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Concerned I may be looking at cancer

Sugar Shell's picture
Sugar Shell
Posts: 1
Joined: Dec 2017

Hi ladies, 

I'm glad I found this board! With so many fears and concerns it's good to have outside ears and advice from others who've gone thru the same things. 

A quick guided tour of me... 

I have been dealing with crazy fatigue, low back and tailbone pain for 2 years. One dr diagnosed with fibro, another thinks I have possible tailbone issues. I've had an MRI, 3 ultrasounds, and xrays to try to figure out the back and tailbone pain. My MRI shows tarlov cysts in my spine which explains much of my back pain. Along with those I have also had left side flank pain since summer 2016. I have not had a cycle since June 2016. The pain in my left side has gotten to where initially I couldn't pinpoint it, but it felt like under the ribs. Now it is very distinct pelvic, low and just beside the pubic bone. I am 51, not over or underweight, and go annually for paps which are always fine. 

Last month (Nov 13) I had a period. Heavy and painful, and long - 8 days longs. My norm used to be 4- 5days. I have never had cramping or such heavy flow that I'd go thru a tampon every hour! Made an appt with dr and from that appt Nov 20th, have now also had a TVUS and an appt with a gynecologist who did an endo biopsy.  Hurt like stink!  Turns out the u/s showed a thickened wall of over 12 mm as well as a small cyst in my left ovary. Right ovary seems to have shrivelled away. So, doc says the biopsy results should come in 4 weeks, then seeing the scoul on my face says "I'll rush it for you, hopefully in 7 - 10 days". She also said that although it's not pleasant, she would be shocked if anything showed up and that PMB is not really a concern unless you've been post menopausal for a good 3 years? That it is normal for the ovary to jump start after a year or so - one more hoorah or kick at the can.  Today is day 7 post biopsy. Nothing yet. She (dr) advised me I may have cramping and slight bleeding from the u/s. So that was last tuesday. I had slight pink discharge that afternoon and some cramping and then nothing till wednesday night. Woke up to what I only could describe as a flood. This heavy flow continued all day so I called the Gyn office. Advised her nurse but never heard back from them. 

Today is one week from the biopsy. After 4 days of heavy flow I am finally where I would say I'm at what would be the tail end of a "normal" period. Some bleeding but not crazy, needing a liner but not much else. My left pelvic area is hurting ALL the time. If I could hold my hand against it under my pants and be an Al Bundy I would! Tongue Out! My back is also aching constantly now, whereas the TC pain is usually more upon sitting or standing too long. 

I am very concerned this is cancer. Thickened lining, cyst in ovary. 2 heavy cycles in under a month with 18 months of no cycles. Pain in pelvic area, limited appetite and fatigue like crazy (also mentioned to dr many times over course of 2 years). I also have swelling on my left lower leg more than my right. This may be nothing as I do have a desk job where I sit for 10 hours a day but as it's def more on my left leg than right I find it odd. 

My mom had a full hysterectomy at 24 for endometrial issues - she cannot recall if endometriosis or cancer, just she was in pain and bled too much. She wasn't really given an option. I have many family members with various cancers, but outside of my Mom nothing uterine or pelvic that I'm aware of. 

Am I just over  reacting? Is it normal to go back into cycles, and more painful longer ones? I keep checking my phone if I've missed a call from their offices. It's getting closer to Christmas and all I can think is cancer is going to be what I unwrap this year. My gut is so often right, both in my job in law enforcement, and in my marriage (which is another story altogther) that I'm finding it hard to not think the worst. 

Thanks for the listen, and sorry for the long post. I needed to tell someone what I'm dealing with. It's too hard to go this alone. 

 

Shelley 

CheeseQueen57's picture
CheeseQueen57
Posts: 935
Joined: Feb 2016

Hi Shelley

Sorry to welcome you here but this is a great group of supportive women. Be annoyingly persistent with your doctor, particularly try to get answers before they get into holiday mode which will be very soon. 

What you are experiencing may not be cancer but it’s not normal. You may want to request a D&C. Often an endometrial biopsy will not be conclusive ( and you’re right, it hurts like hell) because they often can’t get enough tissue and/or it’s too contaminated with blood if you’re bleeding a lot. So you end up waiting all that time for inconclusive evidence (that happened to me). A D&C would be more conclusive.  The result of your tramsvaginal ultrasound warrants further investigation.  At the first sign of cancer ( and I’m not saying you’ll ever get that) go immediately, do not pass go, to a gynecologist oncologist for any further treatment or testing.

Good luck And keep us posted. We’ll all be thinking about you.  

bluesmama
Posts: 124
Joined: Aug 2014

As Cheese mentioned, it's not normal but that doesn't necessarily mean you've got cancer. The biopsy should tell you more. I'm actually surprised the results would take 4 weeks. Mine came back in a few days. And as you've noticed, the waiting game is the worst. More often than not, the thickening is from a benign hyperplasia. They usually monitor you very carefully if you do have that because in a small number of cases, it can turn into cancer.

Of those with hyperplasia, some are "atypical" and "complex" and are at 22% risk of it turning into cancer. The recommendation is normally a hysterectomy for that scenario. You should try to track down your mother's records. And if at all possible, go on with your life until you get your results. I know that's easier said than done.

When you get your results, if falls into atypical and complex but not cancer, I'd still seek out a gyno/onc surgeon if you choose to go ahead with a hysterectomy. They're generally much more experienced and sometimes the final pathology report can include evidence of cancer. It happened to a friend and she felt much better about having it performed by someone experienced with cancer in the end. They ended up finding a tiny amount and didn't recommend further treatment. She also kept both her ovaries. 

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I have little to add except I agree with cheese . A d and c will give more answers and yes, waiting  often the worst part! Try to be vigilant about getting some answers which is easier said than done this tone of year . Reguardles let us know what happens. We are all here for you!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I am so sorry you are dealing with this...

what you are experiencing very much sounds like what I went through but during the waiting period my doctor told me it could be other things and not just cancer....so please hold on to hope.

My doctor ran 2 CA125 blood tests on me...they were very very high. That caused us to worry that there was more going on than just fibroids or menopause as my ultrasound just showed fibroids and my CT looked normal except for an enlarged uterus.

It's not foolproof but a CA125 blood test can be a useful screening tool and you get results in a day or so...again not foolproof but it is a way to maybe indicate if you need further testing. Perhaps you can call the gyno office and ask them if they could run a CA125 on you...

and like the ladies said a D&C also can give some better biopsy info...

and I would, just in case you need one, try and find a gynocological oncologist...better to be ready and not have to see one than be scrambling...

you will be in my prayers...let us know how you are doing...we are all here for you and hope you don't have to join us as cancer fighters but you are part of us one way or the other...

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