Recurrence far worse after DCIS

Wow, I am sorry Fred has come back in a big way. I have no great words of wisdom. I am so much older and way past having children. I have heard of people coming off tamoxifen to have a baby. I took AI drugs for 4 years, not very fun. I still feel side effects from it.

I recently had a scare but it turned out be nothing. Getting this back again is the worst. I hope some of the younger people start posting soon.

Good luck to you.

I am a little confused. If you had bilateral mastectomy, how did it come back in the same spot?

Hi I2y20102015:

You mentioned: "This is the part where I get frustrated and just generally don't know what to do. Really needing advice. I could opt for the Tamoxifen for 10 years which kind of throws me into sort of a menopause for that time frame (not looking forward to that), also I'm awful at actually taking pills consistently. Or the oophorectomy which puts me in actual menopause. Those are very stiff eye opening options in my opinion with no other alternatives."

Re tamoxifen, you mentioned that you are awful at taking pills, and then mentioned the option of oophorectomy. Did you receive a recommendation for oophorectomy alone, or oophorectomy plus tamoxifen or an AI? I ask because, even in post-menopausal women including women who have received a bilateral oophorectomy, either tamoxifen (to block the action of estrogen on breast tissue) or an aromatase inhibitor (to block the production of estrogen from other tissues) would also be recommended. In other words, typically, oophorectomy plus tamoxifen or an AI is recommended.

Instead of oophorectomy plus tamoxifen or an AI, some women are offered the additional option of ovarian suppression drugs plus tamoxifen or an AI. If this was not discussed with you, please seek further consultation for more information. It seems like if [edit: tamoxifen alone oophorectomy plus a drug] would be an appropriate option, then ovarian suppression plus tamoxifen or an AI should theoretically be an option, absent some contraindication or special consideration.

I've summarized the general options elsewhere as:

Pre-menopausal:

(a) Tamoxifen alone; or

(b) Tamoxifen plus Ovarian Suppression ("OS") (to suppress/shut down ovarian function, e.g., with a second drug); or

(c) Ovarian Suppression ("OS") plus an Aromatase Inhibitor ("AI") (in pre-menopausal women, use of an AI requires added OS to shut down ovarian function; using both is intended to stop estrogen production from all sources)

If oophorectomy is received, see post-menopausal options

Post-menopausal (this includes patients whose ovaries have been removed by bilateral oophorectomy):

(a) Tamoxifen; or

(b) Aromatase inhibitor

Tamoxifen, aromatase inhibitors, and the drugs used to induce ovarian suppression have different side effect profiles. Oophorectomy has different health impacts. The choice between tamoxifen alone and other more intensive approaches is a personal risk/benefit analysis, in light of one's presentation, including the risks of loco-regional and distant recurrence, risk of new disease, menopausal status, and overall health and presentation, including medical history or co-morbidities that may be potentially relevant to the particular side effect profiles of a specific drug or intervention. Pre-menopausal women of child-bearing age have additional considerations.

The situation of recurrent disease is not very extensively studied. Be sure to ask how that may affect understanding of your risk profile.

Please ask your MO to explain all of the various approaches, their associated side effects, and obtain opinions about whether your specific case may warrant one of the more intensive treatment(s), in light of your personal risk profile. If your MO is not responsive to your questions or you would like additional discussion and expert input on this important decision, please do not not hesitate to seek a second opinion from another MO.

BarredOwl

And if you're concerned about preserving your fertility (and it sounds like you are), ask for a referral focused on that (for others, you might even want that referral before you have chemo, etc.).

HTH,

LisaAlissa

Hi LisaAlissa:

You posted while I was crafting my second post and revising my first post to add the very general comment: "Pre-menopausal women of child-bearing age have additional considerations."

Requesting a referral for fertility counseling in connection with this decision is an excellent recommendation.

BarredOwl

Tiff, glad to hear you will be consulting with a second onc. Personally, I couldn't make an informed decision based on the information that the first onc gave you.

SeaChain - I too had a double mastectomy for DCIS and had a recurrence with IDC. Some of those sneaky little microscopic buggers escaped the clean margins & negative SNBs. It happens more often than you think.

I2y2 - can you consider harvesting eggs & freezing them for future use?

I had cystic ovaries all the time, starting at age 13 (one burst at the same time I had a hot appendix--the surgeon did the operation almost as a differential diagnosis and was shocked to find that both things were the cause of my pain and elevated WBC).

Might be a good idea to harvest some eggs and freeze them. Endocrine therapy is usually 5-10 years, and you are very young for an ER+ bc patient. It usually reverses itself (your liver can resume making aromatase and it begins to turn the androgens made by your adrenals & fat cells into estrogens after that), and if at the end of the therapy w/o OS or oophorectomy, your ovaries resume pumping out estrogen (as, at only 10 years hence they still might), your recurrence chances increase, especially as tumor cells tend to be more aggressive in younger women--especially given the tumor’s size and grade. Permanently getting rid of the one source directly making estrogen is prudent--although it does impact fertility. Hence the egg-harvesting.

Because of the different histology and hormone-receptor profile, despite its location Fred II was probably a new primary, actually Frederika, not a recurrence of Fred I. Despite Fred I having been TN, that’s not unusual for DCIS and almost nobody has chemo for that. And because you had a BMX, no radiation for it either. No sense in beating yourself up and engaging in “what if”s. That was then, this is now, and it is what it is (Lord, I hate that phrase).

A recurrence can have different receptors than the original tumor tissue following chemo, though, so not sure that all "new primaries" that pop up in same spot as the prior cancer are really new... http://www.ncbi.nlm.nih.gov/pubmed/24183366 This study is specifically about neoadjuvant chemo, so it is easier to be sure you are talking about the same tissue, but the bottom line is that chemo can affect receptors.

I2, sorry you are in this boat. I'm a recurrence too, so I can relate, although I didn't have to worry about the fertility issues. They will probably want you on hormone therapy. If you have ovarian cysts and thickening of the uterine wall, tamoxifen exacerbates this so this may not be the drug choice for you. Were you already on tamoxifen, because I had this happen on tamoxifen and then as soon as I came off the issues went away.

If tamoxifen isn't for you, in order to take another hormone therapy, an aromatase inhibitor, you have to be in menopause - either through an ooph or ovarian suppression, which is a monthly shot. So unless there's a gynecological reason to do the ooph, you don't have to go that route immediately.

You have the right to ask and if you are confused at all why they are recommending something, or think they aren't telling you everything, you must ask. You deserve to make the best decisions for you, so ask them to explain. i

I2, I am so sorry that you're going thru this. It's hard at any age to be diagnosed with "Fred", but you're so young!

I was also prescribed Tamoxifen for 10 years. I didn't take any meds before, and I was a little wigged out that I would need to take any medication for that long. I have a permanent alert set on my phone, so I don't forget. I've been on it for a year, and it's not a big deal. Also, Tamo doesn't create early menopause. You can have symptoms of menopause, but it doesn't put you into it. I'm 49, and I get my period every month.

I know this is a moot point, but I'm curious why your surgeon performed a SNB when you were initially diagnosed with DCIS? By definition DCIS is non invasive. Therefore, it would be impossible for "Fred" to spread to the lymph nodes.

Sorry you are dealing with this. I do know 2 people who have gone on to have children after 5 years of anti-hormonals; I don't know any who've done 10 years... But the 10 year thing is new. Other women have had eggs frozen and used a surrogate. Hopefully your MO is allowing you discussion with a fertility specialist. Rotten tough decisions. Cancer sucks. Make the best decision you can then plow forward. Best wishes

Hi Seachain, I never said only DCIS, so I don't understand why you put only in quotations. I wasn't being dismissive of her initial diagnosis. Cancer is cancer, and it's serious. I was genuinely curious why a SNB was performed when DCIS by definition is non-invasive, contained within the milk ducts, whether it's a grade 1 or grade 3, so it's impossible (to my knowledge according to my BS and MO)for it to spread to a lymph node. I was initially diagnosed with DCIS, with a possible borderline micro invasion, and because of the possible micro invasion my BS took out a node.

Standard according to whom?