it about 20 times! It gives me hope and makes me feel a lot more positive

Kimrosec
Posts: 5
Joined: Aug 2014

Your story is so motivating, vickijune. It's also motivating that there are so many people who can provide emotional support to others while battling their own cancer.

pinky104
Posts: 78
Joined: Feb 2013

You may have a combination of things.  Hypothyroidism can cause extreme fatigue.  The opposite condition, hyperthyroidism, can cause weight loss.  Abdominal pain can be caused by a number of conditions including celiac disease (best diagnosed by a biopsy during a colonoscopy, but there are also blood tests that sometimes show it).  Abdominal pain can also be caused by ovarian cysts, but they probably would have shown up during your other workups.  I'm not positive about this, but I'm pretty sure that ruptured ovarian cysts can leave some free fluid behind (I used to work in a hospital ER where I had a job reading charts).  Abdominal pain, chronic fatigue, and weight loss can be caused by hemochromatosis, a genetic condition which causes your body to store too much iron. A ferritin test can be done to see how high your iron level is.  The reading should be below 150.  If it's above that, you could have genetic testing done to see if you have the genetic make-up to have this disease.  If you do, treatment is to keep taking blood out of you (often weekly) until your level gets down to normal.  I have this, and I had an MRI to see if any of my organs were damaged by it, which they weren't.  My genetic profile isn't the one that normally causes hemochromatosis, but one that sometimes causes it, and science doesn't know why it sometimes does and sometimes doesn't.  I think my iron ovrerload was caused by  my taking a lot of vitamin C, which causes the body to store iron.   I wasn't diagnosed until after I completed treatment for uterine cancer, and I was still short of breath when my chemo had been over for 3 mos.  Incidentally, the weight loss  from hemochromatosis comes about from liver disease caused by the hemochromatosis.  Maybe that would have shown up in your other tests.  I don't know.  Having your period tends to help hemochromatosis, but when you hit menopause, your iron levels start going up.  Abdominal pain can also be caused by diverticulitis, but that should have shown up in your tests.

My step daughter had the pain with intercourse due to a bad case of endometriosis.  I think fibroids also can cause this.  Probably these would have shown up in your previous tests, though.

Fatigue can be caused by eating too many simple carbohydrates, which make your blood sugar plummet an hour or so after eating these foods.  Complex carbohydrates make your blood sugar go down more slowly.  Whole grains are complex carbohydrates.  White bread, white rice, and many pastas are simple carbohydrates. 

Although I had stage IVb uterine cancer, I never had any weight loss.  I did have abdominal pain occasionally and I was often fatigued after meals.  My diet may have been at least partially the cause of that.  I didn't have any free fluid.  I had a mass show up in my peritoneum on a CT and PET/CT of my abdomen in late May of this year, but my CA-125 remained low.  I had a physical which showed no ascites.  My gyn/onc is having me have a repeat CT next week to see if the mass has grown.  He wasn't even sure that it was cancer.  It it has grown, he'll take it out.  If it hasn't, he'll probably keep an eye on it.  His PA told me it could be a fluid build up from my lymph node removal, even though I'm over four years out from my surgery.

I wish you luck in diagnosing your condition.  I always thought I had something wrong with me, too, and it turned out I did.  I'd thought I had celiac disease and kept getting tested for that since my mother had it.  It wasn't until I started bleeding that I was diagnosed with cancer. 

 

 

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