Advice, please

[xmas74]

I've had post menopausal bleeding nonstop since October 2021 with lower back pain, cramping, fatigue. When I lay down the right side of my abdomen is higher than my left side. In December 2021 a large mass was discovered on my left ovary. In January 2022 I had a D & C. My gyn stated that my bloodwork, the appearance of the mass and my symptoms appear to be ovarian cancer. She referred me to an oncologist.
My appointment was the first week of February. He wanted an MRI. They weren't able to do the MRI until yesterday. The tech was rude and awful. (I only mention this because any further testing and treatments would be performed at this same hospital. She knew I was alone and picked until I cried.)

The results from radiology were available that afternoon in the patient portal. It states I have a 20 cm mass on my left ovary, a 10 cm mass on my right, noticeable thickness in the lining of my uterus. It also states that the left mass has pushed the uterus heavily to the right and that it's no longer where it should be. It also states that the weight of the masses are "compressing" my kidneys and that both kidneys show severe inflammation.

I've called the oncologist office and asked what I should expect now. I was informed that the next step would be possibly more bloodwork and then a discussion of the results at my appointment in April. I called my local gynecologist who made the referral and the nurse stated they thought I'd already had my first round of surgeries and they just didn't have my EMR yet.

I'm in pain all the time. I'm taking no medication because nothing has been prescribed. Everything is supposed to wait until April for a "discussion".

I want a second opinion but it was insinuated that I was overreacting. Am I?

[FeelingBlue]

1. No.

Gather your friends and share your experiences with them. You- and they- will have to advocate for you. The American medical community won’t do that for you, sadly, no matter that we pay a lot for their services.

Bon courage. Make a plan with your friends to learn and plan together. I wish you well.

[xmas74]

3. Thank you nt

[CaliforniaPeggy]

2. I can only tell you what I would do if I were in your place.

I would have it all taken out now. I would not hesitate.

You say you're postmenopausal, so that means that there's no reason to keep this mess inside you, where it's damaging you.

I don't think you're overreacting. Rather, my feeling is that you're underreacting. This sounds like an emergency to me, and I would tell my gynecologist that I want a hysterectomy plus ovaries gone immediately.

This is definitely my take on your situation.

I hope you can come through this ordeal in much better shape than you are now.

[xmas74]

4. The gynecologist wants it gone

She sent me to an oncologist because everything points to cancer. His office is in a bigger city and his facilities are more advanced so she thought I'd receive better care.

[CaliforniaPeggy]

5. After the way you were treated there...I'd stick with your own gynecologist!

I suspect the care you'd get from her would be a whole lot better and more humane than the care from the oncologist.

After hearing your description, my reaction is get it out now and the sooner the better!

[xmas74]

6. She won't do it

The hospital was purchased by a larger group a few years ago and changed some of the care they give. A friend is an OR nurse there and she informed me when this first happened that they only do hysterectomies in emergencies, per policy. All others are referred to another facility.

[CaliforniaPeggy]

9. Well, that takes care of that option!

I would call that oncologist and see if you can't get things (like surgery) expedited so that you can start recovering.

And I agree with the poster after me who said report the tech who abused you. This is unacceptable behavior.

Your surgery needs to happen, and ASAP.

[No Vested Interest]

11. I agree with all that Peggy said here and below. You need a surgeon lined up ASAP.

Do call on your daughter or parent in this instance. Either will feel worse than now if/when they discover they could have saved you even some of the suffering you're going through. Every patient looking at surgery needs an advocate before, during and after.

I had the post-menopausal bleeding occasionally over a period of years and D&Cs; was finally told uterine cancer a possibility/probability, had a complete hysterectomy and recovery with little problem and none since. I was told it was stage one cancer, no further treatment needed.
You do not need the mental suffering, let alone the physical problems you are dealing with.
Peace be with you.

[58Sunliner]

7. Hell no you are not overreacting.

Please get a second opinion and a copy of your MRI on a disc that you can take with you. I am so sorry you are going through this. I do not understand why you are not being treated for pain and the inflammation. Also having to wait another month is punitive. I may be out of touch about time frames, but they should be having at least a phone consult to talk to you about your options.
I would also complain to someone about that nasty tech. I know it is an uncomfortable thing to do, but demand someone else and let them know why. My partner had a crappy radiation tech who decided she did not need to measure to make sure she hit the right area. He complained and they changed their tune real quick. Do you have a support group you can attend? Maybe get someone to be an advocate for you while you cope with this and someone who could talk to the doctor? Can I ask where you are?

[xmas74]

8. No support group

A couple of friends who would advocate but are either burned out having worked as front line medical this entire pandemic or two who are immunocompromised and don't need this. My daughter is a full time college student and works part time-she doesn't need this stress. My parents are dealing with one siblings recent diagnoses of Lewy Body and another with stage 2 breast cancer. They don't need this and I don't think they can handle it all.

I'm kind of alone in this.

[58Sunliner]

18. I'm sorry to hear that you are having to go this alone.

Are you near a major metropolitan area? I know here in RVA they have a good cancer center and I think they help you with housing. I'm trying to get an idea of what resources you may be able to tap into.

[wackadoo wabbit]

10. Let me give you some hope, and also a little advice

First the hope: I was in about your same position about 25 years ago. I don't remember the exact measurements, but my gynecological oncologist (hereinafter known as GO) said that my left ovary had a mass that was the size of a grapefruit, and my right ovary had a mass that was the size of a cantaloupe! He was so impressed with the size of the cantaloupe one that he actually took pictures of it before removing it (I still have the pix around somewhere).

In addition, my CA 125 test (that's the test that looks at the amount of cancer antigen 125 — hence the name — you have, which is a marker for ovarian cancer) was close to 200 (normal is less than 35). Before I finally got to my GO, everybody, including doctors, was totally freaked out by my symptoms, the size of my masses, and my CA 125 numbers.

My GO, on the other hand, was blase. He said that it almost never was cancer unless the CA 125 was over 500, so he was fairly certain that what I had was just ovarian cysts.

And indeed he was correct.

It was more than a month before I finally had the surgery to remove them. (Remember, in my case I had met with my GO not that long after diagnosis and he had reassured me, so while I was still concerned, I was no longer panicked.) They were only cysts.

You said that you had some bloodwork done. I assume they did a CA 125. What was your result?

Now the advice: it's never a mistake to get a second opinion. And no, you're not overreacting. When something like this happens, even if it turns out to be nothing, it's never an overreaction!

If you haven't even been in to see a gynecological oncologist yet, and you can't get in to see the one you were referred to, maybe you do want to make an appointment with another one. Just in case, it won't hurt to either be reassured that they're probably cysts or the GO will want to do surgery immediately, if they think they're malignant. Either way is better than the limbo you're in now.

I admit, the fact that no gynecological oncologist has actually checked you out yet — and, believe me, you want a gynecological oncologist for this! — so no one is actually sure if these masses are malignant or not, yet they're still dragging their feet, is more than a bit concerning.

I have lots more advice, but this is already a wall of text so I'll end here. Let me know if you have any questions (or want some more advice!); I'll be happy to answer and help in any way I can.

I'm rooting for you!

[xmas74]

14. My CA 125

Was 748.

[wackadoo wabbit]

19. OK, that's not ideal, but it still doesn't definitely mean that your masses are malignant

My gynecological oncologist, at the time he told me that a CA 125 under 500 was virtually never malignant, also said that, generally, a CA 125 over 1,000 meant that the mass was probably malignant. I specifically asked him (I'm a curious sort) what it meant if a CA 125 was between 500 and 1,000. He said that it could go either way. So it appears that you're in that gray area.

You asked for advice, so I'm going to give you some. If I were in your position, I wouldn't wait another moment. Downthread you said that there's a good gyn-onc at MU, but you're not sure if your insurance will cover them. Call your insurance company first thing on Monday to find out! Then make an appointment immediately and explain that your situation is time sensitive. Try to get in that week if you can.

If your insurance company won't cover out of state, then go to the best gynecological oncologist you can find that it will cover. For health, a one-hour drive is nothing at all.

(As an example, when my husband had cancer, we went to the best oncologist that our insurance would cover. She was 2.5 hours away, so it was a 5-hour roundtrip drive (which was great fun when he was doing chemo three times a week). But it was worth it.)

Your health is worth it.

[babylonsister]

12. Hello, and here's what I did...

last year I had a cyst on my ovary, long story short I wound up having a total hysterectomy (laparoscopically). I started at urgent care where I luckily and happily took the 800mg of ibuprofen faithfully and that kept the pain at bay.

When this surgery was performed the gynocological oncologist failed to get any lymph nodes for testing and cancer cells were found on the removed ovary (I had already had the other one removed decades before). Had to go back into surgery to retrieve some lymph nodes so you might want to remind your surgeon to get some nodes while he/she is in there. During the second surgery he also took my appendix. At this point I'm not caring; take whatever you want/need to allow me to be cancer free. I am also a breast cancer survivor (again, decades ago).

I think I would have to insist they get those ovaries out of there at the earliest opportunity. There should be nothing holding them up, especially endless testing; also, please get some meds. Even the ibuprofen helped tremendously.

Finally, may not happen to you but I got a hernia after these two surgeries which I still have not had fixed (covid). Apparently that happens a lot.

Good luck to you; you need a doc who specializes in this. There was only one in my whole county; he's a busy guy, but this prevented me from any second opinions. I don't think you need a second, you just need a hysterectomy ASAP.

[xmas74]

15. My gyn said she thought everything needed to come out.

My PCP's office also called me for follow-up, thinking it was all done. Both offices are shocked that nothing but bloodwork they both did before referring me is all they've done
I don't have a gyn oncologist in my county. I'm driving an hour one way to see him. If my insurance will allow me to cross state lines there is an excellent practice with KU (Kansas University) just over the state line. Crossing the state line would only add another 15 minutes to my drive.

[babylonsister]

16. I think your PCP needs to be more involved;

isn't that what they're for? Instead of waiting for your insurance, you might want to call the excellent practice and see if they are able to take you. They will know if you can cross state lines, no doubt.
What a pickle, and meanwhile, you're still in pain. I would go to an urgent care today or somewhere you can get something prescribed to ease the pain while this gets straightened out.

[xmas74]

20. I went to urgent care

I have no history of drug seeking but was accused of it. I stated that they could see from my EMR that there were definitely issues of concern and I'm in pain. The nurse practitioner stated that they've witnessed far too much drug seeking,know what it looks like and that I could take a Tylenol for the pain.

[babylonsister]

21. I understand their concerns but that's ridiculous.

Maybe try another, or the emergency room? I hope you have appointments ASAP with someone who will listen. So very sorry you're going through this.

[Scrivener7]

13. ABSOLUTELY NOT! You are not overreacting. You should have a second

opinion about any major health issue, and any doctor who insinuates you shouldn't should not be your doctor.

I'd get a second and if this oncologist or gyno was the one who said no second opinion, drop them.

[TNNurse]

17. Please call your gyn and say

how you feel and what you want. You are not overreacting, you clearly need surgery now. As a breast cancer survivor, I appreciate the speedy reaction and intervention. I had one positive lymph node that "looked like it was ready to burst".

Please let us know you got help.

We are all thinking about you.