Lot’s of C/MM in family / No C in my history but worried about spine growths - Plz help!

Hello. I can't ask anyone in my family because MM (or a form that is more rare and very similar apparently - that some researchers at Indiana University wanted to study before VA discarded everything IU requested as my father was literally dying, which I cannot even get into because it makes me so sick) —but some were dx'd with MM & some had mysterious cancers they never could figure out, so they dx'd by where they believed it to have metastasized. These are the cancer deaths, everyone was taken in similar fashion as far as time of discovery -> death: <P>

My father (in 60s), first cousin (30s), aunt (3, but they thought back then it was related more to lymphocytes than plasma cells), great uncle (40s), and grandmother (40s). <P>

A tiny bit of odd history for me: never had any allergies in life but Benedryl & Penicillans, but 4 years ago I got very sick and my immune system went haywire. I saw my first ENT, developed mutiple blood-tested food allergies bizarrely to things like wheat, gluten, egg, cow dairy, soy, etc., ended up needing sinus surgery, needed immunotherepy (but quit going soon after starting) my fever developed (which hasn't left yet, and no one can figure out), and life was hell. I eventually ended up feeling bit better, but a couple years later, I felt the same kind of sick in different circumstances. 3 years after my initial development of first string of allergies, last year, my immunologist ended up re-testing me (both skin prick and needle injection ways) - and 100% of my food allergies completely disappeared, no IgE, no IgG, IgA, - NONE!!? <P>

Instead, I had developed massive environmental allergies, so badly I started immunotherapy for that... No one understood why: not my allergist, immunologist, and my ENT was convinced my mast cells and histamine were at play (as I have a Narcolepsy dx and research has recently been considering histamine a potential variable in N), anyway, I was just happy I could eat everything again. <P>

Feeling sicker and sicker, my doctors and variety of specialists (because I have a lot of weird dx's) did so many tests. But, it never dawned on me to look into what MM even was until some concerning incidents that started last November— in fact, I had told my doctors about C in my dads family, but ignorantly enough, never said anything beyond "C", I always thought it dealt with red blood cells, and my dads sister who died at 3 was the oddball because she had white. In Nov I was inspired to research what the cancer was and symptoms of it to make sure my docs were testing for it (it wasnt, they didnt do anything beyond major biomarkers for common cancers), but I ended up with too much on my health plate to look into it further at the time. (It's obviously on my list) — anyway when I realized what MM was, naturally I was like noooooo st....?? <P>

The other "health plate" crap I have was the discovery of some masses involving my spinal chord, and then other things, and then a separate new 4" growth that grew in a few months, on the other side of my spinal masses, with now surgery scheduled in 12 days to remove that and so I figured I'd give my first health forum a shot. <P>

Initially, I had only posted this in the Ovarian Cyst group, but after posting I got the wild idea to see if anyone in this community experienced anything similar at some point, because this is the first time I apparently am warranted to be a little concerned about C, healthily concerned anyway. I figured I'd just copy & paste what I put there because it involves my mysterious health road I've been on since November, & because it involves masses up in the area where some cancers are believed to metastasize. I thank anyone's time in reading this and/or responding, sometimes we have to be our biggest advocate. <P> <hr>

Ovarian cysts are new to me, as until 2 days ago I've had none (that I knew of), and no problematic issues with my ovaries in general. <P>

I've had back pain since a child from scoliosis, but in '06, due to trauma, injured my right side sacral region (lowest part) of spine. A golfball-sized mass & visual protrusion developed soon after (however never appearing or feeling to enlarge). I suffered from even more back pain than normal, but didn't have insurance at the time. I have many health complications & see many specialists so when I got insurance back, I kept forgetting to mention my back/top buttox mass. Some months ago, I finally did and my PC referred me to a back/tumor surgeon. <P>

Ironically enough, (13 weeks ago) before my 1st appt at the surgery center, I lost all feeling in my right leg from hip to knee. Days later it came back, but so did what felt like enlarged lymph nodes in my right thigh. Those went away after a week but I continued to have several different nerve issues with my leg, EXTREME pain, swelling and bruising that would come & go, and general feeling of malaise. Fighting w/ insurance to get an MRI or CT, I was denied & forced to get instead a (quite lengthy & detailed) ultrasound. Those results showed two distinct masses. Although smaller in size, the ultrasound was able to detect both necrosis and calcification- which the radiologist noted he believed specifically to be Heterotopic Ossification (the abnormal growth of bone in soft tissues and muscle following trauma). <P>

Due to the nature of sonography - they were unable to see the depth and spread of the hardening and spreading situation around these masses. No masses were seen on my right thigh ultrasound, but they did detect the blood was moving rather slow in my right leg. My back surgeon said this all could absolutely cause the debilitating pain I had been experiencing, which at that point, was some days keeping me bed ridden with heating pads it would get so bad. I was unable to work many days when I needed to (I'm a single mother, so not working is especially not an option, but when you can't really walk at all, what is one supposed to do but be patient and do the best you can until you're approved for more testing?) <P>

Due to the level of complications surrounding my spinal chord, I was referred out to a neuro/spinal surgeon as well vascular surgeon for the blood flow. <P>

I have cervical dysplasia, so my OBGYN has me come in 4 times a year, rotating ultrasounds and colposcopies. My last check-up ultrasound was months ago, and showed zero abnormal growths in any reproductive areas. I had a colposcopy check-up in December, and told her I wanted a full STD check since those lymph nodes that enlarged at the beginning of the leg pain mess are lymph nodes associated with STD's. I also for an entire year, had infrequent 20-40 second-long bouts of stabbing pain in the area (which she was aware of), and at one point it was so bad I questioned if my appendix was bursting—but again, nothing unusual showed on any ultrasound, biopsy (other than my monitored dysolasia), or blood test. <P>

Although I wasn't due for my ultrasound check up for a couple months, my OB scheduled one for this past Tuesday when my STD screening came back negative - she figured since my surgeon was still working to get a CT or MRI approved, she would go in and see if she could see anything from her end of things as far as my recently discovered spinal-associated masses went. Bless her heart, she really was just trying to help me get any answers I could while suffering through the sy cracks of the American Health Care system. <P>

Instead however, an orange-grapefruit sized cyst was found in my right ovary, literally on the other side of these sacral region masses!? I'm more of a petite figure (5'3", 110ish lbs), so her assumptions were all the pain, the recent nerve things, the slow vascular flow and the coming and going of what felt like swollen lymph nodes or blood clots - she attributed it all to this cyst. She didn't discredit by any means pain associated with the 12 year long palpable neoplasm (which was growing, only inwards, calcifying things along its way) - but she did make clear the ovarian cyst was of absolute abnormal size, and that it needed to be removed soon since it was contorting, and because of the very real possibility of it cutting off blood supply to my right leg in the near future. She also attributed my recent month long bout of nausea & vomiting (which I thought was from high levels of pain) to the extreme amounts of hormones that large cysts can release. <P>

So she scheduled me a laparoscopy for the upcoming 22nd and explained how when she is removing the cyst, may end up taking the ovary, and possibly even both. I joked she could have them, I'm 35 & done baby-making, but the seriousness in her typically bubbly and playful personality caught me a big off guard. <P>

Since I've never had an ovarian cyst, I was having a hard time swallowing how something that just popped up out of no where could be causing all the recent 13-week complications that a 12 year long painful spinal chord injury directly adjacent to it has, which is when she explained how when ovaries flip upside down will cause severe lower back & muscle strain pain, affecting blood vessels and the same nerves that would cause the original temporary loss of sensation in my leg. <P>

I'm no doctor, but it does make sense for obvious reasons... however I just had already been mentally preparing myself for a rather intense surgery removing the abnormal growth of calcification around my freaking spinal chord - and suddenly a simple outpatient procedure is all I need? for THIS kind of pain?! <P>

She said I would get a call from her nurse soon explaining what to expect on all potential outcomes, on the parts that might have to go, and recovery times for all so I felt armed and ready. MILLIONS of women get cysts every year - of course she wont take my freaking ovary, or both, or more. <P>

I spent the rest of Tuesday not thinking about it & going on a first date with a guy I had been excited about (who I went on another successful one with yesterday in case you were curious!) <P>

...but when I woke up yesterday, and the reality hit more, I read a bit online, (not much - because as mentioned, I have the craziest most extensive list of seemingly unrelated dx's, a 4.5 year long fever no one can figure out, 14 specialists and now 5 surgeons- I know to not play Google Doc, because that's pointblank pointless.) I'd rather just wait with as much grace and patience as I can summon, & deal with what I need to when I get there, no sense in wasting energy (which took me YEARS to get to, btw, but I feel very proud and accomplished for finally being able to do so, hah!) <P>

...so yeah, then yesterday I was reading some info online- just about cysts in general, how they form, the procedure, etc., and took note my cyst seemed to have grown rather fast, and that 4+ish" diameter was not only rather large, but "gigantic" - according to the pathological terminology I crossed, but I shook off any worry. <P>

I am a traveling photographer and do lots of contract work for a company that sends me all over the US. I reached out to the girl who schedules my trips and gave her the timespan on days I was unable to shoot. Empathetic as she is, she asked me questions out of curiosity and because she wanted to make sure my health was okay. I told her about my little cyst situation, brushing it off as the no biggie it had felt like until her. <P>

Apparently her last job for 5 years was working with an Ovarian Cancer Non-Profit foundation, so she probed just a respectable amount, and I probably answered a bit more in depth than both she or I were expecting — but I've been a bit worried since my talk with her. Not because she scared me - but because I listened to her and "relapsed" by getting on Google and scaring myself just a bit. <P>

She did tell me that a "normal" cyst - doesn't:

a) typically get that big

b) grow that fast <P>

She basically left me feeling like my ovarian cyst situation was uncommon (comparatively speaking to the millions of cysts that come & go, most undetected every year). <P>

Mentioning the speed, size, abnormal growths directly on the other side of cyst/ovary wall - she wouldn't be surprised if I ended up with a hysterectomy, and that if I don't, I should consider one. <P>

I went to no concern in the entire world to a WTF when she said the 'h' word; my doc didn't mention 'h'.... but this lady dealt with women who only had abnormal ovarian situations where malignancies were found, so her response can also be considered biased, I convinced myself. <P>

Naturally though, she did get me thinking. <P>

Omg, what if these growths ARE the same thing. If the slowly engulfing mass behind my cyst (that I still need biopsied) are cellularly connected- that is by definition what cancer is, correct? Abnormal tissue that grows and moves into different tissue and muscle and causes complications? Or grows into the gland beside it? I mean, I've never dealt with masses and cysts before this, but they literally are NEXT TO EACH OTHER. <P>

So I closed out google and decided to join my first health forum. <P>

I please need to hear from other ladies who have been in a similar circumstance. I'm sure benign things like this happen all the time given the millions upon millions of ovarian cysts that occur every year, and the very low number of ovarian cancer respectively speaking. Please share your story because I really need to hear some motivating, inspiring things right now. <P>

I honestly don't think I have cancer, and I'm 12 days away from finding out regardless but it feels harder than normal for me to stay calm given the weight of my situation. <P>

<P> <hr>

With that being said: <P>

• How many of you have had "giant" or "gigantic" ovarian cysts? What action was taken? <P>

• How many have had an ovarian cyst that gave you complications where intervention was required? <P>

• How many had a cyst of significance grow in the course of a few weeks or months? <P>

• Have any of you had masses right beside your ovary that were purely coincidental and were all found to be of benign nature? <P>

• Has anyone with ovarian cancer had a similar situation happen? <P>

<P>

I'm just trying to be as realistic as possible at this point. 12 days feels like a long time, which I'm confident many of you know. <P>

If you made it this far, I appreciate your taking the time to read this, as well anyone who takes additional time to respond. <P>

Have a beautiful day & I wish you good health moving forward. <P> <hr> <hr>***

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