Stage 1, grade 1 and pre-menopausal
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Kiwi...ahhhh... Thanks for the clarification. MHO... If I am getting confused over who said what, then you certainly must be even more confused by all of the recommendations. May I make a suggestion? Only discuss with each of the doctors their area of expertise. Don't ask MO what RO should do, etc. if you need second opinions, such as about chemo, don't get ten different opinions from RO's. Only ask as many MO's as you want for their opinion. Once you have spoken to a few, then if you are still unsure, ask your primary care physician, or which ever doctor you are closest to, for their recommendation. Ultimately, I think it will all come together and you will "know" what to do. I wish you well.
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Kiwi, most BS recommend breast conserving surgery over mastectomy unless they have the specific concerns that you have outlined. However I would say dirty margins or multifocal disease is a good reason to choose mx. I was going to have lumpectomy and rads until they found a second tumour so then I had mx.
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Min you are like my BC twin!
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Annicend - I thought the same thing! Glad to find someone else in the same boat as me. I haven't found too many women going the tamoxifen/zoladex route. I feel like I've had a little "calm" before more "storm"
. I start the zoladex and zometa next week, and have implant exchange surgery on 2/18. One day at a time!1 -
Min and Annice I see you both had a Grade 1 IDC like me and had a mx. My node was only .6mm but that is why I'm having chemo, then they are recommending rads but I want the mx and exchange, which my surgeon says he can do, like you had.
I will also be on tamoxifen and zoladex injections after the chemo and rads / surgery is complete.
xx kk
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Kiwikid - are you thinking about a single or bilateral MX? I didn't have a choice about a MX on the right because my DCIS was multifocal, but I did decide to remove the left at the same time.. I have felt overwhelmed at times with all the decisions that have had to be made, but I realize that they are all just steps in this process that we have to go through. Keep us posted on how you're doing!
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min I also didn't have a choice about MX, as I was multifocal IDC on left. Had a prophy done at the same time on the right - and so far no regrets. Have done Tami for a year, and started Zoladex about 5 months ago. Haven't done Zometa. I'm 51.
Once decisions are made and a treatment plan is in place, it gets easier with time.
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Belinda, your BC was about same as mine! You were diagnosed 3 months before me. I had the double mast. though. Just had reconstruction and am ready to get back into the swing life now! Feeling wonderful.
I'll check out the Celexa info. Thank you!
Talk with you soon,
Kim
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That's really interesting thanks ladies. I do wonder about doing both at once. Did you go against the advice of the pros to have your surgery or did they give you the info and leave it to you? Mine are happy to do the one surgery, but both the surgeon and the RO think radiation is sufficient. They however, do not live in my head!
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My surgeon left the prophylactic decision totally up to me, because statically you're not supposed to be at greater risk to get cancer in the other breast just because you had it one. It was the right decision for me for two reasons - I wanted to lower my risk of getting it in the other breast, and I'm a little OCD about symmetry. I knew I wouldn't be happy with one real breast and one implant. So I felt it was the best decision for me for both reasons. My grandma had a single MX 27 years ago and has never looked back or regretted anything so it's really a personal decision.
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I ditto min's thoughts on BMX. BMX was suggested, but the decision was left entirely up to me. And the thought of having yearly mammos on the one breast was daunting, I'm anxious about tests anyway.
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Ok I was thinking umx but now I'm leaning bmx, I'm only 34 and don't want a life without symmetry and the fear of a new cancer in the other one. Actually, what I'd really like is my old life back, and my hair, but failing that I'll settle for my lowest chance of facing this monster again.
Xx kk0 -
Kiwikid- I was 35 when I was diagnosed last year. My BS went throughout the options of umx of lumpectomy. I knew from the time that I was diagnosed that neither one of those was an option. I told her what I wanted with tears running down my face. She told me ok done! I had a BMX done 5 days later. I ha e never looked back on my decision. You have to make a decision that you will be able to live with. I also did not want to be uneven.I had reconstruction 6 wks ago, they are slowly but surely looking like boobs. Good luck with your decision.
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Hi all,
Just a quick update: My MO called today with my Oncotype DX score. It's 8, which is apparently on the "low end of the low range" (if you consider under 18 to be low, I know some would say that's debatable) -- so I'm going to proceed with radiation and no chemo. My first treatment will be next Wednesday. I hope the SEs will be minimal. Then, it will be on to Tamoxifen.
Annicemd -- thanks so much for recommending "The Reality Slap". I'm about a third of the way through the book and it's really helping me manage my anxiety. I'm also going to start taking yoga/meditation classes. The mental aspect of having BC continues to be a huge challenge for me. I feel like I'm on an emotional rollercoaster. But focusing on the present and appreciating the good aspects of my life really does help ward off the "thought attacks."
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Bump cdsd
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Hi Pam, I am so glad you got the book, it's amazing how thoughts can be destructive, out of proportion with facts and reality. Getting this in context and being equipped to handle the dark thoughts is a great asset in the long term.
8 is a really great oncotype score, one of mine was 8 and it gave me the confidence in my treatment plan to move on and get back to my life!. I hope it's the same for you
Radiation does not usually have any side effect during treatment but you will probably feel tired because of what you have been through over the last few weeks!0 -
Thanks everyone for your help, and chrisrenee, I think I'll be taking a leaf from your book. Thank you for sharing your story, it means so much.
Xx kk0 -
I am new to this discussion board and newly diagnosed, 38 y/o pre-menopausal, IDC. 1.4 cm tumor, grade 1, with 2mm micrometasteses in 1 node. Appreciate all of the posts, so much! I am really unsure of what is best plan for me. Surgeon and primary doc assumed that I would have the whole kit and kaboodle of treatment with my age and some mets in lymph node. So...expected to hear "chemo, rads, tamoxifen" as treatment plan when meeting with MO. Was prepared to hear that and ready to go "balls to the walls" with treatment right off the bat. Ordered a wig and everything! Instead heard "we maybe don't need to do chemo....node is not considered fully positive for mets (though exactly at the cut off for micro mets vs. fully positive node, being 2mm.). You would think I would dance for joy at those words, but instead I panicked! That wasn't the plan I expected, and even though prognosis is very very good, an extra 1 or 2% disease free survival rate suddenly became statistically significant as the patient, whereas it may not if I weren't the one sitting in the chair. MO recommended 2nd opinion to reassure me and get a second set of eyes on my pathology and situation. So relieved and felt very good about the thoroughness of the 2nd opinion at leading medical center. Now waiting for oncotype and BRCA test results to come back. Worried that I will be posed with the same dilemma. What if oncotype is low or intermediate and only gives a small % benefit? What do I do?! I don't know why, but all along I have felt that I want to hit this with all guns and was unsettled by recommendation against chemo. Hormone receptor status is so high, that is why only rads and hormone therapy were suggested. Am I crazy for "wanting" chemo?! I feel like a crazy person for even thinking it when many people do everything to avoid it and I know it can do so much to one's body. Hoping for clarity and less ambiguity when it comes to final recommendations and treatment plan. Tentatively scheduled to meet with doctors beginning of March to get their recommendation. Ugh....why couldn't this be more clear cut and obvious?!
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Just realized I hadn't made diagnosis and such public prior to last post, so here goes. :-)
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Mnmom38 Welcome to the boards, sorry that you're here but you will find lots of support from many women that have traveled this journey before you. Waiting for a treatment plan and making decisions is difficult. And when there are options it can be very tough to decide what to do. Have you had an oncotype dx test? Has your MO discussed ovarian suppression? Once a treatment plan is in place and you make some decisions, it gets much better. Only you can make decision on treatment yourself.
I wish you the very best.
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Thank you, Joyh1109! Waiting for results of oncotype and BRCA tests. Hoping that helps give me more clarity. Did you have oncotype dx? Discussed ovarian suppression along with Tamoxifen therapy following radiation. Chemo is the big question. I have seen some posts from women with similar dx who have had chemo, but it appears most haven't. On the fence right now. Appreciate all the support I see on this message board. It is comforting and validating.
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Mnmom38... You are early in the process. Hopefully the Oncotype DX test will give you clarity and direction. While you are waiting, check out the professionals version of the NCCN guidelines and focus on reading pages 90-100. Having a stage 1, grade 1, tumor gives you many choices. There is no right or wrong treatment. Ultimately, you will come to decide what treatment is best for you. Good luck!
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Mnmom38 Yes, I had the oncotype dx test with low results. For me, this was the determining factor in not having chemo. There was no nodal involvement in my case, however. I would ask to have your diagnosis presented to a tumor board, maybe this will help in the decision making process.
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Mnmom38 - I found a common theme among the MO's I sought opinions from. They all said "you're in a gray zone", meaning that right now there isn't a one-size-fits-all treatment plan for someone who has early stage breast cancer, especially someone who is pre-menopausal. That's because of newer studies/tests/etc. that allow treatment to be more individualized than it was in the past. I found that difficult to digest, as I didn't realized I would be faced with such decisions about my treatment. My oncotype was 16, and I had no node involvement. I ultimately went with the recommendation of tamoxifen plus ovarian suppression because I was highly ER and PR+. I digested all the information, and made the right decision for me. I hope that you are able to do the same, once you have all the pieces you need.
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How have the side effects been with the tamoxifen and ovarian suppression? Appreciate all of the words of wisdom here, thanks!
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Mnmom38 - I just started both in January, so others that have been on them longer might be able to provide better info. So far, my side effects have been minimal - mostly occasional moodiness and occasional hot flashes at night (short in duration). But I get my second zoladex shot on Thursday, and I think it takes a couple of months for that to fully take effect. Everyone seems to have varying degrees of side effects, but I have been told by more than one doctor that exercising helps to minimize side effects.
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Mnmom38 it is so hard during this decision making stage, once you have chosen your treatment route things will feel much better for you. The reality is that your prognosis is excellent. As the others have suggested there are many options and you need to seek out the one that feels right for you. The micromets and your age make things a little trickier but all your other stats so far are very good. Once you have your braca and oncotype you will be in a stronger position to make a final decision on chemo which is the biggest decision for you right now. I am on zoladex and tamoxifen and have been for about 20 months. I am 43 and have 2 young kids and a busy life working full time and honestly I have had no problems with these treatments. Every day I take my tamox gratefully! When I get a hot flash I am happy that it is indicating that my estrogen level is low because I see estrogen as my enemy! A number of studies suggest that the benefit of chemo in younger women's with hormone sensitive BC is its effect on causing ovarian failure, so if you decide against chemo and go for ovarian suppression and tamox remember this is a strong treatment option not a second best. Also chemo is not as effective against grade 1 tumours because they are so slow growing and chemo attacks fast growing cells so hormone treatment may be as effective and also safer. I had the dilemma about chemo too, I really wanted it but all my specialists advised against and my oncotype sealed my decision. Keep us posted about your results and we will all chime in if things are still not clear for you
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I keep wanting to ask this, but am not far enough along in the process (my surgery is Monday): How does menopause happen when you are on tamoxifen, or some other treatment? I'm 45, and sometime I'll be hitting menopause. (My sister said she was 48 when it started for her.) How does this play out, given that I could be on tamox. for 5 or 10 years (my dr. mentioned 10 years at my last appt.)?
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Tamoxifen does not cause menopause, it blocks effects of estrogen and so causes menopause like symptoms. These are reversible on stopping treatment. The GnRH analogues such as zoladex block the the female hormone cycle at the top of the chain in the hypothalamus and this effectively causes a chemical menopause because the hormone changes from the pituitary gland to the ovary are identical to menopause, however again the treatment is reversible on stopping treatment. Natural menopause comes when it feels like it and can occur naturally anytime between early 40s and late 50s but this is of course usually progressive and irreversible. I hope that explains for you Renee
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Renee...Regarding other treatment such as Ovarian Suppression...if you decide to do CHEMICAL ovarian suppression...the question is how are you going to know when to stop doing it, especially if you have a family history of entering menopause in your late 40's? My physician arbitrarily chose 2 years of ovarian suppression and then we began blood tests to determine if I was menopausal. I was monitored for a full year to see if there was an increase in my estrogen hormones. Fortunately, I never had to resume O/S because I officially became menopausal a year later.
Regarding Tamoxifen....If you become menopausal, you will be given many choices. With the new Atlas trial findings, you may now have the choice of staying on Tamoxifen for 5 or 10 years...regardless of your menopausal status. According to the NCCN guidelines, if you began treatment while you were PREmenopausal, the standard of care would be 5 years of Tamoxifen. That guideline may change now with the new Atlas trial's findings. Some physicians are switching their patients who take Tamoxifen and then become menopausal to several years of an AI. When I was diagnosed, I was told to CONSIDER 5 years of Tamoxifen, followed by 5 years of an AI. With Atlas, I will be considering 10 years of Tamoxifen.
Good luck with your active treatment. Please let us know how you are doing!
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