Stage 1, grade 1 and pre-menopausal
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I was 45 and premenopausal when diagnosed with bilateral grade 1 tumors, and no one said anything about me being lucky until the low Oncotype score came back for the larger tumor.
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Did you ladies not have hormone therapies either? I'm wondering because I don't see them in your signature sections.
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I discontinued Tamoxifen within a few months because I couldn't tolerate the side effects (my posts about that are in the Bottle o' Tamoxifen thread). My MO said that I could try ovarian suppression and an AI if I wanted to but that he expected the problems to be just as severe or more so, and because my risk of recurrence is so low he gave his blessing for me to quit. I was very surprised at the side effects, I typically do fine with meds.
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Thank you, Angel. I tried Tamoxifen for 3 years then quit. I tried AI next for 9 months. My MO wants me to continue (Oncotype 11) so I feel curious about others' decision-making. I hope I'm choosing the right one (finger crossed)!
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I'm leaning towards just not doing tamoxifen either... or rads at this point. I'm going to see a Naturopathic Oncologist (who even knew that was thing) to see what he has to say. I'm not a super granola-ish person but I am intrigued anyway.
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I am doing ovarian suppression and an A.I
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Hi - new to this forum -- or any forums.....
I was diagnosed in Sept. -- 1 CM invasive lobular nuclear grade 2 (onco type 13) and another invasive .5cm nuclear grade 1 (oncotype 15). and DCIS nuclear grade 2/3. 10 year history of LCIS. Double mastectomy. I am on Lupron and just starting taking Arimidex --- am 47 and premenopausal....
I am worried about the studies that show the benefits of chemo on the hi-end of the low Oncotype scores (above 11) and asked my Oncologist to do a Mammaprint to make sure I couldn't' benefit and he said he doesn't believe in the test. Does anyone have any suggestions and how much would it help? Don't want to look back and wish I had done chemo. Also, are there any other genetic tests I should have done to figure out any other targeted therapies (for Luminal A, any other tumor markers, etc).
Feel behind on the genomics curve.....Any suggestions would be great. Thank you.
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Has anybody had their early stage tumor tested for a later recurrence - beyond 5 years? MO tells me that it's relatively new test.
Thx
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Thanks for sharing this VR. Good to know for a lot of ladies on this thread
X
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Thank you, VR.
Yes, this is the test that MO mentioned. Excited to think of the possibility of quitting Tamoxifen at five years.
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Hi all, I'm newly diagnosed and reading this tread has been enormously helpful! Thank you to all of you for sharing your journeys! I'm still healing from the rt lumpectomy and node biopsy so i have only met with my oncologist's nurse navigator at this point. I am pre-menopausal, suspect I am in Peri-menopause, my mom entered menopause in her early 50's. I have some questions if anyone can help - Before this diagnosis i had been feeling "off" so over the summer I had my hormones tested (saliva test) and it showed my estrogen was normal but my cortisol and progesterone were low making me estrogen dominant. I am suspecting i was in that state for possibly years looking back now at my symptoms but like many women, I did not take care of myself, working, kids, taking care of ill parents, and then having 5 family members pass away within a 14 month period (including my mom) produced years of heavy stress. I think this all contributed to the hormone imbalance and ultimately the BC.
Here are my questions 1. Is an imbalance in hormones the cause of ER+ and PR+ BC? It's seems like it is. 2. Are there any studies indicating women's' hormone levels prior to a BC diagnoses? 3. If we can simply balance our hormones, will this prevent a recurrence? Are there any studies related to this? 4. Or do we have to take some kind of HRT to get rid of our estrogen altogether (or remove our ovaries)?
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Dear ssimplelife2,
Welcome to the community. We are so glad that you reached out here but so sorry for your diagnosis and all that you have been through. You may want to explore other forums if you do not receive responses here. You can also take a look at our main site for more information. Here is a link to a page on Hormone Receptors. Please stay connected here and keep us posted. The MOds
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Thank you and yes I will look at that. I was hoping annicemd would respond since this is her area of expertise and she always has so much good info. But yes, I may post this in another forum also.
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hi Simplelife, sorry you have had to join us. Glad you found the thread.
You have asked some very searching questions! I will try my best to answer them.... here goes
1. Is an imbalance in hormones the cause of ER+ and PR+ BC?
The cause of ER+ PR+ BC like other forms of BC, is poorly understood. It is most likely multifactorial with contributions from genes and environment. There is no strong suggestion that hormone imbalance is the cause but high estrogen levels over many years from the birth control pill or hormone replacement therapy do increase risk. The hormone imbalance you describe about yourself seem to me, based on the info you have given, to be that you were perimenopausal which can cause estrogen levels to be very high as well as very low, and suffering from adrenal fatigue which is and adrenal imbalance caused by stress. Stress is bad for the immune system but many people suffer from chronic stress and don't get cancer! But of course it may be one ingredient in the complex cancer recipe!
2. Are there any studies indicating women's' hormone levels prior to a BC diagnoses?
I don't know the answer but I think no good evidence to show this, you will always find anecdotes from "Dr Google"
3. If we can simply balance our hormones, will this prevent a recurrence? Are there any studies related to this?
With ER+ breast cancer suppressing estrogen levels helps to reduce risk of recurrence. That is why Tamoxifen, aromatase inhibitors and ovarian suppression are often used. Some of the benefits of chemotherapy in younger women may also relate to the fact that it suppresses ovary function and sometimes triggers early menopause. There are no data looking at any sort of "rebalancing of hormones". However stress is bad for ALL chronic illnesses and cancer is no different and reducing stress is only going to be beneficial.
4. Or do we have to take some kind of HRT to get rid of our estrogen altogether (or remove our ovaries)?
I think I answered this above?
I wish you all the best with your treatment plan
Annicemd
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Thank you Annicemd! Your answers were really helpful, there's so much to understand with this diagnosis. I wish you the best!
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I am just like you!! I found my lump in Feb of 2015(age 41). I went for my yearly mammogram, they saw nothing so I ignored it till August. At that point I asked for an ultrasound and ended up with a biopsy that same day. six days later on 9-1-2015, I found out I had BC. it ended up being STAGE I, IDC lo grade, 1 CM. no lymph nodes involved. I have wondered the same thing, I am still having regular periods, Im alos on Tamoxifen, Oncotype score or 14.
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I was diagnosed in November, I am just 33. I have seen so many doctors and they all said I was lucky to have this kind of cancer at my age... I get confused thinking why do I have this cancer? Would I get a recurrence with a more aggressive cancer? My tumor was tiny only 0.3 cm...sometimes I wonder: What if I have found my BC after 10 years or later at a size of maybe 2 cm, it then wouldn't look so atypical. Currently I feel really strange for my age to have this cancer
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hi everyone,
I just finished reading all posts! I wanted to make sure I was well informed before asking stupid things. I was diagnosed in November, only 33 years old.
my tumor was really small 3 mm. The final report says: NST but with predominantly tubular components. Is it then tubular? I asked one oncologist and she said..it means the tumor is not that malignant..
I finished my rads and I am trying to enjoy short vacation with my husband but I am so worried about a recurrence or getting cancer in the other breast.. My doctors always tell me I have very good prognosis but I am worried because I am only 33..and my cancer is ER/PR+. I am now only taking tamoxifen, would it be enough??? Any experience? What else I can do? I started a diet that I am willing to keep my whole file, I exercise regularly...i don't smoke and drink alcohol and I am willing to reduce my stress...i am a very stressed person.
I used BC pills for 15 years and I think this played an important role. I am of course not using this anymore.
I worry that the radiation will cause my another cancer in some years...i begged for another treatment but I am currently in Germany and my doctors said mastectomy was extreme and unnecessary
any advice? Any help?
tganks
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Hi Valentina,
Congrats on finishing rads. I was pretty tired at the end of rads, and then went through a period of severe insomnia for about 6 weeks (practically no sleep at all, day after day, for 6 weeks. gah! I thought it was due to tamox but realistically I think it was everything catching up to me). I am also a skeptical person, distrusting when my docs said I had a great prognosis. But I think they are being honest, based on what they have seen. And here I am 7 years later, so they couldn't have been bluffing me too much. lol. Anyway, in terms of things to do, I chose to stop drinking alcohol, I make more of an effort to eat only organic, and limit my exposure to chemicals (got rid of the plastic tuperware for glass, use a ceramic drip coffee maker vs. the plastic Mr Coffee, bought Green Pan cookware, use health body care and household cleaning products etc). I have no idea if any of these things caused my cancer but I figure, better safe than sorry. I did it little by little and realistically, most of them were upgrades (glass leftover containers are much nicer than plastic). In terms of radiation, I think it's a good idea for everyone to reduce excess exposure. I avoid excess medical scans if not needed. (my ear doc wanted to do a brain CT to look for scar tissue in my ear and I said "no thanks" since it wouldn't really change what we were doing anyway). I choose to opt-out of the back-scatter machines at the airport. Also, since being on a plane increases our exposure to the sun's radiation, I take antioxidant vitamins when I fly. And I fly red-eyes more often (no sun == no sun's radiation). Realistically, I take the red-eyes more for the schedule/traffic convenience but it's nice to reduce the radiation exposure. This might sound overwhelming. I know someone who is a 35+ year BC survivor (DX'd at 31, ages ago when our Tx options were less; she had an MX and was done). She doesn't make any special effort, really, and she's still doing great.
BTW, did you get tested for the BRCA gene? It's less $ than it used to be.
take care of yourself. You've been through a lot. It's a big deal, especially when you are young. I'll send you good thoughts.
Patti
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hi Patti,
thank you so much for your messages.
I am having the BRCA test in 2 weeks.
many greetings from G
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I am stage 1 , grade 1, ki67 4% , aged 37. No chemo, radiation, Tamoxifen, lupron
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Hi Prahan, there are many women on this site with similar stats. My diagnosis was 2011. Life gets back to normal in time! Your treatment track is good but tough to be in chemical menopause at 37. There is lots of good support and advice on these pages. X
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I was Stage 1, grade 1 and pre-menopausal at 48. My onc kept going on about how young I was and was so upset that I was under 50. I mean, 48 is basically 50, I can't see why that was such a thing.
Everyone during my journey actually went on and on about how young I was and my husband said they were just judging by how I looked. The day of my first surgery the nurse was going on and on about how young I was - until I said "I'm not so young, I'm 48". The one nice thing that happened to me - everyone thought I looked much younger than 48. I had a lot of conversations about skincare with nurses and doctors during the whole ordeal which kind of took my mind off things a bit. Before that though, I was wishing they would stop mentioning the young thing b/c it was freaking me out!
But I see here that plenty of women in their 40s deal with BC and I know others in real life. My onc ordered genetic testing too which came back negative. I am Ashkenazi Jewish so I was afraid but nothing. My Oncotype score was 10 and I am taking Tamoxifen and doing pretty well on it after a rough start.
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mitziandbubba congratulations on looking so young! I was 41 when I had my mastectomy, it was the day before my 42nd birthday. Noone said I looked young!!!! 🤪 That was 8years ago. Hope all goes well, your stats are good!
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Thank you Annicemd! A silver lining I guess. My stats are very good, I can't believe it given what they originally expected to find.
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Thanks you Annicemd. I am waiting for the 6 month check up scheduled Jan,. Don't know what kind of tests will be done scared a lot
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Praham don’t be scared. It will be a straight forward check. They will check you are tolerating your meds and do simple exam and questions. Maybe some blood tests. If you have been fine it is very unlikely that you will have any surprises.
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Thank you for your kind words Annicemd.you completed 8 years it seems. How is your quality of life?. NED all these years?
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it’s all good 😊 NED so far! We must all enjoy the time we have 👌🏻
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