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Age 30 about to have surgery and many many questions needing some advice...

phoenix23
Posts: 19
Joined: May 2012

Hello,

I've posted previously, but for those that aren't familiar, I shall post a very quick summary. I'm 30 years old, very very strong family history of both Breast and Ovarian Cancer (and Peritoneal we think..), hormonal fed type. Great grandmother, her sister, my grandmother, my mother and now my sister... all diagnosed in their 30s or early 40s, and sadly none have made it though my sister is currently fighting!

Trying to be proactive as I'm constantly told to be about 'early symptoms' I've finally gone in to get myself check out for the following... severe fatigue, night sweats, hot flashes, weight gain and weight loss that range from 30 lbs lost in 5 weeks to gaining it back in another, seemingly in about 6 month cycles for the last year mainly. Severe pain with intercourse, constant dull ache pain in right ovary, constipation, diarrhea, bloating, itching skin, trouble sleeping, enlarged lymph nodes in my right groin, right collarbone area and left cervical node in neck. Had episodes in early October last year as well as early February this year, where I felt a lot of heaviness and pressure in my lower pelvis, followed by a couple of weeks of slight incontinence, and then horrific pain, which resulted in excessive bleeding, high fevers for about 4 days, chills, vomiting, then diarrhea. (I now know this was my right Complex Mass rupturing after getting large)

Had trans-vaginal ultrasound in May, discovered Complex Ovarian Cyst. Sent off to Gyn-Oncologist who has scheduled surgery for July. In the meantime, he sent me off to various specialists to see what else was going on in my body.

So far discovered in MRI, a brain tumor, wrapped around my carotid arteries and growing into my Pituitary Gland. They do not believe its malignant. The current approach is, they will wait and see how it grows and remove once it becomes 'imminent danger' ( to this I say, WHAT THE HELL!?!?!? Why are we waiting until it nearly kills me to take it out) but they say the surgery to remove it is dangerous and for now, its not killing me. My last hormonal test said everything was within range. The previous one, stated things were all over the place. The Oncologist believes the hormones are fluxing in cycles with growth patterns of the tumor...orders a Thyroid ultrasound for good measure. Comes up with another tumor, this one peanut size. Again, Endocrinologist says, its not omitting off the chart hormone levels so lets watch it.

The ultrasound of my Cervical Node in my neck, reveals its really rather large, especially in comparison with the others, a bit murky in the middle but nothing that immediately stands out to them as 'cancer.' So again, they've decided to watch and wait to see how it grows... Sent me on to get Abdominal Ultrasound to check my liver as I've had shortness of breath, especially on the right side of my lower ribs, feeling near constant pressure, specially when breathing deeply or lying down...makes me cough sometimes. That Ultrasound revealed several cysts on my Liver and also a rather large one inside my kidney. I was told, that from the Ultrasound, they are going to again, 'wait and watch as nothing is jumping out at them immediately for cancer.'

Okay, so they did another Ultrasound for Ovary again, to check on the mass after I told them I had another 'rupture' experience and sure enough, they said it was 'resolving on its own.' I told them that it would be back, it keeps coming back. I've felt this damn thing now constantly growing, and then bursting for awhile. Surgeon was unsure how to proceed. He definitely thinks something is going on and wants to 'get in there and take a look' but he wants to be sure... so he then sent me on to Genetic Counselor, who took my blood for Genetic Testing which still isn't back. Meanwhile, she examines me thoroughly and when pressing on my right ovary, again nearly lifts me right off the table with pain. Told her that it feels like being shot when she does that. Most of the time, its this dull ache I've gotten used to, pain shooting on occasion down my leg or 'feeling like being stabbed through with a burning hot poker...slow burn feeling.' But when she pushes on it, it hurts like HELL! This is NOT ovulation pain as its no where near my ovulation time, in fact the opposite, I'm supposed to get my period soon and no matter what day of the month it is, that ovary HURTS.

So now here we are, run down... watching and waiting on brain tumor, thyroid tumor, liver and kidney cysts and maybe maybe not surgery on Ovarian Mass recurrence. They check my CA125, and it said within normal range of 12.5 but my Oncologist said he doesn't put much stock on that, as I'm so young. But he wanted it as a base for my own measuring 'moving forward.' He still wants to do surgery in July to 'get a good look at what's going on in there and biopsy my ovary.' But he said he may just take the whole thing if he can't extract cystic components. I want to have children so I don't want him cutting out parts just yet if not completely SURE.

I guess I'm scared and lost a bit... not knowing what to do. I have one doctor looking at me like I'm just a hypochondriac because nothing is coming back screaming 'CANCER' without a doubt, and another that is dismissive because the bloodwork he's looking at, are within normal ranges, and another that says he realizes something is going on and not right, but doesn't really know how to proceed exactly... It cannot be NORMAL to have a Brain Tumor, Tumor on Thyroid, Cysts on Kidneys and Liver and Ovaries and the occasional wonky bloodwork without something wrong (that's without taking my testimony of feeling crappy and that something is not right)... I'm trying so hard to be proactive about my health and really dont' want to wait and take the 'wait and see' approach until its so dang glaringly obvious its cancer! i think that's crazy! easier on doctors but what's the point of being proactive and 'early detection' if you detect somethings not right and they want to wait and watch...????

I have advice coming in from various medical sources, saying I need to have Brain Tumor out immediately for many reasons, but especially because it could be causing all other tumors on those glands and because if it hasn't already, may in fact, be the catalyst messing with my hormones that sets off the cancer! Other saying, go ahead and do the pelvic exploratory surgery to find out what is going on and others saying, just wait and watch. Press for surgery both pelvic and brain? Or wait and watch it as suggested...

Please please, weigh in on what you would do...what you think. Thank you!

Phoenix

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Phoenix,
I'm sorry you are going through so much. I can't even begin to give you advice on whether or not to have these surgeries. I don't have the medical knowledge to give advice about those. I can tell you, however, that your body appears to be functioning poorly and this is what is contributing to your medical issues. I have had such success working with a good naturopath to get get my body functioning properly and reducing my cancer risk, that I would suggest this avenue as a possibility for you. It would not surpise me one bit that if you got your hormones and other imbalances rectified, if these issues would clear up on their own. Also, with our family history, following a cancer prevention diet and lifestyle would be of great benefit to you.

phoenix23
Posts: 19
Joined: May 2012

Tethys41,

Thank you so much for the response! You have great advice and something that I am already following, a Cancer Prevention Diet and way of life. I eat well (according to the latest most up to date research on cancer fighting foods and health), exercise, get enough sleep, rarely drink alcohol, never smoked, etc and still, I am developing these issues. That is why I 'know' something is not right, whatever it is. I have a family member who is a Naturopath, as well as a good girl friend from college days that has been of great help, and still I can't seem to get beyond this 'stuff.'

So frustrated. I feel like I'm doing everything I can, right...but its not enough and it won't work to prevent it, or catch it early enough if I do end up with the diagnosis. I try to go on living as normally as possible, but that's pretty difficult to do when there are constant reminders something is wrong in your body.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I can feel the panic and frustration in your post. Your surgery in July will probably offer up some answers, but it's so very hard to wait. I wanted to tell you that I had thyroid cancer many years before the OVCA. It was maligant, but self contained and I never had to have chemo, etc. I can't begin to advise you on your next move and only tell you that we're here for you. You're asking what I would do in your situation... I think I would have the surgery that you have scheduled for July and move forward with the knowledge that get from those results.
((((HUGS)))) Maria

phoenix23
Posts: 19
Joined: May 2012

Thank you for your reply Maria! I am leaning towards just having the surgery and see what becomes of it, the pelvic one that is. My friend that is a nurse says I should request they just do it all at once. Remove the Brain Tumor, Thyroid Tumor, drain the cyst in my Kidney, biopsy both liver and ovary and be done with it! I don't think I can convince them to do that, all in one go!

May I ask what were your symptoms associated with the Thyroid Tumor? And is it a common link, to have either a Thyroid Cancer or Pituitary Cancer along with Ovarian? I know they are making connections with Breast Cancer to those, so it only seems plausible that would go for Ovarian as well...messed up hormones.

You are correct. I am panicked and frustrated all in one. Not to mention EMOTIONAL! Damn those P&G Commercials for the Olympics about athletes and their moms!!! They have me bawling every time I see them! Ha! At least something to snicker about...

lovesanimals's picture
lovesanimals
Posts: 1239
Joined: Sep 2011

I'm so sorry that you're going through this. Sending you good thoughts and prayers as you ponder your choices and make your decisions.

Hugs,
Kelly

kayandok
Posts: 1223
Joined: Jun 2008

you certainly have a plate full of confusing information, and symptoms that seem suspicious. I can see why you are scared and run down. I can't give you any advice, unfortunately. Your persistent personality and ability to gather information will definitely pay off. You are your own best advocate, so go for it!

Meanwhile, know we are here for you anytime.

Hugs and prayers,
kathleen

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