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]

Have they ever done a CA 125 blood test for Ovarian?

Alex

[JessieJ21]

No they haven't.

[HVAC]

I would ask for that from your GYN. It can't hurt it is the Ovarian cancer marker. They usually do not do it because of false positives but you have enough symptoms.

Alex

[JessieJ21]

I will call my Gyn tomorrow and talk with her about it, she doesn't know all my symptoms but my Doctor does and I should have my biopsy results tomorrow from my colonoscopy I don't know what he thinks is wrong but he sent me to a gastroenterologist, and wants me to see a neurologist for the other symptoms I guess, although I had to cancel the neurologist appointment until I can get some insurance. They still haven't done anything about my swollen lymph nodes but they checked me for infections and i have none so they say they don't know why they are swollen that's why they are sending me to a specialist but i don't know which specialist i talk to about that.. I don't understand why they aren't worried about still watching my left adnexal mass I'm pretty sure its not been "going away on its own" like they say it should but i also don't understand why they can't say whether its from the ovary or the tube before they were saying it was on the ovary I've also this past week been experiencing the same pain on my right side it hurts during sex the most. I guess all my bowel problems could be related to my ovary problems and they just aren't putting two and two together, so when my results back hopefully tomorrow and if its not something like colon cancer or ulcerative colitis or something like that, I will call my gyn as well as my primary care doctor and explain to them I need to know if the symptoms are being caused by whatever has been going on with my reproductive organs and request the ca 125 and possibly an exploratory surgery because I am also curious as to why I have been trying over years and have not been able to have kids, my twin sister is lucky enough to have 3 already and she's done now, and I was hoping we would have kids that grow up together:(

[HVAC]

You have a lot on your plate. The problem with our medical system is doctors are so specialized and you have to get to the right one. I have MS and Cancer. They missed the cancer blaming it on MS. I think I had the Cancer for six years before they finally found it. I was throwing up for two. I went to a gastro. He did no tests so he missed it. By then it was blocking my bowels. Keep pushing until you get an answer.

Alex

[JessieJ21]

Wow I am sorry to hear that! 6 Years is a long time of suffering and not knowing why:( So if you don't mind me asking what were your symptoms of ovarian cancer? They must be similar to those of MS I have a lot of symptoms similar to ms as well I believe they checked my blood for that. So did they misdiagnose your tumor at first for ovarian cyst or left adnexal mass? They began saying mine was on the left ovary however after a ct scan she said they can't tell if its on the ovary anymore or if its on the tube, if its not on the ovary it wouldn't be an ovarian cyst still would it? I guess that's why they say left adnexal mass because they aren't positive!:( Well I need them to be positive because i guess it very well could be a small tumor
It would explain almost all my symptoms.. Although so could a lot of things. So how would they know for sure is that blood test or could that not prove it either,for sure or them going in by laproscopy or something?

[JessieJ21]

I'm scared it is Cancer just not sure where I'm pretty sure its not in my colon like they are checking by biopsy because I think they would have called by now if it was colon cancer. Can swollen lymphnodes not caused by infection be caused by something else besides cancer?

[JessieJ21]

I really wish they would approve me for insurance I've been fighting on and off for three years to get health insurance. I find a lot of Doctors won't see me with out it..Which makes it hard to get the tests I need:(

[JessieJ21]

All my symptoms if i didn't list them are.. Myalgia, low back pain, bone pain, hips,lower spine, neck, chest pain in the center occasional, problems with swallowing, persistant cough, throat doesn't even hurt, headaches with blurred or double vision, trouble with memory and concentration , abdomen pain and sometimes bloating, gas, diarrhea alternating with constipation , horrible pain before and during bowel movements in lower abdomen and pelvic, night sweats (sometimes drenched, soaking blankets), sweating bad from mostly just arm pit all day even when I'm cold and having shivers, numbness occasional in my arms hands fingers feet and toes, muscle twitching or spasms all over randomly, restless leg syndrome worse at night, unusual weakness/fatigue, vivid & emotional dreams and nightmares , weird whirring type sound in my head loud pulse or something when laying down and during bowel movements, occasional dizziness like i am standing up to fast, occasionally i feel randomly i am falling asleep during the day but when i come to after no more than a minute my eyes had been open the whole time?(i have epilepsy but I'm not sure i am seizing) loss of appetite and weightloss, I am down to 100 pds two years ago i remember being a healthy 160 went from size 13 jeans to a 00 with no dieting or changes in what I ate, until recently having a little appetite, nausea with and with out vomiting , pelvic pain, excruciating period pain, spotting/changes in periods, frequent infections, feel most day just ill with out a cold or anything, swollen lymphnodes i noticed my groins both sides first then in neck and above left collar bone, just this week began having pain in my left shoulder blade and under both ribs mostly the right with feels like a hard bump like bone but its sticking out and not sticking out on the other rib? Oh sometimes i feel my head barely rocking and sometimes my upper body but i am not controlling it.

[JessieJ21]

Almost forgot cold feet and hands all the time, and extreme sensetivity to light especially the sun

[JessieJ21]

So just like i thought it would my biopsy came back fine. So I called to make an appointment with my gyn and apparently she no longer works there that's the second one i lost the first one i had retired so now i have an appointment next wens. with a new gyn hopefully she will be able to do more for me than the last two.

[HVAC]

I am sorry you are having so many issues. Do you have a good Primary Care? I do and she is great. I go to her first. She found my MS and my Cancer. She has her own practice.

Alex

[JessieJ21]

How did she find your cancer? I have a primary care he used to be a lot better when i had insurance when I go in i end up seeing someone else lately i don't know why also one time back in April of last year one of his nurses said he wouldn't see me anymore because prior to that it had been over a year but i think it was really the fact i had no insurance i am surprised they actually saw me in his office this year. I don't want to have to switch doctors because he knows my history but i may have to if he don't start taking time for me. I can't wait until I have insurance so i can rescheduled with the neurologist. A neurologist i used to see diagnosed me with epilepsy at around 16 then had my primary care refer me to a knee specialist also because of knee pain he ordered an mri and at 18 i was diagnosed with osteoarthritis I don't know if it spreads or what but most of my bones and joints hurt, crack, pop, and my knees give out on me at times.

[JessieJ21]

I found four pin head sized red like blood dot on on my left breast, two on my left arm and one on my left leg the one on my breast is a tad bigger and darker red than the others and this one bumps out a little. I have no idea what they are so i tried looking it up they look similar to petechiae or cherry anginomas but I'm not sure have you ever experienced these, should i bring it up to my doctor the one on my breast has been there for a while not sure exactly how long and then i noticed one towards the inside of my arm at least a month ago then now today noticed the other one on my arm and one on my leg

[JessieJ21]

Im starting to wonder if it is petechiae from Phlebitis because i do get pain in what feels like the vein running down the front of my left leg but it normally hurts when I'm in the cold so i assumed nothing of it, also wondering if the swelling above my left collarbone is actually inflammation of a vein rather than a swollen lymphnode. I read phlebitis can result in people with .lupus or ovarian or breast cancers

[JessieJ21]

Doing research it seems more like petechiae & phlebitis. Can i just bring this up to my gyn next Wednesday or should I call and inform my primary care doctor first?

[JessieJ21]

Anyone that would like to talk, I would Love that. I don't have many people to turn to. I know my family cared but its not easy to talk to them when I know something has to be wrong and they don't want to face it, or really talk about it and my problems til we know for sure I feel, I need someone.though

[HVAC]

Petechiae sounds right. What is causing it I can't say. My Primary Care found my Ovarian Cancer with a Transvaginal ultrasound. I had weight loss and vomiting over several years. I got to the point I could not eat at all. I said I did not know what was wrong but something serious was wrong. It was pretty obvious I had Cancer. Both Ovaries were Cancerous and my bowels were blocked. They had me to a an Oncologist the next day and in surgery with in days. I was in bad shape.


If I had it to do over I would have gotten a second opinion. I would have gone with a different doctor and hospital. I was scared and went with the first doctor. I luckily switched hospitals in time. I did not need to get as sick.

Alex
Alex

[JessieJ21]

Yeah I really don't like the hospital in my town, & I've had a transvaginal ultrasound many times when they first started doing them the said oh just a cyst on your left ovary then all of a sudden they started calling it a left adnexal mass and even with ct scan they say left adnexal mass because its in that region but they can't tell where exactly and they say "possible" hemorrhagic cyst and free pelvic fluid can't some tumors bleed too? I don't know why they don't try and look at it another way to confirm because I read that left adnexal mass should be followed up on to make sure they aren't malignant why they haven't by now is beyond belief. Well hopefully when I inform my gyno of my other symptoms she will want to make sure it isn't cancer, And if it is I hope they figure it out before it spreads, I'm irritated with my primary doctor because I gave him my list of symptoms and so he wanted me to see a neurologist and gastroenterologist but when the biopsy come back normal its obvious there is still an underlying cause of the frequent constipation alternating with diarrhea, and for my other symptoms and I would think he would contact me for futher examination to know the cause but nope now I have to take it upon my self to figure out the right specialist to see. Did you have very painful menstration, pain during intercourse, or irregular periods & irregular bleeding? I have only thrown up once or twice a month for maybe 3-4 months but nausea is a daily thing for me mostly just after I wake up til around 5 pm most days which makes it hard for me to eat anything til it goes away if i tried to eat with nausea I would probably throw up

[JessieJ21]

But the weight loss started before the nausea and loss of appetite.

[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

[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]

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]

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?