I may have cancer, and my insurance is killing me...

Back home, everything went smoothly. Can't even tell I was intubated.

The deep pain I had on the left side is gone. Even with the post-op pain, I can tell a difference. The post-op pain is nothing compared to what I went in with.

The right ovary was spared. It had a cyst, and that cyst had a cyst.

He removed the secondary cyst, and drained the primary cyst.

The left ovary was removed, along with the mass. He found a surprise, a cyst or growth on the left falopian tube. He told my husband this was worrisome to him for cancer, which in turn worries me. He has been very positive through all of this, confident chances were good this was not cancer, so this is the first time he has voiced this concern.

He did not do a frozen section, as they had first stated they would do. Not certain as to why, but there was a change in that. The pathology will take roughly a week.

He removed both falopian tubes, and did peritoneal washings, where they irrigate the abdominal cavity, and then suction off some fluid and send that to pathology, as well.

He also re-examined the uterus, and found a polyp, which was also removed and sent to pathology. I am sure he took futher uterine biopsies, as well, while he was in the neighborhood.

I feel amazing, considering I just underwent general anesthesia, and surgery. Everyone said they were amazed how quickly I came out of it, woke up, and was ready to go.

My pain level has dropped drastically. The groin pain, upper thigh pain, and hip pain is gone. I have only mild to moderate pain from the actual surgery, but again, it is like a beesting in comparison to what I went in with.

The bed, due to my back issues, made me miserable. I woke up almost immediately asking to be sat up. The bed making my back hurt was worse than the surgery pain.

I did tell them I had pain the first time I woke up. The nurse kept telling me I could not have anything for pain, it was too soon. I said something again, perhaps a bit louder, and more insistant.

A man, maybe my doctor, came up behind me, and said, "She takes a LOT of pain meds at home. Giver her something for pain. Now."

Minutes later, I was getting some more dilaudid, and feeling much better. That was the last pain med I needed.

Arrived home at 12:40, and was due for my regular pain meds at 12:30, so staying on schedule, I took them, but, honestly, I think I may be ready, already, to cut back on my meds.

Going to give myself a couple, three days, see how I am doing, and make sure it isn't just that my pain is under control. Now is NOT the time to experiment with changing or reducing my dosages!

I was due to change my duragesic patch last night at 7pm, so I went ahead and put on my post-op dose of .50 mcg. My pain doctor said it takes about 24 hours to get into your system, so it hasn't even gotten to my blood yet. These are also good for 3 days, as opposed to 2, for the other patches.

Something tells me, however, that I won't be needing all 10, for which I am grateful.

I will be extremely happy to be able to cut back on some of these meds, and even more happy to be able to walk without so much pain again!

All in all, surgery was so far, a great success! I am happy to report, thus far, good news, and again, to say thank you for all the support from everyone.

Now, I just await the pathology report, and remain hopeful that will be good news, as well.

I will report back as soon as I know, one way or the other!

I am so happy to hear that things went well and your pain has lessened. That is a relief. I will keep checking for updates. HUGS!!

reply to post by Libertygal


Glad your back home and feeling better after a successful op.

reply to post by Libertygal

hiya


I 've been thinking of you! So great to read your report and hear your own opinions. It sounds very promising and I will be following you. (I posted to you on my thread yesterday--but found you here).

Freedom from pain is a great phrase to hear!

reply to post by Night Star

Thanks, (hugs) will update when the doctor calls. My husband didn't know to ask, and the doctor didn't mention if he took lymph nodes or not. That is one question I am curious to ask.

Also, it looks like they do washings to stage cancer, so, I think he is maybe thinking more than he is letting on. Staging gyn cancer is pretty tricky, it has like 4 parts to it, and then sub categories.

en.m.wikipedia.org...

So, trying not to worry, playing the distraction game with myself again. Sigh. He must have felt a bit differently after going in than he did preop, because it doesn't seem they do washings just 'cause.

He also looked at my liver, and took pics of it, says I have fatty liver, and it is enlarged. Hepatomegally, though I already knew that. He said we would address that later.

woodwardjnr
reply to post by Libertygal

 

Glad your back home and feeling better after a successful op.

Thank you! I feel amazingly well! I can't believe how quickly and easily it all seemed to go!

reply to post by canadiansenior70

Hi!

Been meaning to get back to you preop, but life was terribly hectic the week leading up to it. I didn't have time for much besides work and preop the past few days.

Obviously, I still have back problems, but it is very clear all of this female stuff was making it worse. A bit more tender now, but still not bad, and nowhere near what I was going through days, and months leading up to this!

Hooe that you are well! I will check your thread.

reply to post by Libertygal


OH good idea to find out about the lymph nodes. I was shocked to find that they had removed 4 from me. For me it was just under the arm and I can no longer have any needles in that arm or blood pressure taken from that arm. If Ido I could get lymphodemia and there is no cure. I have seen two people with that. One it was her leg, one was normal size and the other was huge. For the other lady it was the arm, one normal size and the other huge! I now have a medic alert bracelet, as I do not want to get lymphodemia!!

reply to post by Night Star

Yes, I know how that goes. I already have left side lymphadenopathy. No needle sticks or B.P. left arm, just like you. Mine is due to my burns however. My lymphatic channels were damaged when I got burned as a baby, and it has affected me all my life.

I didn't know, though, until I was an adult, and got a simple herpes sore on my left thumb. I got red lines going up my arm, and they threw me in the hospital, thinking I had septicemia! (blood poisoning).

It took YEARS (4) for them to figure it out, a team of doctors from the CDC, and one finally cultured the blister and checked. It was herpes simplex.

Prior to that, doctors were checking for infection, fungus, flesh eating bacteria, everything! I was locked up in isolation, all my sheets and linens were destroyed, and I was fed on paper and plastic.

I even had one doctor tell me that it was all in my head, that I was making it up, doing it for attention. Some doctors just suck. In reality, he was just mad he couldn't diagnose it!

Anyway, it ended up being left side lymphadenopathy with acute ascending lymphangitis. Lol. A big mouthful.

I no longer get the blister on my left thumb, however. As herpes is wont to do, it migrated to another nerve, and now comes out on the left side of my head. Bit scarier place, because it is so close to the cranial nerves and the brain, so when I get severe headaches (I have migraines, sigh) I always keep in the back of my mind herpes encephalitis. It is something I have to be wary of, alert that could possibly happen.

One thing I do hope is, that from this thread, or other medical threads, that people must learn that their best medical advocate is themselves.

No one is watching over you, or cares about your general well being, that is your job. JOB.

Get to know your body, what is normal, and what is not, and if you don't feel you got sufficient answers, go see someone else.

Get to the bottom of things, until you feel well again. Never let someone brush you off. I have learned this the hard way.

Such as, when I had my surgery, the doctor took pictures of my liver, and told my husband, "She has fatty liver, and her liver is enlarged." As I said, I knew this. I went to a endo, who was going to quit soon. He did an exam, and says to me, "So you have hepatomegally, so what?!" Hepatomegally is an enlarged liver, and yes, it hurts.

His attitude made me feel like I was being a whiny baby. Well, since my surgery, and the doctor showing the pics to my husband, it IS a big deal. He was an ass.

But, you see, that's the trap we fall into. Doctor knows best. Well, I am here to tell you, and anyone else reading, they don't always.

They don't always know best, they don't always care, and they don't always have your best interest at heart. Advocate for yourself. Especially in this world, as it is today.

I very easily, or my doctor, could have said, "Well, insurance denied the precert, nothing else to do." But, he took a stand, and tried again. If he hadn't, I would have. I would have written a scathing letter to the insurance company, appealing the decision. I was prepared to do just this.

He may well have saved my life. He told my husband, in not so many words, that I have falopian tube cancer that likely has spread to my ovary. He did the peritoneal and abdominal washings to stage the cancer. I realize what he was doing, and why, and what he was trying to say, without saying it.

He could not come out and say it, until the path report comes back. However, he was looking at my abdomen, including my liver, for mets.

I know that's going to be the answer. I accept that. I just do not know the stage yet. Nor, did he. He couldn't diagnose it yet, because he himself didin't know, positively. He knew instictively, however.

He got caught off guard, which, I cannot blame him. Falopian tube cancer is VERY rare. In fact, very few women, worldwide, have been diagnosed with it. If I have ovarian cancer, it is a secondary tumor. He simply was not expecting this, going in. He thought it was going to be a standard ovarian cyst surgery, and again, I cannot blame him, he had no reason to suspect otherwise.

I just pray right now, that the washings come back clean. The prognosis is much better if they do. Median survival is only 3 or so years if the washings show cancer cells, even with treatment.

But, this too is a bridge that I shall cross when I come to it. My one saving grace may have been that I had a tubal ligation when I was young. From the images he took, it appears to be contained in the section of the tube at the ovary end, sparing my uterus. I may be very lucky, if this is the case. The only fear is, the open end of the tube, and ovary, being open to the abdomen, and the chance of cells free-floating into the abdomen.

Love and hugs. Thanks for reading, just had to get that out there.

Lg

You have already been through so much. You are a strong woman and will get through all this.

For any who may be curious, I thought I would share the pictures the doctor gave me.

if you are sensitive, or squeamish, don't scroll down to the images.

WARNING! Medical images below. For Educational Purposes!






















































The first pic is of my left ovary, the one that had a cyst, that had a cyst! He cut out the secondary cyst, and drained the primary cyst. Not sure if you can tell, but right in the center, you can see a little patch where he cut through the outter lining on the ovary to expose the cyst. This was a simple cyst. The little grayish area is where it used to be. Notice, to to right of this ovary, the band that is coming off of it, thats the right fallopian tube, which is no longer there. Note the size of it, and compare to a later picture.





This is the left ovary, the one that was removed. That end standing up, where it has a blackish, transparent appearance, that's the bad stuff. It was said to be fluid fulled, complex, with septations, which meant it should have been fluid, with hemorragic blood, (sometimes called a chocolate cyst) and multiple walls of varying thicknesses of division. Cancer is of higher risk in these types of cysts, especially if the septations, or walls, have a larger thickness, as opposed to thinner walls. The ultrasound report did not note the thickness or measurements of these walls.

Once removed, the doctor told my husband it had solids, as well, making it multi-fold more serious over what it already was. In essence, this is a classic appearance of what is likely a lower stage cancerous ovary. To the left is the normal appearing uterus, which has outward appearances of being healthy. That's a good sign.




This is the stunner! This shows the mass that in the ultrasound report was stated to be arising from or adjacent to the left ovary, but were unable to determine where it came from, and abutted the left ovary.

In reality, it is the left fallopian tube with a mass inside of it. It appears to be both solids and fluid, just judging by the texture.

This was the photo the doctor showed my husband when he stated that it is believed that most ovarian cancers begin as tubal cancers, and actually metastasize to the ovaries. So, if this turns out to be cancer, this is likely the primary tumor, and the ovary would be secondary. The right ovary appears to be clean, as of yet.

My one saving grace may have been having my tubes tied when I was young, thereby blocking the transition of the spread of the cells to the uterus, and possibly even the other tube.

If you figure the uterus is about the size of a small womans' fist, then, you can imagine that is about the same size as that fallopian mass.

No wonder it hurt! Not hard to imagine that was displacing things, putting pressure on nerves and blood vessels, and generally wreaking havok!

Also, remember when, in the first pic, I said to take note of the size of the tube for comparison. Not hard to imagine why that thing, stretched the way it was, was causing agony, in and of itself!

Hope you enjoyed your anatomy class! What's more, to actually see the monster inside that can destroy a life, even if it's non cancer!

Why didn't I heed the warning? LOL Yeah that stuff is kinda gross. Still wishing you all the best Hun.

reply to post by Libertygal

The images are gruesome, being that they are 'damaged', yet they wouldn't be if you didn't tell us.

How is the walking and the pain now?

Any follow up from the Dr. yet?

Pain is something else. It tells us when something is wrong. I have been in pain for almost 5 years re the two broken legs, so I attribute the pain to the broken legs (well broken proximal and distal femur, same bone) even though right now I have a stabbing one on my left lower abdomen. They all feel like nerve pain so I take the gabapentin, or in this case maybe just a laxative will do.

Odd when the femur breaks, just above the knee and causes pain from knee, all up the inner thigh, then jumps across and causes the very same pain in my right knee......................and my right knee has never been injured.

Keep up your Good Spirits

reply to post by Night Star

Lol, sorry. Being that I work in medicine, I suppose that I am somewhat desensitized to it. I am also more curious, I want to see what's eating me. Always been that way.

When I was little and getting all my skin grafts, I would go get my stitches removed, jump into the chair, and demand the hand held mirror. The doctor would giggle at me, hand it to me, and proceed to take out the stitches.

Had I been able to be awake for that surgery, it would have been even better. I would have wanted to watch! Pictures will have to do, however!

For those not used to it, it's gross, but for others, it can be educational, or interesting.

reply to post by canadiansenior70


All of the pain is gone. Vanished. I still walk funny, because I have been compensating for the pain by changing how I walked. I more... waddled, I guess. Now, when I get up to walk, I have to make a conscious effort to walk normally. Been doing this for so many years, that I might actually have to go to physical therapy to re-learn to walk again. This is somewhat frustrating, you would think walking would just naturally come back, but it isn't.

I guess that I had successfully retrained my brain and muscles all to walk funny. Now, I must retrain them to walk normally again. Since one cannot see themselves walking, that is why I said I may need physical therapy. I sure do not wish to cause myself more troubles by retraining and messing up something else!

Have heard nothing from the doctor. This has me concerned. I was told he prayed with his patients pre-op. Check. I was told he calls his patients post-op to check on them. Humm. A bit worried by this point.

Trying to not get overly concerned, but, by the same token, I rememeber what he told my husband post-op, but more importantly, what he did not. He did NOT say, "Good news! It's not cancer!" Instead, he explained that ovarian cancer was believed to be mets from fallopian tube cancer. Sigh.

So, I am trying to not mull on it, to not worry, to rejoice in the pain being gone.

And yes, I agree, pain is how our bodies tell us something is wrong.

In your situation, it almost sounds like you have sciatic pain. Are you sure you do not? That pain pattern sure sounds a lot like it. I fell into the trap of assuming my pain was from one thing, all along when it was really from something else.

Just sayin...

reply to post by Libertygal


HI
Learning to walk again could be a challenge if any 'walking parts' took on a 'new form' in the interim. ....an interesting adventure for sure.

I would be concerned re the Dr.'s not saying things to you and hubby, as he does with others, but then perhaps he was so in the dark he had nothing yet to say?

Time for me to see my Doctor regarding this pain. It is so insistent, throbbing, burning, that I spend sleepless nights and that is not good for the mind. Then I nod off during the day, and all is lost for doing anything. (I do sense that I might be drifting in between sleep and awake, knowing what is happening, but not quite "with it" for the time lapse etc.) Right now as I sit, my thigh cannot stand a synthetic nightie resting on it. From the beginning I kept the bedcovers away from my knee, which was the most exposed part.

I had this same burning pain when the proximal end of the femur was broken, March 27, 2009. It eventually passed....about 4-4½ years.

Keep on, keeping on!

Preliminary results are in, no idea what specimens have been sampled and which have no, but so far, no cancer! I am happy, but almost afraid to get too excited before it's all in. I can't help but feel immense relief, though!

Still waiting on the hospital bill. Spent another 200.00 on prescriptions last night.

At this rate, I should cap the pharmacy deductible sooner than I expected, as well!

Ubelieveable, still, the out of pocket costs. Thank God at this point, I am not facing chemo and the prospects of having to make the decisions that were possibly looming over that horizon!

reply to post by Libertygal


So far, so good. HUGS!

Just dropping in for an update.

The final pathology report is in, and NO CANCER!

I was doing the Happy Dance yesterday, albeit, carefully! Back to work Sunday night, officially. The doctors office did seem a bit concerned I was going back so soon, but since I have a desk job, I assured her, no heavy lifting!

Anyway, after I am fully healed, and go back for my post op visist, which is the 11th, I will be heading back to my primary care for my every 3 month blood draws.

From there, I suppse I will see what she wants to do about the kidney thing, but due to the pathology from surgery, I know, at least, the kidneys are NOT shedding cancer cells into my abdomen!

Still have sciatic pain and now numbness in my right leg, so I will likely be pursuing more epidural steroid injections.

For all the stories in the news about the insurance horror stories being fake, anyone that has followed my story knows it is anything but.

Thankfully, it did turn out to NOT be cancer, but, as you can see, the expensne is still enormous compared to what I would have paid, had I still had my HMO.

My expenses, for pharmaceuticals alone, have at least quadroupled what they were just last year, nevermind my major medical.

How anyone can justify this as "helping" others without insurance, I don't understand. In fact, pharmacies have increased the cost on generic drugs, seemingly in anticipation of making higher profits off the new laws. That alone, should infuriate anyone.

Add to that what I am paying for premiums, the huge deductibles, how, exactly, is this helping anyone without insurance? I know for a fact the insurance company I use is NOT a participant in the exchange.

I must be slow, but I wish someone could explain this to me...

reply to post by Libertygal


I am so happy for your update of no cancer! That is marvellous!

Even though you have other issues, this one is the best news!

The Health Insurance is the worst, to me right now. I cannot believe this happens in the U.S.

In Canada (let me use the last 5 years, after the car hit me), 3 surgeries, medications, Home Care visits after hospital discharge, therapy, ambulance trips back and forth for second and third surgeries, ----no charges at all.

Then the same with this last broken leg, ambulance N/C, taxi vouchers, Medi-Van home, more medications BUT I did have to pay for my 4 week stay in the Rehab facility, $720. That is where the negligence and pressure sores happened, but now have the Home Care again for dressing those wounds which is N/C, and will continue.

I read horror stories re Health Care in the U. S. and do not understand---what was before and now how terribly expensive it is! Frankly, I have no use for Obama! The way I see it, he is moving the middle class to the poverty/homeless level, while those already there will be eliminated.

Enlighten me if you will?