Is this typical??? And how does one deal with it?

I had BC diagnosed in May of 2018, had a DMX that summer and chemo in the fall. In September I finished my year of herceptin and perjecta (HER2+), and I continue on AI, since one of the cancers was E+. But I'm more or less done with treatment as of a month ago.

Except that I'm not done. Last spring I had 2 "false positives" in which my oncologist thought I might have mets. There was a lump under my arm that needed to be imaged (turned out to be scar tissue) and a purported brain thing that turned out to be nothing in a subsequent MRI. But the 3rd episode is going on now and it's really scary.

When I was diagnosed last year I was found to have an ovarian cyst. I'm many years post menopause. My gyn recommended re-imaging in a year. The re-imaging last summer suggested that it had marginally grown (but could be within measurement error!) At first my onc said more watchful waiting would be reasonable, but then at the next appointment he changed his mind and sent me to a gyn oncologist. At the same time, some blood work indicated that my CEA (carcinoembryonic antigen, I think) was about twice the normal range. Other tumor markers are fine, and I'm not BRCA positive. The gynecologic oncologist said he thought my ovaries and fallopian tubes should be removed for biopsy. So that's scheduled in a few weeks.

I haven't heard from my onc's office since I saw the gyn oncologist & found out about the tumor marker. To make things more complicated, my ferritin is really high. I have a weird swelling in one of my feet, and my internist is doing a complicated workup for that.

I called my onc's office to ask about the tumor marker & the odds I have ovarian cancer, and they just said to see how the surgery goes. This process has been long and drawn-out, taking over 2 months since my onc first referred me, and I'm really just melting down at this point. Typically I do much better when well-educated about my condition-- I did great throughout my diagnosis and treatment. But it seems that I'm sitting in a gray area now, where I may or may not have another cancer. I can't possibly speed this surgery up. I'm particularly nervous, b/c we didn't do any further imaging when I was first diagnosed, which makes me wonder if I've had another cancer all this time. I'm getting uncharacteristically tearful and having trouble sleeping. BTW, I had another cancer in my 20s to 40s (chondrosarcoma) that was misdiagnosed and required a lot of effort from me to get it treated properly. My ability to trust physicians completely is pretty limited, after that experience.

So I guess I want to ask: How typical is this experience of multiple investigations for further cancer, just as I'm completing treatment? It just seems bizarre to me. Second, how concerned should I be about ovarian cancer? This is a small cyst, so I have trouble thinking it's cancer, but the tumor marker elevation worries me, and I don't know how significant it is. Third, should I get a second opinion on my condition & treatment course? It's worrying that my oncologist isn't talking to me about this-- or providing any more information other than to wait till after surgery. And finally, any suggestions for how to feel better emotionally? Thanks so much!

Hey, Wendy. I'm so glad I logged in today and found your response! Somehow connecting with someone else in the midst of this.... well, it just feels better. I'm so sorry, though, for what you've been through, especially as young as you are! (I'm 62.)

Let me check and make sure I understand correctly--- You were diagnosed as Stage 3, though your info indicates a 1 cm tumor-- oh, it's because of the nodes, right? I was so lucky-- My biggest tumor was 2.5 cm, but the nodes were clear. With the new results, it sounds like they have found a primary gynecological cancer as well, in your lungs, although they can't find gyn cancer actually in your gyn system, right? That's a helluva situation to go through!

I had 6 rounds of carboplatin/Taxol, because one of my tumors was HER2+. I had a really tough time with it, b/c I developed nausea and vomiting that we had trouble getting under control. But my onc worked with me till we found a medication that did control the n/v pretty well. I wish you well with it-- Apparently most folks react better to it than I did.

So I'm facing the possibility of a similar surgery, although there's still a chance that the ovarian cyst isn't cancer. They can't tell until I have it removed, and they'll get the biopsy results while I'm still in surgery. So I'll wake up and find out whether or not I really did have ovarian cancer and how extensive the surgery really was. He said he would do the debunking immediately if they find ovarian cancer.

The thought of waking up to this news is totally depressing to me. I go completely back and forth on this..... At times I think that cyst is only 1.5 cm and most likely is just a cyst. But I know that HER2+ tumors are more likely to metastasize to the ovaries, and because I'm post-menopausal, having a cyst at all is odd. And then I get completely panicked.

I seem to do best if I just focus on something else, like work, although that's really difficult. My oncologist hasn't talked with me at all since the tumor marker came up positive, and I find myself kind of unreasonably mad at him. I cope better when I have all possible information, and this time I have far less than when the breast cancer was diagnosed.

Do you have any idea how they will treat the lung met? Will they do surgery? I don't really know anything about that treatment other than what you've already shared. Do you have any children who are affected by this? I'm praying that it's not another cancer, for my 24 y/o daughter's sake. I don't have a genetic cause for all of this (they've done the workup), but I know it must be hard on her. I have a son, too, up in DC, who's having a hard time with all of this.

Please know you are in my prayers. Here's hoping the carboplatin/Taxol scares the heck out of that lung met and destroys it completely!!! I will try to figure out how to PM, which is a bit beyond my current technical skills. I'd like to chat more......

Best,

Leslie

I have heard that ILC can spread to the ovaries, but have not read anything about HER2 factoring into this. Perhaps she was thinking of the ILC being aggressive because of the HER 2?

Thanks, folks, for responding. I'm sorry I've been away for so long. Things kind of took off since I posted last. My surgery was on December 12th. Yep, a gyn oncologist is who I've been working with, and he recommended having at least both ovaries and fallopian tubes removed. The surgery went ok, but then I developed a post op infection, so I've been lying low and taking antibiotic, but I'm getting better now. The biopsy will be back around the new year, but the surgeon said he'd be surprised if the cyst is malignant. I'm really so tired of going through this process of being worked up again over and over. After all of this, I don't even know if I'll ever feel like I can relax and feel well again. It's really frustrating to try to move forward again after cancer, to invest in my career again and plan for the future-- and then have to put all of that on hold again while I wait on another biopsy report. I can't both move forward and stay in suspended animation at the same time! But I know you understand that feeling, too. Oh, I'll try to find the reference about HER2+ and ovarian CA-- I just don't have it handy now. If I can find it, will post it here. Thanks for responding, y'all...

I just wanted to let y'all know I saw the gyn oncologist last week, and the biopsy came back completely benign. He was funny-- he admitted he was a little worried about whether it would be malignant and was really relieved when it wasn't. Which was the same game I was playing! I suppose we all cope in our own ways...........

I told my brother, a physician, the other day, and he commented that now I could "completely put the cancer behind me." I told him that as a survivor, you can never put the cancer away for good, b/c of the threat of recurrence. I have learned that sober fact from this website, and I kind of marveled that, as a physician, he wouldn't know that. But I will still take my current circumstances, hands down. I know exactly how fortunate I am at this moment.

I'm so grateful for your support when things were really, really difficult, and I want you to know that. This community is beyond words. Thank God it's here!

Fairchild, congrats on your benign results. So happy for you. I hope you'll be able to finally come down a bit. Best wishes, G