Stage 1, grade 1 and pre-menopausal
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Happy new year everyone!
Let's hope it's a happy and healthy year for all of us
Annicemdxx0 -
Annice...I'm NOT "hoping" it's a happy and healthy new year for all of us. I'M BANKING ON IT!
Happy New Year to all of my dear friends here and their loved ones!
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Happy New Year!
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Wishing everybody a Healthy and Happy 2013!
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VR you are quite right!
It is going to be a vintage year 😄0 -
Hi all,
Reading this discussion thread has been so informative and helpful! It’s great to hear from others in situations very similar to mine (stage 1, grade 1, pre-menopausal).
I am 46 and was diagnosed about a month ago (see my signature for details). I had lumpectomy surgery on 12/20/12, and it looks like I’ll be doing radiation and Tamoxifen (waiting to get my Oncotype score, to confirm no chemo). I have no idea how I ended up being a cancer patient (I’m sure everyone can relate!), since I’ve always been healthy. But I’m thinking that the fact that my mother had Stage 0 BC (DCIS) at age 43 had something to do with it. That, and perhaps taking birth control pills for years.
Does anyone have any good advice for how to deal with all of this from a mental/emotional perspective? I have a lot of confidence in my medical team, but am having a really hard time controlling my anxiety and sadness. I would prefer not to take antidepressants, if possible. Are there any good books or articles that would help? Meditation? Other relaxation techniques? I have a great support network of husband/family/friends, but with the exception of one friend who faced Stage 1 five years ago, no one can really relate to my situation -- which is why I’m so glad I found this website/discussion.
I know I should be feeling lucky and thankful that my BC was caught so early, that it’s not aggressive, it hasn’t spread to my nodes, the prognosis is good, etc. -- but I’m finding it difficult to maintain that mindset. I’m not recovering from surgery as quickly as I thought I would, and am really worried about the side effects of my upcoming treatments. I feel like I’ve aged 10 years in just a few short weeks.
Any words of wisdom? Thank you so much!
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Pam. I'm sorry to hear about your diagnosis. Glad you found us. Yessirreee...We are the "young" women with an "older" woman's type of breast cancer. And I'm getting to be one of the "senior" members here because I've FINALLY crossed over into being postmenopausal!
You are so early in your journey. It's common to be emotionally upset. You are in the middle of active treatment. It's really going to take some time for your emotions to find their new normal. I'm not good with recommending books or ideas on how to find peace. Every single day, when I pop my Tamoxifen pill I am reminded that I am a breast cancer survivor. It gets a little easier with every passing day. I've always been healthy too....that is, in between needing life-saving operations TWICE, in addition to a dozen other surgeries. I guess I take everything in stride. I figure if you look around, and take a really good look at the peope you know, you'll notice that EVERYONE has SOMETHING. And if they don't, well, it's just not their time...yet. I always marvel at how every single person, with all their "issues" gets through every single day. It's really a miracle! I guess something could be said about how the beauty of time is the best medicine because it ultimately gives us back our strength. ...and if you're not feeling better down the road, I urge you to seek counseling. No one has to suffer. I wish you well! Welcome!
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Hi Pam so sorry you are here but glad you have found us now! I would recommend a great book called "the reality slap" by Russ Harris. It is a mindfulness based book which helps to deal with the painful emotions and thoughts that frequently make coping with something like this so hard. I hope it helps you. Also hoping for a good oncotype result for you
Xx0 -
So glad you found us! I am 45. I had TONS of anxiety during active treatment. You can't escape thinking about it when there is one doctor appointment after another. It has gotten easier since that has stopped. I feel so blessed to have this "older ladies" type of cancer and having found this place to share!
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Thanks so much voraciousreader, Annicemd, and Belinda977. It really helps to hear that my feelings are typical/normal. And it makes total sense that things will get easier when I'm out of the "active treatment" phase. In the meantime, I'll just have to take it one day at a time I guess. I do realize that most people out there are dealing with some kind of challenge. I need to keep reminding myself of that, and also keep focusing on the positives.
I'm going to order "The Reality Slap" tonight -- it sounds perfect. And I will also consider counseling if I don't feel better/stronger over time.
My friend who also had Stage One told me that now that she's almost 5 years out from her diagnosis, she hardly thinks about cancer anymore -- except when she goes in for her checkups. And she says I'll get there too -- although I find that hard to believe. I feel like this is something I'll be thinking about every day for the rest of my life.
Another question for the group: are there any other specific topics on this discussion board that you think I would find particularly helpful, given where I'm at in the process? I've only been part of this community for a few days, but I'm already finding it invaluable.
Thank you!
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Hi ladies
Just an update from me, I started ac chemo on 30 December based on ki67 result of 18%. I've met with the surgeon and he has offered to go back and look for more adh/dcis at the margin of the shaving, or he can do a nipple sparing mastectomy with tissue expanders.
The mx would put my local recurrence rate at 3%. No surgery and 25 rounds of radiation would put local recurrence at 5%. The difference seems small but I see it as 1 in 33 or 1 in 20. I will need to make this decision before the end of chemo but I'm leaning towards the mastectomy.
I'm going to need tamoxifen and the injections to stop ovulation very month too. Oh the joys of being 34 go on and on. It's really not been my best year, but I'm so glad I found it at 34 and not 35!
Xx kk0 -
Hi Kiwi it's totally your decision but as you are so young, i would say the lower you can get your recurrence stats the better. You have a long life ahead of you! Also if you can avoid rads that would be good as they do cause late effects years later, not so much of a problem in older ladies but more of a concern the younger you are. NSMX is a really great option if possible.
Keep us updated, it's tough making the decisions but the outcomes are very good either way0 -
Annice, what types of things following rads do we need be worried about? Heart damage? Thanks.
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Regarding radiation, here's the latest news that came out of the 2012 San Antonio Breast Cancer Symposium:
http://www.sabcs.org/PressReleases/Documents/2012/8f5936de321e2688.pdf
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Hi, Happy New Year, I also worry about my BC everyday. It's unreal how sensitive I've become. I went from a tough cookie to mush. Really need to snap out of this. Love to all of you. LorAll
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i don't exactly fit your category, but i am sad a lot from this diagnosis. my doctor doesn't recommend much even though she is very experienced and thought highly of in nation and breast meetings and it is the first time i am hearing about most of this different treatments
how can i get the test to see if tamoxifen works for me? is it over the counter? do i have to request from doctor? can someone explain process to me. im scared maybe it has not been working for me all of this time
i have no symptomsfor zometa, i curious what it is and why not i can get it
my medical team never recommend ovarian suppression or removal. im still premenopausal, perimenopausal. i feel like not getting treatment advice because i am not young and see many women who are young with my same disease profile getting treated way different than how i am and i don't understand because don't the disease operate the same. shouldn't matter if you are 35 premenopausal or 53 premenopausal if your disease has all same characteristics. should it if it all has to do with cells? i feel i am in a cloud drifting on my own and it is scary and just because i am older does not mean i don't have obligation and my kids counting on me. i believe i am young still and want to be treated like there are many years ahead but it seems like im being treated like im have a few years left.
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http://www.medpagetoday.com/MeetingCoverage/SABCS/30136
Lucky...I posted this link on another thread that you posted on.
First off....YOU DO BELONG HERE...and welcome! You have lots of good questions and I think you deserve answers from your team. By all means, if you have questions regarding Zometa, ovarian suppression and the CYP2D6 test (that's the one with all the controversy that tells you how well you metabolize Tamoxifen), you need to speak up. If you are unhappy with what you hear, then perhaps you should get other opinions. Being Stage 1, Grade 1 and premenopausal gives you MANY treatment options. Your team should go over all of them with you.
Furthermore, just want to add, you don't need to have symptoms to know whether or not Tamoxifen is working. Glad to hear that so far you haven't had any side effects. I would also recommend a baseline transvaginal ultrasound if you haven't had one already.
And regarding your feelings about being treated differently than someone who is younger. Keep in mind everyone's situation is unique. Everyone needs to explore the risks and benefits of treatment as it relates to their situation. For example, choosing ovarian suppression might be harder for someone younger because it comes with increased risk of heart disease and bone loss. I was 53 at diagnosis and felt like you are feeling right now...that our younger sisters were getting "better" treatment. But once you learn more about the disease, you will see that everyone's situation is NOT the same. Regardless, you should be told about all of the current trials and then decide how they relate to your situation and then be given the choice of treatment. You might also like to go to the NCCN website and read the breast cancer treatment guidelines. You need to register at the site, but it takes only a few minutes to register.
I just want to add that I felt better that the doctors weren't giving me as much of their time as they were to other patients. That made me feel like I had less to worry about than most others. Nonetheless, I was given enough information about MY situation to make an informed decision. And you deserve the same.
Speak to your team! And keep in touch and let us know how you're doing....
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Belinda, yes basically mainly risk to heart and after many years second tumours can rarely occur. Here is a summary of an article on the subject. More data relating to Rads for Hodgkinson disease treatment, not sure if doses for this are higher than that given for breast cancer. I chose to avoid XRT and had mastectomy, I am young
Sorry for delayed reply, been busy!
Breast Dis. 2005-2006;23:53-65.
Late effects of breast radiotherapy in young women.
Raj KA, Marks LB, Prosnitz RG.
Source
Department of Radiation Oncology, Duke University Medical Center, Durham, NC 27710, USA. katelyn.raj@duke.edu
Abstract
Radiotherapy (RT) to the breast or chest wall of young women is associated with long-term cardiotoxicity and an increased risk of secondary breast cancers. As many patients with early stage breast cancer and Hodgkin's disease are cured of their disease, there is significant concern regarding the long term risks of therapy. Older RT techniques for treating the breast/chest wall and draining lymph nodes for breast cancer resulted in a relatively high dose being delivered to a substantial volume of heart, and convincing evidence exists of excess cardiovascular morbidity and mortality in patients treated with these techniques. While modern RT techniques have reduced radiation exposure to the heart, they have not eliminated it. Many large studies of Hodgkin's disease survivors have demonstrated a clear risk of secondary breast cancer development after mantle RT for Hodgkin's disease. The risk of developing breast cancer after mantle RT appears to be related to age at time of irradiation, dose delivered to the breast tissue, and whether or not chemotherapy is incorporated into the overall treatment plan. In this article we review late cardiac complications associated with tangential breast RT and the risk of developing a secondary breast cancer after mantle RT for Hodgkin's disease.
PMID: 16823167 [PubMed - indexed for MEDLINE]
Publication Types, MeSH Terms
LinkOut - more resources0 -
Lucky star, I reiterate what VR has said. Do question your doctors and if you are too afraid at appointments and can't think of what to ask write your questions down and show them to your team. Treatment needs to be individualised and not everyone needs "aggressive treatment". Sometimes this can do more harm than good. But you need to be confident about your treatment plan and understand it so ask away
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I'm 51 and I to would like to know if Tamoxifen will work for me. Do we have to talk to our MO about the test for
CYP2D6......
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Lorall...If you look at the NCCN 2012 breast cancer treatment guidelines, they do NOT recommend doing the CYP2D6 test to see what kind of metabolizer one is of tamoxifen. However, a few weeks ago, some research seem to indicate that patients should be tested. I would recommend that you discuss it with your MO. Please let us know what they recommend.
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Thanks AnniceMD. I needed it plain language! I wonder if echocardiograms would detect damage. I get one of those every year for high blood pressure.
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I had a meeting with the RO today. He is recommending radiation over mx. I asked if he would do the same for his wife or daughter, he said yes, unless it was a grade 3 or a large tumour. Grade 3 being aggressive.... BUT THEN he said how surprised they were at my grade 1 being ki67 of 18% and said there are only 5% of grade ones which are aggressive like that. He said ki67 indicated likelihood of travelling, hence chemo. Anyway, I'm confused about him not recommending mx as its not aggressive, but me getting chemo as it is. Hmmm
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Kiwi... The lumectomy withradiation or a mastectomy will prevent local recurrence. The other treatments, including chemo are to prevent distant recurrence (mets). Many women don't have an option between doing a lumpectomy or a mastectomy due to the size of their tumor or the size of one's breast. Either choice is for local control and they both have the same prognosis going forward. The chemo and other treatments discussed are to prevent systemic recurrence.
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Hi ladies, I have a question about antidepressants and tamoxifen. I currently take Zoloft (taken 50mg for PMS) for several years. Now I am learning that it interferes w the tamoxifen. My MO recommended Effexor instead. But after reading about it I am not so sure. Any tips suggestions on others safe to take. Right now I am weening off the Zoloft and Am going to see how it all goes without antidepressants. So far tamoxifen hasn't produced Any side effects for me.
Let me know your thoughts......
😃0 -
My doc suggested the same med as you show above. However, the one I am on...Celexa is also Ok to take with tamoxifen. It has really helped with the anxiety.
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Thanks VR
I understand the reason for the different treatments, what I don't understand is that my RO would recommend a mx for a grade 3 but not for a grade 1 with high ki67. Surely if grade 3 is aggressive and warrants a mx so to does a ki67 aggressive enough to warrant chemo? Also I had two other areas of small, 4mm, indeterminate pre cancer cells in my breast tissue removed during surgery. They were AT the margin, hence my wish for mx, or clearer answers!
Xx kk0 -
I am joining this thread a bit late, but I have been in a predicament for the last couple of months trying to decide how to proceed with my treatment. I am 40, pre-menopausal, and I had a BMX in October for stage I cancer (DCIS and IDC). It was highly receptive to estrogen, so I started tamoxifen last week. I knew I would have to take that, but I saw four oncologists and basically got 3 different treatment recommendations. It has been hard being in a "gray area" as they call it, with respect to treatment. All but one of them said that chemo would not benefit me (my oncotype was 16 also), and the MO at the breast cancer center that I went to recommended an aggressive hormonal approach because of my young age. In the end, I decided to go with the treatment combination of tamoxifen/zoladex/zometa. I will have my first injection and infusion of the Zoladex and Zometa next week. I wish these decisions were easier!
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Kiwi... Not sure why the RO is involved in the surgical decision. Mastectomy and lumpectomy with radiation have similar mortality rates and neither is based, to my understanding on the grade. Perhaps you would get better info from the MO and surgeon to help in your decision. Good luck.
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He is involved only cos I asked him what he would say to his daughter! He called me today to say he'd spoken to the surgeon and the surgeon agrees I should have the radiation, but the surgeon is also happy to do the surgery if I wish, or a wider excisionfor clear margins. The MO I thought would only talk chemo, he said the rad vs mx decision was a discussion for the RO and surgeon, but I can ask him again in my post chemo appt on Monday. I'm also going to ask him how I get a second opinion about chemo, as I would like to follow my AC with taxol but he thinks its unnecessary.
Oh so many decisions to make
Xx k0
