Undiagnosed symptoms similar to ovarian/colon cancers, very worried

[JessieJ21]

I'm new to this, so I've never shared my ex & concerns.. I never thought experience wi on my situation right n started around 3 ye getting worse and bot me a lot. About 3 Ye cyst(which somet think it has been the only that's possib because I've been to the er fo from th constipation, night sweats, back pai (narcotics even stop the pain, when i have could d the pain btw I'm only 24 everytime cyst your left ovary after doing ultrasounds compare the new us to the previous one? shapes as if it were the same cyst they are cyst disappeared on its own.. so my though started seeing a new gyno after my previou talked of checking me for endo but she wan cancer since cancer runs in the family both missed an appointment because i couldn't was no longer there. my new gyno la seen every few two to three months i end up in uti and an ovarian cyst and bacteria vagino believe the said divert so I'm not too sure o what's going on, frustrating and not until la appearance a it got a little bigger and they be consi nonfunctional and now in jan this foll of abdominal. pain causing my most re us like normal in er well my doc called with possibly a hemorrhagic cyst it hasn't chang that would be wrong it grew 1.4 Cm from th its a hemorrhagic cyst i thought those were can it go from partially not functional to a functional cyst also have free pelvic fluid i asdsume is fro also have constipation and then i have my fatigue, and a few other things i kno possibl nodes in my groin and neck particularly th little bigger than the rest then not swollen over a month and my last er visit my doc s blood tests a stool samples no infections s speciali a neurologist(for other health probl and weak lately i just lost my job they calle that ultrasound and fired me because i gue have medical issues right now which is very i almost feel like some doctor try to rush m certain things or doing certain tests becaus so i feel they don't take me seriously somet tried me on birth control it didn't help in st it had grown some. She talked ab sugery an necessary since the time afte was the time they said it changed in appearance they sai like one cyst wit second one growing off th free pelvi then too. nothing has been said b o but maybe my gyno will contact me and scan sent to her too.. Anyone share any sim very appreciated.. You can also email me * are doing good.. lso i have not been lucky enough to have a Baby yet sometimes i think i just never will.. and i have been having a cough for a very long time and difficulty swallowing even sometimes my own saliva but not throat pain, i have frequent nausea and sometimes at least once a week for a month or two sudden vomit.. and loss of appetite has affected me for a while i just feel so full could be the constant constipation(like 3-5 days a week:(  Also my most recent scan they say I have a left adnexal mass (possible hemorrhagic cyst) i sometimes get the stabbing along with throbbi and constant dull ache but its on the same side mine.. i read hemorrhagic cysts can cause pain because of it bleeding. Does anyone have pain i your hips or tailbone ever hurt like they are bei pushe'd on by it mine do but idk why.. its not bi its bigger than 3 cm but less than 5cm.. and the also said they don't know if it was coming off fr just the ovary or the tube.. i didn't know they c come form from the tube too.. Well I had my gastroenterology doctor appointment today and he is scheduling me an appointment to have a colonoscopy:( I was actually supposed to have a follow up with my primary caregiver to have one after a trip to the E.R. and they said I possibly have Diverticulitis to confirm the diagnosis because colon canc (I realize some of my words in my first post are cut short.. idk why that happened. Hope you can still understand what I'm saying.. when I said narcotics don't even help it cut don't out completely so just know the narcotic do not seem to help my pai)..ers can be misdiagnosed at first as diverticulitis. I am a little worried because of all my symptoms and I thought Diverticulitis was a misdiagnosis when they told me.. but Id rather it be that then colon cancer, oh I forgot to talk with him about my lymph nodes if he is who i am supposed to talk to about it, what do you think my chances are of a misdiagnosis?

Well I had my colonoscopy Monday and I was a little out of it but I'm pretty sure they said they didn't find any diverticulitis (so i was misdiagnosed) they also said they seen no tumor or polyps just internal hemmorriods probably from being constipated and straining, but he said they took a little tissue from the lining for a biopsy Why's that necessary when I have no tumors,polyps, or diverticulitis? Something must have concerned them?

[HVAC]

I am glad for you so far so good.

Alex

[JessieJ21]

Thanks so much for everything. When she went into have a look it was an endometrioma not a dermoid, thank god so she just drained it and found another kind of cyst but smaller on the right side and she removed it, she did find endometriosis not mild but not too severe either. I'm still looking into excision for that. I was recommended Dr. Barki at west michigan cancer center in kalamazoo,Mi. & he takes my insurance(: Also she ran a blue dye test on my tubes and the left was great but the right is a little blocked up..

[HVAC]

I am thinking about you. Good luck Monday.

Alex

[JessieJ21]

I haven't come back to this in a while I'm mostly in the Endometriosis Forum but I am having surgery Monday. Shes going to remove my dermoid and send it in for biopsy just incase, she said she may have to remove my left ovary as well but only if she has to. I hope she won't but maybe Ill still concieve with the right side. She's also doing the blue dye test on my tubes. Unfortunately I have to wait to raise enough money for excision of any endo.

[HVAC]

I have gone to leading journals and they all say I am statistically dead. I am not dead so who should I believe. I stopped reading. They are not accurate. People are not statistics. As long as you get good care many of us can beat the odds.I had an aunt and a grand mother dead at my age. The treatments for Ovarian Cancer were terrible. In 5- 20 years what they are doing today will seem so old fashioned. The trick is not worry about Cancer but if it shows up get to the best hospital you can to treat your particular Cancer. I did not go to the best hospital at first and that was my mistake. I know am getting cutting edge care. I went from dying to having all my tumors shrink. I got into a clinical trial the next step beyond just chemo. There is always hope.

Worry is trying to control what you can't usually what I worry about never comes to pass. When I was young I worried about breast cancer. I even got into a study to do more mammograms. I ended up with Multiple Sclerosis and then stage 4 Ovarian Cancer, no breast cancer.

My doctors worry about the breast cancer I let them, they get paid the big bucks let them worry I have better things to do.

Alex

[JessieJ21]

Hi Alex, Hope you are doing well. Its been awhile, I was just doing some research and read that a "dermoid" another name for it is teratoma? And that it could possibly be malignant, or become malignant. I also found that besides it running in my family, that endometriosis increases my risk of three different subtypes of ovarian cancers. That scares me. I am trying to raise money to see an endo specialist who will excise my endo tissue, but it will be a while and I almost want whatever this left adnexal mass, dermoid whatever it is removed asap:( I hate worrying and talking to you helps

[HVAC]

     There are a lot of questions and that is scary. Like anything else it takes practice dealing with medical. Doctors even speak a language we do not know. They do not mean to mysterious often they just do not know. I worked over 20 years for Veterinarians. Of course you are dealing with patients you can't understand. The body is very complicated. Many times illnesses just resolve themselves.

      I also worked on heating and air conditioning units. It amazes me that something non mechanical works so well as the human body. The trouble shooting and diagnosing are the same process. You find out what works and keep eliminating until you find what does not work. Sometimes you have several things which do not work that are not related. It takes a long time to troubleshoot of diagnose.You want someone who has seen a lot to trouble shoot.

     I would guess that most people have some swollen lymph nodes some where at any given time. It is like the more testing they do the more antecdotal ( things that are not important or related to what they are searching for). findings they will find. Every time they image my kidney they see a cyst on my left kidney and two Ureters on the left kidney. Neither is important they are just there.

Alex

[JessieJ21]

And she agrees from my reports the left adnexal mass has been there for 3 Years so its not just a functional cyst. I think she suspects it to be a dermoid that's what she accidentally called it out loud.. so first it was a "follicular cyst" then possibly a " hemorrhagic cyst", now possibly a "dermoid cyst" I don't think anyone really has any idea and these are "guesses" I am so glad she is making sure now. The swollen lymphnodes still scare me though all of them can't possibly be caused by endo:/

[JessieJ21]

Thank you, yes I feel light headed and dizzy like I am about to fall over sometimes when I stand up I didn't know it was related to low blood pressure I just assumed I stood up too fast, but I will have it checked out want to make sure my heart is okay with the low b.p. and i also have chest pains and lower rib pain sometimes hope that's not related to a heart problem. Heart disease runs in my family..I wish she could be my primary care too but i think she is just a gyn:( but I will find out for sure. Thanks:)

[HVAC]

I am so glad. Sounds like a good plan. Some GYN do primary care. If you found a doctor who cares that is good. Low blood pressure can be natural or because of medications. I have naturally low blood pressure. Medications make it lower. If you had low blood pressure if you get up and move to fast sometimes you feel light headed. One doctor had me drink bullion cubes in hot water to raise it. Usually they do not do anything.

Alex

[JessieJ21]

My new gyn is very nice& caring.. I told her about everything.. and she wants to do a laparoscopy so she can see exactly what's going on in there. She said she thinks I have endometriosis. Also do you know what low blood pressure means? Also she had me apply for health pay A at the center for family health so I can see all their doctors about all my problems for a $20 dollar copay.. since my Doctor won't see me. I am so happy I found someone who cares:)

[HVAC]

I am sorry you are having so much trouble.

Alex

[JessieJ21]

I wouldn't be as worried if the one above my left collar bone didn't seem too grow and i found one on thr right side of my neck like the two on the left side just below my ear and there are three solid swollen ones on each side of my pelvis/groin and the top two are getting bigger and harder, I also feel one above each knee and on each side of my lower spine(tailbone) that just more recently showed up or I just now noticed.. Also wonder if i have them in my chest that i just can't feel. the left supraclavicular node is the largest like a kidney bean but hard and don't move or hurt the others are hard and i haven't noticed them move either only my finger will just slide over them but they feel like hard peas and the two top ones on each side of groin are a little bigger than a pea and they are very hard like the big one on collarbone and also are not mobile. I don't what the E.R. would do for my lymph nodes but maybe blame it on some infection i have already been checked for and as for the chest pain and rib pain they probably won't scan because of my insurance they will try and get me in and out the last time i was there in Jan on the 18th i complained of center chest pain they said they were going to do eeg or whichever and never hooked it up.

[JessieJ21]

My primary care seems to only care when I can pay or have insurance he takes:( No one has checked out my lymph nodes at all

[HVAC]

It took over 40 years to be diagnosed with MS and over 6 for Cancer. I stopped working Veterinary in 2003. I am over the time limit.

I do not work. I am in treatment every Thursday and sick the rest of the time or unable to drive with medication.

They can tell with out a biopsy what is normal lymph node and what is Cancer usually. They thought I had a lump in my breast and it was normal lymph node they did not have to do a biopsy.

What is the real risk of Lymphoma? Like they say I have a 87% of Breast Cancer because of BRCA. Since the entire population has not been tested for BRCA it does not really mean 87% it is only 87%  of people tested for BRCA which is a smaller population. Statistics can be misleading. I read a lot of Medical studies in they all say I am dead statistically because of the clear cell. I am not dead so I have learned not to trust medical literature. Or to read it with a liberal sense.

I have a rarer form of MS which says I will be very crippled and that is not the case either.

The human body is very resilient. It is also very complicated. The more imaging and blood work you have done the more they find. A lot of what they find means nothing to your over all health. Everything has to be taken in context.

Since I was diagnosed with MS my life really has not changed. The doctors now have a name for the weird symptoms I have. They do not treat me differently. I see my Neurologist once a year. He does an exam finds things are the same and I go on my way.

My Cancer is considered a chronic illness like diabetes or MS. I will always treat it. It is not so bad.

I have swollen lymph nodes some are because of the Cancer. Some are simply my sinuses. I have lumps under my arm pits from sinus.

I am sorry you have to use the ER, because they lousy at diagnosis. A Primary Care who sees you consistently is the best for noticing changes and knowing what is normal for you.

You do have real stuff going on. Getting it diagnosed and symptom management is the problem.

Alex

[JessieJ21]

Oh I was doing research and came across that my seizure medication Dilantin/phenytion increases risk of Lymphoma which I have all the symptoms of, I wish they would just biopsy my swollen lymphnodes to be sure because they did a biopsy when i had my colonoscopy "just to be safe" i think, so why they aren't trying to be "safe" about my lymphnodes is just crazy to me.

[JessieJ21]

Wow, that is messed up how do they expect people to afford that. Yeah I've been denied disability and DHS wants me to apply again and I know Ill probably be denied again. I know they probably won't give me straight medicaid and I don't know what to do if they don't, just have to keep going to the E.R. and being misdiagnosed.. This is stressing me out. I feel bad for all the people with problems that can't get help:( So, why won't they give you disability that is crazy!! Do you work then?

[HVAC]

It is a shame all Americans are not able to have the same medical care. My insurance and health care costs are high but I am so glad I have Insurance and can get the care I want. I could not even get into a Clinical Trial without insurance because you have to pay to be in a clinical trial. There is the Chemo and CT Scans every eight weeks. One month is over $100,000 for my treatment. I have to pay at $10,000 a year after my premiums. I have been turned down for disability and Medicare. Health care is just very expensive.

I know I can't do much but answer some questions and care.

Alex

[JessieJ21]

I am very happy you are doing well for the most part. I know the feeling of hands not working I have problems gripping things like bottles, opening them, turning door knobs, unlocking doors, brushing my hair, doing dishes, cooking with cooking utensils, and writing very much. It hurts:( I think its my osteoarthritis though.. i don't know. So i was happy yesterday because i was accepted for medical insurance only to be upset today when i find out its only plan first which covers birth control and that kind of stuff so my neurologist won't see me still.. and my doctors office doesnt take it either, so she said she could make a note and see if the doc wants to see me regarding my new symptoms or I can just go to the emergency room, I am so sick of no one helping me!! Thank you for talking to me and being there for me, I'm very appreciative because no one else cares about me

[HVAC]

I am okay. I am on my 13th chemo but its going well. I am getting more energy as the weather gets nicer. I am really doing great for MS and Cancer. Most people are amazed I have either. It is just a day to day thing. This week end my hand did not work and I dropped stuff including water in the middle of the night, a big mess. All and all life is good.

Alex

[JessieJ21]

Wow that's a lot of money, I couldn't even afford $200 to see my new neurologist now I have to reschedule when I have insurance:( well I will see what my gyno says when I meet her. Thank you, How are you doing?

[HVAC]

It is a genetic test. It is $4000 so insurance does not like to pay for it.They will if you are at high risk. Your GYN would know about it. If you have BRCA 1 or 2 you have decisions to make. They say with BRCA 1 I have a 40% of Ovarian Cancer and a 87% of Breast Cancer. I am also at a higher rate for colorectal cancer. So I have to be monitored for all these cancers. Those statistics are a bit misleading. They pushed for me to have both breasts removed to keep from getting Breast Cancer. If I did not have Ovarian Cancer they would want me to have hysterctomy, etc. Angelina Joeulie has BRCA  1 and she chose Mastectomy.

Some people do not want to be BRCA tested because they do not want the extra worry. They tested me after I had cancer because BRCA 1 responds to chemo better than the general public. I had an Ovarian cancer which normally is resistant to chemo. I am on my 13th round of chemo.

Alex

Melanoma and Leukemia are probably tied to BRCA 1 if a brother or father had prostate cancer in their 50's then that could be BRCA.

[JessieJ21]

My Grandpa on my moms side died of Leukemia in his 50's and my Grandma on my Dads side had Breast/Ovarian Cancer, and I know of a cousin who had melanoma, My great aunt on my moms side just had a tumor taken from her colon ( I'm not sure yet if its Cancer) How Do they tell if I'm psitive for BRCA1?

[HVAC]

I bled for two years straight. Maybe two days off in between. I even had an endometrial ablation and still bled for over a year. Then I stopped bleeding and started throwing up( I had to carry a pan with me) , losing weight, and having diaphragm spasms. This went on for two years. I even ended up in the ER for vomiting and pain. I am BRCA1 positive so my body make Cancer tumors. My grand mother, aunt, father, cousin, and brother might all have been BRCA 1 positive because We all have severe cancer.

I had ultra sounds until 2009 and a CT in 2009 but the Cancer did not show up until 2012 on a ultra sound.

Both my Ovaries were huge and Cancerous which is unusual (it is usually only cancer in one ovary) The Cancer had spread to my bowels, liver, spleen, diaphragm, and lymph system. My weight loss and throwing up was because food could not get through so it had to come back up.

I have a rare kind of Cancer called clear Cell. It is fast growing. I am doing fine with treatment.

I took a picture of my belly and sent it to my Primary Care that is when she did the Ultra sound.

Alex