Jan 24, 2020 06:58PM voraciousreader wrote:
birthdaygirl....since your mother also has had bc...make sure they do genetic testing to see if you are BRCA carrier...very important
Posted on: Aug 23, 2011 06:25AM - edited Jun 12, 2012 06:18PM by Annicemd
It has struck me that most grade 1, stage 1 sisters seem to be post-menopausal (aka low estrogen) and younger women seem to be more often stage 2/grade 2. I am 42, recently diagnosed ER positive, still full of estrogen and becoming a little paranoid that there is something different about me or my cancer! I am not having chemo as i dont qualify for it. Low oncoDX score etc. On tamoxifen but am a little worried that my long term outcome may be worse because am am in no-mans land!! Are there any sisters out there in similar situation??***************************************************************************************************
May 2012 Decided to update this post as your responses have shown me that there are many of us who started out premenopausal with stage 1 grade 1 disease! What has become evident is that the choices for treatment can be tricky for us. Dilemmas include whether or not to use ovarian suppression or ooph (the definitive study - the SOFT trial will start to publish results hopefully around winter 2013), whether to do chemox if oncotype is intermediate (there is a study looking at this -The TAILORx but results are years off, whether adding zometa to treatment helps reduce recurrence (data remain somewhat conflicting although there appears to be a benefit for women over 40 years provided they are also treated with ovarian suppression), whether ovarian suppression alone or in combination with AI is a good alternative to tamoxifen for those of us who can't take/tolerate tamoxifen (TEXT trial results anticipated with SOFT results) and does Cyp2d6 status matter? So if you are stage 1, grade 1 and diagnosed when you were pre-menopausal you are definitely not alone. There is not a "one size fits all" answer to how we should be treated but hearing the treatment routes others have chosen does help with decision making... and optimism, there are 20 year survivors posting here! >
Posts 1651 - 1680 (1,691 total)
Jan 24, 2020 06:58PM voraciousreader wrote:
birthdaygirl....since your mother also has had bc...make sure they do genetic testing to see if you are BRCA carrier...very important
Jan 24, 2020 08:03PM Badluckbdaygirl wrote:
voraciousreader, that is actually one my BS did from the get go. My paternal grandmother had it also, albeit both post menopausal. I did the one that does around 20 or so mutations (I think in California). I was negative for all of them thankfully. I still believe there is probably something still genetic there. I see your hormone percentages are close to mine. I was er 98%, pr 60% and her2-. I think the more information the better😄
Jan 25, 2020 10:01AM voraciousreader wrote:
birthdaygirl....I agree with you! As they continue to map out the genes, I think they will, eventually, find more connections. There is so much more that we don’t know than what we do know.....
keep us posted
Jan 25, 2020 06:41PM Badluckbdaygirl wrote:
It’s all so overwhelming and I definitely think there’s so much we don’t know.
Jan 26, 2020 04:52PM GC6 wrote:
I was diagnosed with intraductal breast cancer. The tumor and lymph nodes were removed. Has anyone taken exemestane and goserelin instead of tamoxifen? This is my second opinion. I understand it is supposed to suppress estrogen but I don't know the success rate. HELP
Jan 26, 2020 05:17PM Annicemd wrote:
In 2014, two studies, the TEXT (Tamoxifen and Exemestane Trial) and the SOFT (Suppression of Ovarian Function Trial) studies, found that the aromatase inhibitor Aromasin along with ovarian suppression reduces recurrence risk more than tamoxifen in premenopausal women diagnosed with early-stage, hormone-receptor-positive, HER2-negative disease. So younger premenopausal women could take Aromasin as their hormonal therapy as long as their ovarian function also was suppressed.
The SOFT study also found that 5 years of tamoxifen plus ovarian suppression offered better disease-free survival than 5 years of tamoxifen alone.
Ovarian suppression with either aromatase inhibitors or tamoxifen both get very good results so it is useful to consider side effect profiles of AIs versus tamoxifen as they are very different and some people will have a preference.
Feb 6, 2020 03:55AM - edited Feb 6, 2020 08:11AM by Prahan
Dear Annicimed, may i know how long you took Lupron / zoladax shot?
Feb 6, 2020 07:36AM Belinda977 wrote:
Greetings! It's nice to see people still posting here. I am NOT trying to scare anyone but I wanted to share what happened to me to ensure you are vigilant with your aftercare. The stats that they don't share with us is that we have an increased risk of a new, primary cancer (unrelated to your first) in your healthy breast. Thankfully, it was found very, very early but the risk is there. So, if you have had a lumpectomy, keep up with those mammograms.
This board was so helpful for me both times!!!! So supportive here
Feb 6, 2020 01:18PM Badluckbdaygirl wrote:
I finally met with MO and was prepared to get mad and demand the Oncotype test since my BS said at a meeting that she would not be ordering one even though i qualified. She walked in the room when I met her and said, “I think we should do this test called an Oncotype.” What?? I am happy, but now I have to wait a few more weeks. She doesn’t think this delay in tamoxifen is a big deal at all given my diagnosis. So strange😂.
She did say no matter what, her recommendation will almost 100% just be hormone therapy. It seemed to be simply for more information. I mentioned ovarian suppression and she seemed to think if my Oncotype came back higher than she thinks, that it will help in regards to that. I really liked her, but maybe she had a change of heart. I just hate waiting.
Belinda, are you referring to BMX as opposed to lumpectomies? I have to say I agree with you. It seems as though doctors start by talking about lumpectomies obviously because it’s a simpler procedure and does have the same statistics as BMX for that particular cancer. I feel it’s strange that they don’t tell you that mastectomies reduce your chance of another primary in that breast or in the other. I asked my BS and he agreed that it’s not 100%, but someone like me it greatly reduced risk in my crazy dense breasts. I’m not sure he would have told me had I not asked. I see so many women on these sites have more than one lumpectomyover the years only to have mastectomies down the road. All that being said, age, density, etc come to play. My mother had a lumpectomy and is doing great six years out with no issues and her recovery time was so much quicker.
Prahan I would love to know too!
Feb 6, 2020 01:25PM Annicemd wrote:
Belinda, sorry to hear you had another one. It is always a risk, if you still have breast tissue. I have my mammo’s every year and intermittent ultrasound if I find anything concerning. I am also sill on tamoxifen. You are right you can’t be too vigilant! X
Feb 6, 2020 04:57PM voraciousreader wrote:
belinda...sorry to hear about your recent new primary. Good to remind everyone. My radiologist told me at my most recent visit that, at my age, now 63, I am at the sweet spot age for a new primary so he is now recommending more frequent imaging for the next few years. Translation? I am going to be having annual MRIs in addition to my mammos and sonos...
Feb 15, 2020 12:35PM - edited Feb 15, 2020 12:43PM by Renschwa
I was just diagnosed in December ( IDC left, 11mm, negative lymph nodes, E& P positive, grade 1, stage 1) just before turning 45 and just had lumpectomy /sentinel biopsy Jan. 27. My oncotype came back 20 This week and I have been a mess since. I am sure they will recommend chemo but I really don't want it at all possible. My docs (surgeon & Rad) up until now had doubted I would need chemo so I just wasn't prepared for the oncotype news. Of course I am in the intermediate range, just my luck. At a 20 from what I read chemo will offer somewhere b/w 2 & 7 percent benefit. Trying to wrap my head around what that means and is it worth it? But I realize I am still lucky to have caught this early & oncotype could be worse. I keep telling myself that.
I've also been reading about ovary removal and wonder if I could benefit from it. At my age I don't really need them anymore. I see MO number 1 on Monday, Radiation Oncologist on Friday, 2nd MO on March 4. I think I'll feel better once I have a plan .
I am curious what the other intermediate oncotype, mid-40s ladies chose to do out there? One thing I notice reading around here is how many Ladies in general have had chemo and it still came back.
I just feel like I am in the strange odd category of not really young but yet young for BC, & definitely peri-menopausal which seems to complicate things maybe. I don't know. Just feeling confused and overwhelmed right now. Thanks for listening ladies!
Feb 15, 2020 03:52PM Belinda977 wrote:
Renschwa, I was Oncotype 19 and did not have chemo. I was 99% ER/PR+ So you might not have chemo. Was your Ki67 number low (rate of replication). My oncologist indicated that the hormone therapy was much more beneficial for me than chemo.
Thanks for the comments ladies! I wish they explain the whole risk of he second primary cancer a little more thoroughly. The lumpectomy was easier physical healing than the double mastectomy with reconstruction. However, the emotional toll of the second diagnosis was bad. Getting better everyday though!!!
Feb 15, 2020 05:42PM Annicemd wrote:Renschwa Renschwa you must be feeling so vulnerable. But the right treatment path for you will become clear soon and your stats are great. It’s always tough to have borderline results but with your stats hormone treatment with chemical menopause is definitely a good alternative to chemo. Ovary removal is not necessary. Hormone therapy is not an easy option but has definite advantages and I think your Mo/onc will favour that option. Recurrence risk is very low. As Belinda points out, new primary is a risk for all of us without double mastectomy but that is a tough option too! You will not feel at ease until you have a definite plan but it will work out. All the best xxx
Apr 15, 2020 11:55PM Prahan wrote:
Completed one year with ups and downs. Looking beyond to move away from this nightmare
Jul 7, 2020 09:42AM Ileepak wrote:
So glad to see you are doing well after all these years!!! It seems like you did everything right.
I was diagnosed December 2018 . . . the day after Christmas . . . I was planning on celebrating with my two daughters that day because older daughter was working in a mental health facility, with adolescents, while studying for her masters in that field and she did not want to leave her patients alone on Christmas day. So surprise, I had to tell my girls that day . . . they asked me to be forthcoming with them and not to hide anything and I didn't. They broke down and cried . . . that was one of the hardest moments in my life . . . I can still hear my youngest one sobbing . . she was just 19 at the time and just beginning her college years . .
I was diagnosed with invasive ductal carcinoma with tubular features . . . tumor size 0.7 cm . . . grade 1 . . no lymph nodes . . . 2.6 mm HER2 positive . . . Estrogen/Progesterone positive. I had a lumpectomy with radiation at Sloan Kettering February 2019 . . . no chemo since the HER2 was such a small percentage. And I was supposed to follow up with 5 years of tamoxifin.
I am still struggling with taking Tamoxifin again. The side effects were brutal for me, and I am not a complainer . . . I usually suck it up and keep my mouth shut. I had everything from constipation . . . leg pain waking me up at night . . . to my hair falling out in droves and all the in-betweens . . . it became very hard for me to function . . . I work in a hospital with patients every day . . . I have to be able to do my job and do it well. I stopped taking it last September after being on it for about 5 months . . . now I struggle with the worry of a recurrence. My oncologist suggested I take half the dose from 20 to 10 . . . but I have been dragging my feet . . . because I am sure that I will have the same side effects? I have been taking Rosemary extract and looking into other herbs? Although, working in the medical field, I know the important of medicine . . . and I feel like I am just grasping at straws. I am 52 . . .premenopausal . . . was always in good shape . . . . I don't drink or smoke . . . no family history . . . I too think that the birth control pills had something to do with my cancer as well? I keep hearing my grown daughters begging me to take the Tamoxifin . . . . they just want me to live . . . my youngest said "I don't care if you are bald forever . . . I just want you here". The struggle is real lol!
God bless you and all the women on this forum!
Jul 7, 2020 10:02AM Annicemd wrote:
lleepak it is hard if you have intolerable side effects :(
Quality of life is important and you have very early stage disease. It is an individual decision re medication and you have tried to take it. It may be worth trying a tiny dose again to see if you tolerate it as a lower dose may not cause problems. But if you can't take it you can focus on lifestyle measures which definitely reduce risk such as regular exercise, lowering your stress, maintaining a healthy diet and keeping off excess weight. It sounds like you are doing all those things already. Decide on your management plan and then try not to worry and get on with enjoying your life :)
Jul 7, 2020 10:42AM Ileepak wrote:
Thank you for your reply . . . I appreciate all input so much!
Your children were young . . . I remember thinking well Thank God I have mine raised . . . onto to college and on their way . . . but I didn't realize they still needed their mom. Your story and so many others bring me hope . . . I am so grateful for this post that you started so many years ago!
Thank you again and God Bless!
Jul 25, 2020 10:00AM Ileepak wrote:
I would like to thank all of you for sharing your experiences. As you can see from my previous posts, I had invasive ductal carcinoma with tubular features . . . tumor size was 0.7 cm . . grade 1 . . . estrogen and progesterone positive . . . nothing in the lymph nodes . . . Thank God. HER2 was 2.6 millimeters so since it was such a small amount, my MO opted for no chemo . . . . I had a left lumpectomy February 1, 2019 with radiation and then they wanted me to do five years of tamoxifen. After 5 months, I could not tolerate the tamoxifen anymore . . . it worries me . . . they have been watching my right breast since I was diagnosed. Now they have me coming every 6 months for a mammo/sono . . . the last time they brought me back in to repeat the mammo and sono . . . . it freaked me out. I have my 6 month visit this August 4th and I am extremely anxious and worried . . . I usually don't give it a second thought until the day of but for some reason I am freaking out a little . . . I have been out of work with rotator cuff surgery and schedule to go back August 17th . . . maybe I just have too much time on my hands. I am starting in a new position in the hospital in Cardiology and I keep thinking . . . they have been waiting for me what happens if I get a bad review August 4th . . . I just want to continue on with my life and I feel like I am always waiting for the other shoe to drop. I fell on ice going to work back in December and tore my rotator cuff and bicep tendon . . . continued working because the x-ray came back with nothing broken so I thought it was a contusion . . . I finally had surgery and my husband said "well everything comes in threes" . . . I thought "oh no" . . . I'm Irish so I am superstitious lol! I feel like was I hit 50 years old, everything hit me at once . . . . I was always healthy . . . do not drink or smoke?
Please say a prayer for me ladies and I will for all of you . . . for anyone out there who is religious, pray to Father Salonis, a Saint known for healing. Not that I am all that religious but I do believe there are those looking out for us and taking care of us.
Jul 25, 2020 10:19AM Annicemd wrote:
Hi Eileen, I have a strong feeling that you are going to be fine on 4th August. Try not to overthink it. There are no rewards for worrying about what might happen. If something happens you can take a view then, but it probably won’t!
Aug 5, 2020 08:58AM Ileepak wrote:
Dear Annicemd and all of you ladies,
FYI . . . I got a clean bill of health for the next six months! Thank the Good Lord and Thank you Ladies for your advice and support!
I also wanted to let you know that I met with one of my Sloan doctors who told me to stop taking DIM . . . "in layman's terms, he basically said not to play with anything that deals with estrogen . . . not enough studies to show if it is beneficial or more harmful" . . . I just wanted to pass that along because I have been looking into more natural avenues since I am not taking the Tamoxifen anymore. He basically told me to focus more on my diet than taking supplements.
Sep 2, 2020 12:51AM Ladyc2020 wrote:
hello everyone, I read a number of the pages in this thread but did not get through them all.
I am 44, grade 1, ER/PR + 99% HER 2-.
Waiting on surgery once yesterday’s biopsy result is know .
My MO started me on Tamoxifen as he wasn’t comfortable to do nothing, and I felt this was a good option. He said it’s more common in Europe to use tamoxifen before surgery. I’m in the US.
It’s possibly multifocal IDC, May know results tomorrow.
Annie - I saw you had multifocal, can you tell me a little more? My tumor is 11mm and they found 2 more spots 5mm each, bit during MRI assisted biopsy yesterday, could only find one of the spots. The other 5mm seemed to have gone, or at least they couldn’t find it.
Sep 2, 2020 11:00PM Ladyc2020 wrote:
update from above post - Monday’sbiopsy came back negative, super relieved. mammaprint is low risk and chemo not recommended. Feeling very grateful.
Sep 2, 2020 11:11PM MinusTwo wrote:
Sep 4, 2020 12:22AM Ladyc2020 wrote:
minus - thank you, sending you 💕💕
Robin - thank you, how are you recovering from your surgery?💕💕
Sep 4, 2020 11:06AM robinorbit wrote:
The first few several days after surgery were easy. Since about a week out I’ve had a bit of aching and stinging pain in the underarm and breast, but not at the incisions themselves. Tylenol does nothing for that pain. I ice every night and whenever I get a chance. I returned to work the Monday after my Friday surgery, and am able to do chores and yardwork. I stay busy and try to ignore the pain mostly. :
Sep 7, 2020 04:26PM Ladyc2020 wrote:
robin- I hope the pain is lessening for you? I am really hoping to have surgery this week( they will call me tomorrow) and start working Oct 3rd.... I am a wedding Photographer and usually wear 2 cameras across my chest - 1 on each side. Definitely may need to rethink the left side camera for a little while I’m thinking.