Unsure about treatment

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MindySueS
MindySueS Member Posts: 5

My head is going to explode. My emotions are everywhere, and I am so unsure about everything. About me: I will be 55 in August. I still have a regular cycle. Here is my timeline so far:


March 31 – core biopsy

April 7th – excisional biopsy - lumpectomy

April 13th – diagnosis DCIS In Situ

April 28th – appointment to discuss treatment

The pathology report says they a removed tumor - 3mm

Nuclear grade 1

2.5mm clear margin

100% ER positive

40% PR positive


The treatment recommended is Tamoxifen and radiation. Everything I have read about Tamoxifen is not good. Would having a oophorectomy be an option? Is Arimidex a safer and/or better medication? My doctor feels that mastectomy in my situation is not an option. Should I have them both removed. OMG. Don't get me wrong, I am VERY grateful that I have the option to make these decisions. I am grateful that this is not invasive. I just don't know what to do.

Comments

  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited April 2016

    I'm sure that others on the boards will be along to give you more detailed advice than I ever could, but....I'd suggest simply "Don't rush into things." It sounds like you've found this very early on, so, tempting though it may be for the patient to rush into the most aggressive treatment available, take time to get used to this 'new normal'.

    You can always come back and have a mastectomy, a hysterectomy. But you can't undo them, once done.

  • Annette47
    Annette47 Member Posts: 957
    edited April 2016

    Lumpectomy with radiation and Tamoxifen is pretty standard, but you can always look into risks/benefits to see whether that makes sense for you. Your DCIS was grade 1, which is the least aggressive and was tiny, plus at 55 I would assume you are getting towards the end of your cycles, so I wouldn’t be surprised if it was ok for you to forgo at least the Tamoxifen, and possibly even the radiation.

    You need to discuss with your medical team what your recurrence/new primary risks are with and without each treatment, and decide what you are willing to live with. They can’t force you to do anything - ultimately it will be your decision.

    In my case, younger (45 at diagnosis) with a much more aggressive though equally tiny cancer, my oncologist said Tamoxifen would be “up to me” and that he would be comfortable either way. As he explained, most of the side effects people complain about (hot flashes and the like) go away once you stop the drug, so you could always do a trial run. That’s what I did, and 3 years later I am still taking it - it really hasn’t been bad at all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    as Annette said, tamox and radiation are the standard, but since it was small and grade 1, maybe radiation will not be needed? (I would get a 2nd opinion). While having ovaries removed does decrease your overall risk of invasive bc, it wouldn't treat the DCIS you already have (you would still need tamox and possibly radiation), and it is an invasive surgery with lots of SEs. I would also suggest you take your time, don't rush into any hard and fast decisions.

    anne

  • Mimi27
    Mimi27 Member Posts: 2
    edited May 2016

    Being unsure of what path to take is the norm in this situation (at least for me), so I can relate. All of the info and possible paths are simply overwhelming, but I agree with the other posters; don't rush into anything. You will get through this! Similar to you, I will be 55 in October and am peri-menopausal. Diagnosed with and being treated for grade 2 ER+/PR+ bc. I went back and forth about whether or not to have an oophorectomy, and for me, I think the better choice is to keep my ovaries. If you are ER+ and PR+, you may not be able to take HRT afterwards. To me, this was important, plus the possible long-term side effects of the oophrectomy didn't appeal to me due to some family health history. You may want to look into those side effects, if you haven't already. My understanding is that pre-menopausal women will be given tamoxifen and then after menopause, be switched to arimidex. I think that everyone's reactions to all this medication that we are prescribed is different. I had radiation, and it wasn't bad for me, although I didn't feel myself during my treatment, but it is over and I am fine. I know someone who was in a similar situation as you and opted for a double mast and implants just so they wouldn't have to deal with all of the other treatments. Not saying that this would necessarily be the right choice for you, as everyone's situation/treatment plan is not the same. I would also obtain a second opinion. (Posters: please correct me if I am misstating anything, as I am a newbie.)

  • ShaneOak
    ShaneOak Member Posts: 206
    edited May 2016

    Ask lots of questions, research all your options, and talk to people here who have experienced all those options. This is the best place you'll EVER find for a variety of feedback.

    I can't emphasis enough to not feel pushed by anyone else to do anything. This is YOUR body and although it's scary and uncertain and overwhelming, you will settle on a course of action that feels right for you!!

    You have a ton of options it sounds like so that is very positive!

    Sending you a bug hug!!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited May 2016

    An oophorectomy and/or ovarian suppression will not eliminate all the estrogen in your body: your adrenals and fat cells secrete a substance analogous to an androgen, and the enzyme aromatase converts it to estrogen in the form of estradiol. Tamoxifen blocks the hormone receptors on cancer cells so the cells cannot get the estrogen they need to divide or even survive. But aromatase inhibitors prevent the manufacture of estrogen by your adrenals & fat cells. Think of yourself (but only for this analogy) as a Twinkie-addicted tumor cell. Think of aromatase inhibitors as the saboteur in the Twinkie factory--whether or not the machinery is working, they steal the sugar and dump it into the sewer so the Twinkies don’t get made. Think of Tamoxifen as chaining & padlocking the pantry, or getting your jaws wired shut so you can’t eat the Twinkies.

    In postmenopausal women, AIs have been shown to more effectively reduce recurrence and extend survival by several percentage points (depending on OncotypeDCIS--or for invasive cancer, OncotypeDX--results) and at least a year or two respectively. One treatment modality in perimenopausal women (or older women who would not be expected to still have periods) is to suppress the ovaries, administer tamoxifen, resulting a sort of menopause so that they can then be placed on the more effective AIs. But one advantage of tamoxifen over AIs is that since it doesn’t eliminate estrogen, it doesn’t weaken bones (and because perhaps the circulating estrogen can’t get to the tumor cells, some of it is redirected towards the bones and strengthens them). AIs, however, seem to cause less weight gain, fewer cataracts and are less cardiotoxic. (I wonder how much of the latter differences are due to the fact that AIs don’t reduce estrogen as abruptly in already-naturally-postmenopausal women as tamoxifen and ovarian suppression or removal do in pre-and-perimenoupausal women).

  • LAstar
    LAstar Member Posts: 1,574
    edited May 2016

    With a small amount of grade 1 dcis, you definitely have some time to read up, get a 2nd opinion, and make your decision.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2016

    don't be afraid of Tamoxifen, the majority of women tolerate it very well. I have been taking it for over a year, and I am not experiencing any side effects except for the occasional hot flash, which I probably would be getting anyway due to chemopause

  • tsoebbin
    tsoebbin Member Posts: 474
    edited May 2016

    What a very helpful thread. I have a similar DX and understand how you are feeling. These replies to take it slowly are very helpful. I'm taking it one step at a time for my multifocal grade 2 DCIS. Lumpectomy on the 11th and will make some decisions after final pathology.

    Rads? Tamoxifin? Not worrying about those this week. I'll save those decisions until I know more and get 2 opinions before deciding.

    Hugs to you. I understand and hope you are feeling well today.

  • reniebeanie
    reniebeanie Member Posts: 11
    edited May 2016

    Hello,

    My 50 yo mom had clear and bloody discharge from her left breast, and went in for a mammogram, then a 3D ultrasound, but nothing was seen until she had an MRI. They saw 3 2cm masses, and performed a biopsy that came back with secretory-like findings. Originally, her doctor said it was stage 1, grade 2 and triple neg. He said she had a very good outlook and wouldn't need chemo or radiation, only a lumpectomy. Then he came back and said she would need chemo, and came back again 2 weeks later saying she wouldn't. She just had a double mastectomy 2 days ago. After the surgery, her surgeon came out and said they got all of the cancer and that her outlook with secretory was good. The pathology report just came back today saying that she had 2 tumors in the left breast. One was 0.6 cm and the other was 6 cm. The report says the pathologist found DCIS, cribriform and micro papillary, and secretory types. It also says she is stage 3, and her doctor says she will need radiation or chemo. What I don't understand is how 5 months ago there was nothing on a mammogram, she only had 2 cm masses, was stage 1, and wasn't going to need chemo. Now she has a 6 cm mass, is stage 3 and probably needs chemo. How could they have missed a 6 cm mass? How did it take her doctors 5 months to figure out what was wrong with her? I feel like they have no idea what they are doing, and I need to find her a doctor that has treated invasive secretory carcinoma before. I'll take her anywhere. I don't care if we have to travel to the other side of the country. Any suggestions?

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