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Breast cancer patient--dr. concerned about ovarian mets [Part I]
Dear Dr. Goodman,
[I can't seem to fit this in the character limit, so I'm sending it in 2 parts--sorry for the long post!]
I'm 35, diagnosed w/ breast cancer in 4/2010--Stage 3 poorly differentiated IDC, Grade 3, ER+ (>95 %), PR+ (70%) & strongly HER2+. I was dismissed by my gyn in 2009--said my lumps didn't 'feel like cancer' to her & I was too young, so by April, my area of invasion was 10cm+ & inoperable. They said that at least the 5 lymph nodes they could visualize on MRI & U/S were cancerous & removed one to check my hormone status. They found extranodal extension & that 80% of the lymph node they took had been "replaced with metastatic IDC". It had also spread to 1 supraclav. node. I had neoadjuvant A/C, bilat. mastectomy & ALND. Surgery showed a great chemo response. I then had Taxol, radiation to the chest, axilla & supraclav. area. I still get herceptin and started tamoxifen 3/11.
I've been having lower rt. side pain for 6 mos. My oncs thought maybe pain from treatment until I started to have lots of pain/bleeding between periods 6/11 (my periods returned post chemo on my normal 28-day cycle in 2/11). My onc sent me to my gyn since I’m on tamox. I had an endometrial biopsy (ok), then transvag u/s (Sept 29). She found a multiple cysts on both ovaries—some simple, some complex. She's concerned about the solid components in the complex & said I could go straight to surgery or wait & do another u/s in Nov. Not ready to lose my ovaries, I told her I’d wait.
[Cont. in next post]
[I can't seem to fit this in the character limit, so I'm sending it in 2 parts--sorry for the long post!]
I'm 35, diagnosed w/ breast cancer in 4/2010--Stage 3 poorly differentiated IDC, Grade 3, ER+ (>95 %), PR+ (70%) & strongly HER2+. I was dismissed by my gyn in 2009--said my lumps didn't 'feel like cancer' to her & I was too young, so by April, my area of invasion was 10cm+ & inoperable. They said that at least the 5 lymph nodes they could visualize on MRI & U/S were cancerous & removed one to check my hormone status. They found extranodal extension & that 80% of the lymph node they took had been "replaced with metastatic IDC". It had also spread to 1 supraclav. node. I had neoadjuvant A/C, bilat. mastectomy & ALND. Surgery showed a great chemo response. I then had Taxol, radiation to the chest, axilla & supraclav. area. I still get herceptin and started tamoxifen 3/11.
I've been having lower rt. side pain for 6 mos. My oncs thought maybe pain from treatment until I started to have lots of pain/bleeding between periods 6/11 (my periods returned post chemo on my normal 28-day cycle in 2/11). My onc sent me to my gyn since I’m on tamox. I had an endometrial biopsy (ok), then transvag u/s (Sept 29). She found a multiple cysts on both ovaries—some simple, some complex. She's concerned about the solid components in the complex & said I could go straight to surgery or wait & do another u/s in Nov. Not ready to lose my ovaries, I told her I’d wait.
[Cont. in next post]
MEDICAL PROFESSIONAL
Hi There
gosh, what tough issues that you have to wrestle with at your young age!
I would weigh in in favor of surgery for you for three reasons:
1-primarily with ER positive cancer at your age, there is compelling data to suggest that removing the ovaries dramatically reduces your risk of breast cancer recurrence.
2- with breast cancer at your young age, you are at high risk for ovarian cancer
3- there may be a risk that you currently have a malignancy - either starting in the gyn system or as mets from breast cancer now .
one could argue that the most important intervention is removal of ovaries and fallopian tubes. But on tamoxifen with abnormal bleeding, I would lean towards a full hysterectomy as well.
as an aside, I imagine you have been counseled to get BRCA testing. The importance is if you have the BRCA mutation, this may be important information for other family members. For women with BRCA positive gene mutation, that is a current reason to recommend the prophylactic removal of the ovaries and fallopian tubes after finishing child bearing
also there is some compelling considerations for women with BRA mutations to consider prophylactic mastectomies
good luck with everything
bets wishes
gosh, what tough issues that you have to wrestle with at your young age!
I would weigh in in favor of surgery for you for three reasons:
1-primarily with ER positive cancer at your age, there is compelling data to suggest that removing the ovaries dramatically reduces your risk of breast cancer recurrence.
2- with breast cancer at your young age, you are at high risk for ovarian cancer
3- there may be a risk that you currently have a malignancy - either starting in the gyn system or as mets from breast cancer now .
one could argue that the most important intervention is removal of ovaries and fallopian tubes. But on tamoxifen with abnormal bleeding, I would lean towards a full hysterectomy as well.
as an aside, I imagine you have been counseled to get BRCA testing. The importance is if you have the BRCA mutation, this may be important information for other family members. For women with BRCA positive gene mutation, that is a current reason to recommend the prophylactic removal of the ovaries and fallopian tubes after finishing child bearing
also there is some compelling considerations for women with BRA mutations to consider prophylactic mastectomies
good luck with everything
bets wishes
[Part II]
But I really need your advice. I had a follow-up with my radiation onc last week—he's also the Med. Director of the Cancer Center. He's usually pretty laid back, but said that, given my history & the fact that he’s seen breast cancer drop mets in the ovaries, he wouldn’t wait. He doesn’t trust my gyn (the one who dismissed my bc) to do the surgery b/c she doesn’t have expertise w/ovarian cancer (if that's even what it turns out to be). He wants to send me to a gyn onc to do the surgery. My primary Med. Oncologist at the cancer center doesn't deal with ovarian issues/cancer & said it would be rare for mets to occur in the ovaries, so he cautions being too drastic. I also see a hospital onc (my treatment has been split between both places), and she's concerned & wants them out, but she's been wanting to take them all along so I’m not sure if this is clouding her decision.
I've gone from having lots of bleeding to NO bleeding in 6 wks. My hospital onc tested my hormone levels in Sept & found my levels were all in the menopausal range—except for my estradiol which was “extremely high”. No one is convinced that I'm actually menopausal. My primary onc said it's too soon after chemo for the "high" mean anything, but my hospital onc, RO and gyn disagree and say it's dangerous because my cancer was so strongly estrogen positive.
How concerned I should be? I don’t know what to do. I don’t want to have an ooph at 35. But I also don’t want to let this go if it could be serious. I've been feeling like something is wrong for 6 months—having pain, nausea, bloating, constip. (neg. colonoscopy 3/11), 10 lbs of wt loss while eating the same & just feeling not well—so I wouldn’t be surprised if it was cancer, but I also don’t want to overreact. I have these battles with myself—especially after not trusting my instincts with the bc. So confused!
Please help. Thank you!
But I really need your advice. I had a follow-up with my radiation onc last week—he's also the Med. Director of the Cancer Center. He's usually pretty laid back, but said that, given my history & the fact that he’s seen breast cancer drop mets in the ovaries, he wouldn’t wait. He doesn’t trust my gyn (the one who dismissed my bc) to do the surgery b/c she doesn’t have expertise w/ovarian cancer (if that's even what it turns out to be). He wants to send me to a gyn onc to do the surgery. My primary Med. Oncologist at the cancer center doesn't deal with ovarian issues/cancer & said it would be rare for mets to occur in the ovaries, so he cautions being too drastic. I also see a hospital onc (my treatment has been split between both places), and she's concerned & wants them out, but she's been wanting to take them all along so I’m not sure if this is clouding her decision.
I've gone from having lots of bleeding to NO bleeding in 6 wks. My hospital onc tested my hormone levels in Sept & found my levels were all in the menopausal range—except for my estradiol which was “extremely high”. No one is convinced that I'm actually menopausal. My primary onc said it's too soon after chemo for the "high" mean anything, but my hospital onc, RO and gyn disagree and say it's dangerous because my cancer was so strongly estrogen positive.
How concerned I should be? I don’t know what to do. I don’t want to have an ooph at 35. But I also don’t want to let this go if it could be serious. I've been feeling like something is wrong for 6 months—having pain, nausea, bloating, constip. (neg. colonoscopy 3/11), 10 lbs of wt loss while eating the same & just feeling not well—so I wouldn’t be surprised if it was cancer, but I also don’t want to overreact. I have these battles with myself—especially after not trusting my instincts with the bc. So confused!
Please help. Thank you!
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