Stage 1, grade 1 and pre-menopausal
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I'm going to just have my psychiatrist that prescribes my Lexapro deal w/ me trying Effexor...he's a personal friend & knows more about messing w/ these types of meds that an OB/GYN...I'll keep you posted...but I am MISERABLE!!!!!
Interestingly, I'm about 10 days late for my normally regular (& horrendous) period. Makes sense I'm going into menopause...Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!
Violet
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AlaskaAngel - thank you for your honesty. I agree with much of what you have stated, even though I'm apparently at a very early stage. Literature indicates that quality of life is negatively effected in proportion to the number of invasive treatments chosen (mastectomy vs. lumpectomy, chemo, radiation, and adjuvant therapies). This is something few docs want to discuss or are even capable of discussing when we are the midst of choosing our treatment protocols. And heck knows, we are all emotional enough about our situations to often want to do things to prophylactically hoping to avoid any future risk or recurrence anyway. We sometimes need a voice of reason and data and it helps to have someone who has had years to think about and share the outcomes of the choices made earlier. I am not suggesting that any of us make our own choices without grave consideration, but it is DIFFICULT to ask for options and to be basically told that this is a decision-tree model for treatment based on basically "old school" staging processes.
I left my doc and found a second opinion with someone who understands options and also that a recurrence of cancer isn't our only risk. It is the docs job to save us THIS time, but we have to live with it later.
I was grateful to be offered the option of chemo and ovarian suppression but declined due to the current availability of data regarding my situation and the implication that chemo might be of very little benefit but could actually be of great harm long term (long history of cardiac disease in my family).
Thanks for your input.
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As I have struggled through the decision-making, I kept an eye on others who also made such contrary choices about their care. For a while I conducted some online scheduled chats with others who had chosen to decline some aspects of standard recommended treatment for various reasons of their own. Although I haven't kept the chats going over recent years, I do keep up with the posts of those who participated in them. To date, not a single one of us has had a recurrence. I can't help but find that to be remarkably telling, about the odds of that happening, and about the claims that are made about how valuable and "successful" the standard treatments are. I hope some shred of actual experience is meaningful to others who are early stage and borderline.0 -
AA, if there were "Like" button I'd be hitting it.
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My experience with Effexor: It has helped me tremendously with calming and almost eliminating my hot flashes. It took a while to get at the right dosage, and probably the cooler weather has helped. I hate having to take another drug, but I was losing my mind from the lack of sleep. The scary thing is, if I forget to take the Effexor, I feel really loopy (drugged)--reminds me that this is a serious drug. A nurse had told me you can't just quit taking it; your body needs to be weaned off of it.
I suppose this gets back to the risk vs. benefit/quality of life issue. I guess I am not brave enough to shuck the ovarian suppression (and tamoxifen). I do feel like I've gotten past the worst of the treatment effects, and am looking forward to resuming my exercise routine (which just went out the window due to chronic lack of sleep. In fact, many times, I had to take a nap because I just couldn't keep my eyes open).
Wishing you all the best!
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Hormone Replacement Therapy news:
http://www.medicalnewstoday.com/releases/276317.php
and http://www.sciencedaily.com/releases/2014/05/140502172035.htm
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Hi everyone, I am just starting my journey into the post-operative medical oncology land. I am so glad I was referred to this thread. I was diagnosed last month and went from having 2 perky breast to having 2 tiny diep flap breasts that look like Franken-boobs (I am going to have to have more surgeries to "finish" the girls). As if that is not traumatic enough, I am now being told from my first MO I have to have "medium" chemo and tamox. I am 40 and having Stage 1 cancer (1cm with two .21mm microclusters in 1 or 3 nodes -- which the surgeon says could be just from the surgery), an Oncotype score of 20 and no BRCA but a family history of breast cancer. There is a part of me that really just does not want to take anything. Definitely not chemo and not the tamoxifen either. Is this just magical thinking? The idea of taking an estrogen suppressor and having to take more medicines to combat the effects of the estrogen suppressor seems absurd to me. And I am truly afraid of becoming "asexual", lethargic or depressed. It's bad enough I won't be able to have any more biological kids anytime soon (and who know if ever if I go on Tamoxifen). My MO admitted that they "over treat" AND they have no way of knowing if the medicine worked or if I just was going to be one of the 83% of people who would have survived anyway. She said if I see her in 20 years, I'd know it worked. I just feel conflicted and confused. If I don't take Tamoxifen, and I get a recurrence, I'll always wonder. If I take the Tamoxifen and some other terrible thing happens to my body, I'll always also wonder if I made the right choice. I'm reading some of your recent posts and I can't be "miserable" for the next 5-10 years with crazy menapausal side effects. Part of me thinks, it will be better to live happily for the next 5-10 years and deal with a recurrence, should it happen, when it happens. Is this crazy? Probably...
Thanks for letting me vent. Anyone in my same shoes?
Be well,
GG
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Ggal, sorry you're going through this. I recently went through it myself. I had a single mastectomy but chose no reconstruction. My girls were only an "a" cup anyway, so now I just have the one gal. Ha. I had an oncotype of 14, so I would've got a 1% benefit from chemo, so no way for me. I also had a tiny bit in one lymph node, she removed 12 and 11 were clean. I was Er/pr positive, so I'm on tamoxifen. I'd give it a try. My MO said 70% of patients have no side effects from it and I'm lucky enough to be one of those. I mean not a single SE except no period, and I consider that a perk myself! My MO also said it's good for my bones, heart and cholesterol. A 99yr old family friend fell down some stairs recently and only ended up with bruises. Her doc said she didn't break anything probably due to her years of Tamoxifen after BC. So there's two good stories in one. 99 yr old BC survivor and no broken bones. Keep in mind the people who have the SEs tend to talk more about it or seek help/advice from others, so you hear more about having SEs than not having them. Also, tamoxifen has been around for over 30 years, so there's plenty of research on it. Good luck and keep us updated on your decisions. I'm 48 with no family BC history. I'm the first! Kim
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I am 45 and was diagnosed 3/27 with IDC Mucinous Type stage 1 grade 1 100% ER+ and 100% PR+ Her-. I had a lx on 4/14 and im scheduled for 33 rads hopefully starting next week. My Oconotype was 12 so I'm not doing chemo either. My best chance is with Tamoxifen and I got my script today from my med onc I'll fill it tomorrow and pray for no side effects! It's my weapon of choice and honestly I can't wait to start it.
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stenokim, thanks for post I echo all you have said
Annice
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Thanks, Annice.
Sunshine, Good luck with the rads and tamoxifen. Hope it all goes smoothly!
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Thanks Stenokim! My pharmacy was out of tamoxifen. I chose 2 10mg tabs to start instead of the 20mg. Looks like it'll be here Monday! Rads start Tuesday. I'm concerned about that but I know it's a must do for me!
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Stenkim, thanks for the encouraging words. I have 2 more MO opinions to go, but I think the Tamoxifen may be in my future too. I will just have to pray it doesn't affect me either.
Be well.
GG
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GowanusGal, your MO is not the CEO of your body. He's just a member of the team. YOU ARE THE BOSS. You are under no obligation to take his advice on medical treatment. There is absolutely no sane reason for you to follow with chemo and AI, unless you want to overtreat the hell out of your cancer. And even if you DO decide on chemo and AI, be aware that the cancer CAN come back, so you will have endured all of that pain, permanent damage to your heart and loss of sexual satisfaction -- FOR NOTHING. I was in the same shoes you were in, in 2008, Stage I cancer. My MO was totally pissed off at me for refusing chemo and refusing to have my ovaries removed. I told her to PLEASE STOP TALKING about it. I did the right thing. I totally believe that the cancer would have returned even if I did choose chemo back in 2008. I have NO regrets about the treatment I did not choose. NONE. Live the life you want to live now, and you won't have regrets in the future. My voice is raised a little, I know!! But it makes me so sad to see other women who have a choice, choosing what the doctor wants for them, and not what they want. Cancer is a strange unpredictable beast and the treatment your MO is recommending is just the standard recommendation that is handed out to every woman in your situation. If I were you, I'd say no, and get back to living life with no regrets. (Why not save the chemo for when it's needed?) Peace to you!
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Tarheel Michelle, I so agree with what you said. I'm still deciding on treatment, though the most important one is surgical and that's done.. the rest are optional/adjuvant, which i will continue to weigh pros/cons.
While speaking to a friend yesterday, I realised two of her friends, both diagnosed in 2007, passed away from metastasis last year, and they DID EVERYTHING the doctors asked them to. The oncologist I consulted with yesterday, also said there's no guarantees especially for us seeking adjuvant treatment in early stages, though he did reassure me (from his years of experience) that for those who did chemotherapy, they had no regrets. He was hesitant to prescribe chemo/Herceptin for me, because in my case, my risk is neither high nor low.. and only recommended a regime after hearing more about my concerns.. though the main concern: HAIR LOSS he can't help much with because all drugs that go with Herceptin causes hairloss! The only regimes without that are the first generation CMFs which isn't as effective as the second/third generation regimes. I know it sounds so vain/trivial to worry about hair.. yet i can't imagine for just minimising risks, i might possibly gain a lifetime permanent side-effect that i've to live with.. argghghghgh!
Gowanus Gal, in Malaysia, where I am, many oncologists won't give chemo for stage one HER2 NEGATIVE! It's radiotherapy following surgery, and then tamoxifen for 5years. I wish I'm Her2-!!!! All i wanted was just radiotherapy after surgery!
Now I've to consider chemo because of the HEr2+ 0 -
Hi ladies, I'm going to toss in my two cents. I was 43 at diagnosis and I did choose to do chemo and radiation, and am currently on tamoxifen. I went with the "throw the book at it" approach. Although it was certainly no picnic going through the chemo, I am 7 months out from it now and have recovered very, very well. I started tamoxifen in January and it has not impacted my quality of life. I have most of my energy back, am running/swimming/biking regularly, my blood pressure is good, my sex life with my husband is fantastic. I don't have joint pain or dryness issues. In fact it cleared up my skin and I seem to be sleeping better than before! I do have some hot flashes and night sweats, but so what?!? I'd most likely have gotten that when I hit menopause anyway, so it's just a little early. I so completely agree that treatment is a personal decision that each of us has to make for our own self, and since I'm only 5 months out from the completion of my treatment it's too soon to know if it did any good or not. But I feel good that I did everything I could, and I have no regrets. I think that is the bottom line - what choices will leave you with the fewest regrets? One possible approach if you are on the fence is to try the treatments - you can always stop them if they become too debilitating.
There's even an upside to the hair loss: I've had long hair for as long as I can remember. The hair loss was pretty traumatic for me. It's now grown back to be about 2 or 2.5 inches long, and it's currently cut into a pixie. I would have NEVER cut my hair short, but it's fun and cute and I get compliments on it all the time. I feel sassy! You just never know.
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oh that's so good to hear of your positive experience YCats70!
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Thank you gals for sharing your very personal decision stories with me. I have 3 more MOs to chat with -- so three more opinions. My concern with chemo/tamox combo is that it will most likely permanently damage my fertility. And even with my DIEP surgery, I have this idea that I would like to have one more biological baby. So to Tamox or not Tamox, that is the question for me. The good news is, the cancer survival stats are stacked on my side! Even with nothing 83% alive after 10 years! The bad news is, at age 40, everyone says I'm "young" and that they want me to live beyond 10 years..sigh. If anyone knows what thread to look at for "kind of old and still want to have a baby after BC" please let me know! ha!
- GG
P.S. Tried to have a semi regular day today of multiple appointments and lunch with a friend. Found out, that at 4 weeks out of DIEP surgery, it is still not a good idea. Talk about fatigue. I feel like I ran a marathon!!! My body is still in recovery and the surgeons were serious when they said I needed at least 6 weeks. It's crazy to have to bow down to this process.
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The "But you're so young" comment from my oncs. is precisely why I didn't think chemo was right for me. I was (and still am) planning to live until my 80s or beyond. What treatments would be available for me in my 50s if I did chemo at 44 and Stage I? Of course, my doctors were not being completely honest about chemo, telling me only that I would need chemo this one time. Makes me sad to see early stage women congratulating themselves for getting chemo out of the way, as if it's a rite of passage, never to be repeated. There's no complete answer yet on the long term effects of chemo. As we see women in their 30s getting it, we will have to see how their health holds up. Some chemos can cause leukemia.
GowanusGal, good luck with your Tamox decision. I'm a huge fan. It's keeping my cancer at bay. But it's miserable. The dryness it creates leads to constant UTIs and pain, even with the controversial Vagifem inserts.
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Yo!
With so many decisions to make in such a short amount of time, I think this moment in time is the most difficult period. There is another thread devoted to younger women who still pine for a baby. You will find lots of different threads that will offer all kinds of support through your journey. I promise though, that once you decide on an active treatment plan, the journey should become a little more gentle and kinder....I wish you well!0 -
I just swallowed my first tamoxifen!! My husband doesn't understand the significance of that little white pill but I know I'm in good company here! I'm happy to have it but also scared poopless about potential side effects! Today was also my 1st day of rads. 1 down, 32 to go!
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I hope people remember that other factors play a part in the decision making process besides just "Stage." What is the Ki67? The P53? These aggression factors of the cancer may make a difference in a final decision. Also issues like fertility will make a difference in a treatment plan. There is not a one size fits all solution. Chemo may be right for some and not for others. I have not yet met an early stage chemo-goer who has congratulated themselves on "getting it out of the way." Those I speak with are worried that it will metastasize and are hoping that perhaps the chemo will help prevent, or at least ward off a little longer, that possibility. And we are all quite aware that it may or may not have worked, and that we may or may not have to repeat it later. And tamoxifen does not have to be miserable. That is a personal experience and not a generalization - each person's experience is different.
I hope this board can continue to be a place where people can share their own experiences without passing judgement on others who have made different choices. The bottom line is that we are here to get and share information and to support each other regardless of whether we would have done the exact same thing ourselves.
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My onc explained that chemo just doesn't work well on non aggressive cancers. All of the risk of it harming my body with no real effect. Because I am 99% ER positive, he indicated Tamoxifen is what will keep it away.
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Ladies, I met with the second oncologist today and liked her a lot. She was also sort of "up to you" on the chemo but "definitely the tamoxifen". She was also open to me having a baby break (if it is still possible) after the Tamoxifen...so I am feeling a little hopeful today. She admits, they really don't know if the chemo will help my particular case and it is a decision that must be made on whether I feel "throw the kitchen sink at it" is the solution or if I feel Tamoxifen is good enough. The most surprising thing she said was that she would be open to me having a baby now (I don't think I can with the DIEP flap recovery) and starting Tamoxifen later. WOAH! I have to find that thread on babies and BC.
They really don't know given my stage and age if the surgery alone is enough and I liked she admits that -- and they can only give the recommendations based on the research now.
Ah, so many decisions. At least I have a good book to help me --Emperor of Maladies...so so good.
If anyone else here had a baby post BC,please let me know!
-GG
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P.S. Sunshine...please let me know how it goes!
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GG rads are going great. I'm only two in so I hope I'm still saying that in a few weeks! I've swallowed my 10mg tamoxifen. I took one last night and another this morning. I've had crazy energy all day and feel fantastic. I hope I'm still saying that in a few weeks as well!!
I've read many threads on here where people had baby breaks! This is the most knowledgable well round honest group around. I'm sure you'll get info soon!
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Study may open new options for younger women with breast cancer
7:31am EDT
CHICAGO (Reuters) - The estrogen-blocking drug Aromasin worked better than the long-standing therapy tamoxifen at keeping cancers from returning in younger women with early stage breast cancer, a finding that may change the way the patients are treated, U.S. researchers said on Sunday.
Aromasin, a drug developed by Pfizer Inc that is sold generically as exemestane, is in a class of treatments called aromatase inhibitors that are typically used in post-menopausal women with low levels of estrogen.
Aromatase is an enzyme that converts the hormone androgen into small amounts of estrogen.
The drugs have largely been off-limits for younger women with working ovaries that produce estrogen.
In premenopausal women with hormone-sensitive cancers, the standard for preventing recurrence is five years of treatment with a drug called tamoxifen. For high-risk women, doctors in some countries recommend exemestane plus some form of therapy to shut down the ovaries, cutting off the supply of estrogen. That practice is not typically followed in the United States because there has not been enough evidence to show a benefit.....
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I posted this question on another thread about this latest study looking AI's with ovarian suppression vs. tamoxifen plus ovarian suppression, so forgive me for being repetitive, but I thought more people might weigh in here. I kind of expected these results (not necessarily surprised) - obviously want to see the longer term data and if there ends up being a survival difference, but am wondering what to do in the meantime... I'm currently on zoladex and tamoxifen. I'm 38 and considering having my ovaries removed rather than continue with the monthly shots - MO seems to think this is unnecessary, but my OB/GYN (who found my lump in the first place - to the amazement of many specialists afterwards) thinks it's a good idea even though I am BRCA negative. So, let's say I take them out or continue to suppress them, do I stay on tamoxifen for 10 years (barring any changes) as originally recommended? Do I do tamoxifen for 5 years and then an AI for the next 5 based on this data? Or the other way around? Obviously I will ask my MO during my next appt, but just wondering what the lovely, educated ladies here think too... Thanks!
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Nan - im in the same exact boat (although I was stg 2 her2pos) im on zoladex with tamox. Ive been on for 2.5yrs - I have an MO appointment this Thursday and will ask this EXACT question.
if anyone has spoken to their MO about this please weigh in
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Nan...the questions you ask are the same questions that we here are all asking. I wish someone had the correct answer! We have all been waiting for the results for SOFT and TEXT. While the news about the AI sounds promising, the question about over all survival might not be known for many years to come. Now with respect to 10 years of Tamoxifen, that recommendation was made last year following the ATLAS trial followed by the aTTom trial. That said, it encouraged patients to consider 10 years. Now, complicating the matter is there is no direct evidence to support at this time more than 5 years of an AI. So what does this all mean? I don't think anyone knows for sure! I did 2 years of lupron and Tamoxifen and have been on letrozole, an AI for a little over 2 years because I am now post menopausal. My oncologist told me back in 2010 when I was diagnosed that I would be doing endocrine therapy for 10 years! And his recommendation PRECEDED the ATLAS study. So despite no evidence at this time supporting more than 5 years of an AI, I am poised to complete 8 years of an AI along with the 2 years of Tamoxifen. And who knows? As more studies are published, they may push out further the number of years.... All good questions, but no definitive answers....yet....
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