Starting/declining hormone therapy Nov, Dec, Jan 2018
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Oh, Spoonie, I am so sorry! I can totally relate to your and edj3's plight. In January of last year I was diagnosed with melanoma (stage 0, thankfully), which prompted me to do the whole body check. This is how my BC was discovered in March. I've been suffering from Thyroid issues for years, since I had Grave's disease. Then I was treated with radioactive iodine and now am hypothyroid. All wonderful things thanks to Chernobyl, I think. I was a teenager living in Ukraine when it blew up.
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I've stopped my Femara in hopes of reducing the side effects. anyone have any first hand knowledge with regard to improvements and how long it may have taken? according to much of the literature, the 4 years that I've been on it is already more than most women. the vast majority stop long before this. just needing some guidance on those of you that have stopped and what it's been like for you. I appreciate any input here
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it takes several weeks or longer for your body to Adjust. I had worse hot flashes coming off. And sadly you may find some side effects are permanent. But on the bright side my knee pain is light years better and my sleep has gone back to normal.
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I can't believe I'm only 10 months into this sh*t.
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Because we could all use a little furry comfort and smiles, here is another pic of our most mischievous and adorable Finley.
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I had a six-month check-up with my MO today. Asked her for something to help with the fatigue/brain fog. No dice. I'm going to switch to Exemestane and see if that makes any difference. If not, she said at least I can tell my PCP I've tried several things. And so it goes. . .
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Ingerp I have a friend who had to stop her AI because of brain fog. Another friend solved her fatigue and slowness with an antidepressant. Someone on another thread on this community mentioned that Gabapentin was helping with brain and mood and also neuropathy issues, after chemo and while on an AI. So, asking your PCP about various possibilities sounds smart to do.
When my MO prescribes something, for my cancer, that causes other issues (for me it's worsening arthritis pain), I have to then self-advocate to my PCP for a possible solution (which for this issue is an Rx NSAID, Meloxicam).
I'm SLOWER now than I used to be. I am sure that it's the magic alchemy of being older, having had chemo and surgeries last year, and the wear and tear and terror and anxiety of cancer, and also being on an AI. I don't have brain fog, but I have slower processing. I don't have debilitating fatigue, but I have to sit down and take a break more often in my everyday activities.
I'm glad you're following up and trying to find a solution.
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Hi, I see most of you Ladies with Stage I having radiation and/or chemo. I am diagnosed Stage 1b and I was recommended only Lupron and Letrozole. My surgery was on Sept. 19, 19, first Lupron shot last week and in the end of November I'll start Letrozole. I wonder why I wasn't recommended chemo or radiation. I had a small invasive lobular cancer on my left breast and 2 out of 5 nodes positive. I am nervous about Letrozole. I heard lots of horror stories.
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HikingLady—thanks for all of that. I thought about you today. The unexpected news at my MO was that I’ve lost 11 pounds since January. I haven’t looked at a scale in over two years but after the nurse weighed me she asked if I was trying to lose weight. I guess the screen flashes if you’ve lost or gained more than 10 pounds since the last weight check. It was a really nice surprise.
Lilly—what is your dx? That would be helpful to know. Most people tolerate the AI pretty well. I wouldn’t expect it to be awful. The women with milder SEs tend not to post as much. ;-)
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I decided to stop Letrozole a week ago. I can't say I felt any definite side effect although my body and bones do seem to ache more. That could be simply due to aging and the fact that I am on my feet most of the day
The main reason I quit is that it increased my cholesterol. I have high blood pressure and heart disease (and breast cancer) runs in my family.
I feel as if I am the only one who has a problem with doctors messing with my hormones. I hate that they automatically tell ALL estrogen positive women to go on them. For many, it absolutely makes sense. But for me, and I assume others, the benefit just doesn't outweigh the harm it causes. Your body still makes estrogen after menopause for a reason.
For me, breast cancer, even though I have had it twice in 15 years, is not even in my top three health concern list. First is my heart, second is my shoulder replacements and bones, third is my absolute fear of Alzheimer's Disease. Estrogen is needed for brain and bone health.
I can hear my breast surgeons exact words, “you might have to take this tiny little pill for five years." Really? No, not true, oh there is a tiny pill, Letrozole,but also two huge 1" pills containing calcium and Vit D, and Lipitor to counter the increased cholesterol and so on and so on.
I had a lot of concerns about the calcium, as I got no information from my MO, only how much Calcium and Vit D to take. I did some research and found out taking it all at one time was a waste, as the body couldn't absorb it. I divided the dose and took it twice a day. Also some say to make sure to take magnesium to Ao the calcium will go to the bones and not cause plaque in the arteries. I already have some calcium buildup in my arteries, don’t want to add more!
My cancer both times was stage one! No metastasis. I was refused a BMX, supposedly because they don't remove a healthy breast and the doctors felt my risk of getting it in my right breast is very low.
I have NO reason to believe if I got it again that I wouldn't find it early. My Oncotype score was low, 21.
For some women the AI can be a life saver, but not for me. My life was saved by surgery. My breast surgeon told me “ You are free of cancer” when I saw him in August. Considering my age of mid-60's it is more likely I will die of something else.
After much thought I decided I need to do what is right for me and what is right for me is to say no to Letrozole
Spoonie, I am so sorry you are going through one nightmare after another. It really is so unfair, but all of us know all too well that life is not fair. I wish you the best care and a fast recovery!
Pebbles, your puppy is precious! How could anyone look at him and not smile? Thanks for posting
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mavericks mom, I so agree with you. I think every one should be given their personal risk benefit from these drugs. They can have serious side effects and may not be worth it. Yet it seems everyone is put on them automatically. I realize many women benefit from them but not all. In my case they only reduced my risk of recurrence by 2%! Yet they caused 10% bone loss in six months and gave me osteoporosis, made walking difficult, sleep hard, and joint issues. So a no brainer to stop, but in my case I would have been better off without them. So just like chemo, these drugs should be evaluated based on an individuals risks and benefits
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mavericksmom and bennybear - totally agree that we should all evaluate based on our own risk/benefit scenario and the side effects we are willing to risk and tolerate. While I continue to take tamoxifen, it's partly because I seem to be faring fine on it and so I think I can do it. I applaud your decision to stop something that wasn't right for you. Remember we are all given advice but it's our decision on what to do. I insisted on the oncotype test which then helped determine I didn't need chemo (I had to advocate for myself in that) and declined a further ALND due to the high risk of lymphedema but was fine with radiation because I felt I could manage those SEs (and did). The clear mammogram and very few SEs I have makes me feel I made the right decisions for myself along the way.
I have a sad side story to share. A friend of mine just shared her shock at her friend who was diagnosed with breast cancer last summer and is now in end of life hospice care. In her case it seems she did chemo and it was very damaging. It's heartbreaking and when I learned about it, I wonder if she could have chosen another path, and it angers me that her doctors all probably told her to do this and that it would be fine, and now that it's not they are probably just moving on to the next patient. With all the aches and pains and other things we are having, when compared to this suddenly we are the lucky ones to be able to complain about SEs or worry about recurrences but we are still here and fighting and living.
OK so on the positive, in a success stories thread a lady just posted about her mom who had 4 positive nodes, only did the surgery and hormone therapy, no chemo, and is thriving and healthy 18 years later!
Anyways, bringing it back to weekend fun, here is our full of puppy goodness Finley:
And Domino and Tucker teaming up now that there’s a new puppy in the house.
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Pebbles, those dogs are just too, too cute and mavericsmom is right, you can’t help but smile and get a warm feeling when you see them!!
I made the decision to not even start an AI bc of all the potential side effects. My recurrence risk is 2% with an AI and less than 3% without. I have had ovaries out, BMX and a low BMI, 68 years old, so not much there to produce estrogen. I feel like the risks outweigh the benefit and the way I see it, by not taking an AI I am risking one thing....bc recurrence. If I take an AI I risk a number of things and have a poorer quality of life. I am amazed at the number of patients who are given NO information about potential side effects of AI’s. It’s just assumed we will take them. When we do, often other medications are needed to manage SE’s. So my decision has been to continue to eat well and I have bumped up my exercise. I might add, I have been judged by many for not “following drs recommendations”, but I value quality of life over longevity. I’m not afraid to die but I am afraid of spending the rest of my life with debilitating conditions
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I definitely agree that our risk/ benefits of hormone therapy should be explained for our specific situation! I had the mammaprint so I did not get any percentages in the results. I would love to understand my specific risk of recurrence with and without tamoxifen. All I could get from my MO was it would be “ very dangerous “ to stop taking it. I was also left with him saying that at 5cm “some would argue that I would have needed chemo” despite the mammaprint test ( my tumor was 4.8cm) He was using that statement I feel to scare me into staying on tamoxifen. But that statement both scared me and pissed me off. He didn’t mention that when the chemo decision was being made. Anyway, I am still struggling with fatigue that’s affecting my QOL, the brain fog is real, and very frustrating and embarrassing. I am finally going to get a referral to talk to a different MO. Hopefully this one can give me the answers I need.
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Dani444 I'm glad you're going to see a different MO to discuss your options. Ugh, that's super weird and strange that he would suddenly try a guilt trip about Tamoxifen and bring up chemo. Either you would have benefited from chemo or not, and it's weird to suddenly bring that up so much later....
ABSOLUTELY your MO should be able to tell you specific recurrence risk probabilities with and without hormone therapy. Those outcomes are in NCCN tables for oncologists to refer to, and they're specific to each path. report and sub-category of diagnosis.
My MO was super good at explaining all of the risks and benefits of every decision along the way, with compassion and clarity. He explained exactly what my benefit (which in this case means the reduction of recurrence risk probability) that I was gaining by being on a hormone medication, which for me (post menopausal) is an AI. For me, it's a huge benefit, when weighed against the risks and the SE's, so my decision is definitely to be on it, but everyone's DX and TX options are different. Also, other health considerations have to be weighed in this decision.
Don't forget to be in touch with your PCP about all of your health challenges. Have all other health issues that could possibly be causing the fatigue and brain fog (thyroid, iron levels, depression) been ruled out?
These days, there's a ton of data that's been mined on breast cancer, mapping outcomes for very specific TX and DX over a long time period. NCCN (National Comprehensive Cancer Network) guidelines are a clearinghouse for all this information, and they inform recommendations for treatments, and also HMO reimbursement guidelines. What this means for us patients, is that it's not guesswork as much as a few years ago, when there was more "I think," and "Maybe we should try" involved in treatment decisions. We're being treated in an era of evidence-based medicine. Statistical probabilities are not the same as guarantees, so there's still a lot of hope and chance involved in every decision, but at least we have a body of evidence pointing some good directions for us. Which means that every decision we make for our treatment is STILL REALLY HARD TO CHOOSE, but at least it's relatively informed---we know some probabilities, these days.
I was treated and cured successfully in 2003 with breast cancer #1. So, I'm part of some good outcome statistics. Staying hopeful that this will also be the case with #2, which is a more serious diagnosis. Ugh.
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And my heart rate issues continue and now all of a sudden, my blood pressure is high. I stopped the tamoxifen four weeks ago, I can't get the Prolia out of my system by doing anything, that will just take time.
I requested the MammaPrint also (actually I requested the Oncotype but my MO doesn't use that one). I'm low risk but up at the edge between low and high risk. So I would love it if I could be on something that didn't give me dangerous side effects.
This just stinks.
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Sorry everyone. I'm having a super hard time. Wish I could follow everyone's journey's at the moment....just can't....am in tears.
This past week has been beyond difficult. *understatement of my year*
Hearing that I have another cancer has set off some sort of chain reaction in me. It's raging out of control and to stay distracted and sane, I have cleaned and cleaned and organized and cleaned some more. I think I could eat off my floor or hold high tea in my closet or conduct a TED talk from my bathtub as my stage. I'm exhausted mentally and physically, yet I cannot sleep and when I do I have nightmares of cancer.
It's awful.
Even though pathology says Papillary Thyroid Cancer, I don't know why I can't accept that "this" is "just" what it is. IDK if this is my own sense of intuition but I just feel that it's NOT. I have so many unexplained symptoms that fit with BC METs or Lymphoma (my brother passed away from it). I have every single finger/toe/eyelash/eyeball crossed that I am wrong. Please let it be "just" TC!
No one will listen to me and just run the dang histopathology stains on the biopsy slides from my Thyroid to confirm that there aren't any ER/PR + receptors. There is a test and no one will run it. There are characteristics of my biopsy that are out of character for TC, some that are found in BC and in Lymphoma. I just want to know and sadly that's out of my control.
I did my best to find out and now have to admit defeat and wait out the "clock" I tried with my Endo, with my MO, and with my Primary. They all say that knowing NOW will not change anything all for my treatment and will not increase my quality of life. They can see no medical benefit to finding out now so I have to wait, for surgery, which could still be another month away. I do not see my surgeon until the 11th which still seems a lifetime away. Sure, there may be NO medical benefit, but apparently no one at all cares for my peace of mind or the anxiety that is eating me away from the inside out. Trust me I explained to them all exactly how it was impacting me, and while they were sorry, they did not budge on their decisions.
Anyone have ideas I can try or how maybe you managed to wait after being dxd with a 2nd cancer after BC? How did you not go crazy with anxiety worrying about METs? I mean in my mind, I had a clear Neck US 3 years ago. Then BC. NOOOWWW Thyroid Cancer? Seems just bizarre timing. IDK. The mind is a dangerous thing to run loss, especially when it knows too much information.
I'm at a loss and all I really want to do is cry, which I do occasionally, but it's nothing that can be solved until they have the tumor out and know exactly what it is.
Thanks everyone....I'm hanging by a thread, could use whatever anyone has to spare to help me get through the next few weeks.
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Spoonie - when I was waiting for all the appointments and results, I felt like I had to do SOMETHING to fight the cancer, so I started reading and researching all the alternative things I could do outside of the medicine. Chris Beat Cancer, foodforbreastcancer.org, a book called Radical Remission, another one called The Perfect Health Diet. It helped. It helped because it made me feel more in control and that I could do SOMETHING and not rely ONLY on the docs and medicine to beat this.
Now you know that I did and am doing a lot of traditional treatments so it’s not like I read the alternative books and then would forego and other treatment. I did both. You are deep into research like me and I just looked at it like learning from both sides and applying what fit me.
So, I think this is something that might be helpful and comforting to you so that you don’t feel like you’re just waiting for the medical side of things. While you wait, you can do something. And you’re like me, you can read it and research and find what fits vs blindly following (Chris Wark from Chris Beat Cancer has an AMAZING story and did beat a very aggressive cancer, but also his methods were pretty extreme and doesn’t have to go that far, but I took some of what he said on how the healthy eating can really apply to improve your body).
Anyways, that’s my suggestion. I know it helped me to feel like I could do something and not just wait. I hope it helps you. Finley is here to say that you can untangle that rope!
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Spoonie77 You are amazing. You do have huge inner strength. Believe in yourself. Give yourself some space and comfort and self-care, whatever that means. Chocolate, sunshine, puppies, music, dinner with a friend, music or a movie you love....find something that feels like DESSERT in life and serve it to yourself right now, as the first course.
You've gotten through other hard things, and the truth is probably that this TC is absolutely curable with the plan ahead/surgery, etc. You will get through this new challenge. Your fears and terrors are very justified, and you're understandably really used up on drawing on all that amazing inner strength that we all see, when we read your posts.
Your self-advocacy, your intelligence in learning what you can to support your treatment and good care, your sense of humor and perspective are all outstanding.
Your doctors sound like they aren't lacking in compassion, but are just following standard protocols, which don't allow for helping a patient with this anxiety. A total bummer, because you have this worry. So sorry about the worry along the way, but I certainly can understand it, and really am so sorry that you have all this to face right now.
Thanks for sharing, here, in this safe space, how you're feeling. I send you warm wishes and gentle hugs and support as you wait this out.
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Spoonie - Hiking Lady is right - doctors tend to follow standard protocols. They forget how important the mind and emotions are to our physical health. I am so sorry for all the worry and anxiety and everything you are going through. Your reserves have to be on empty. But you are an amazing woman and you will bounce back and if cyber strength counts everything everyone is sending you from here should help fill up your tank. Wish I could give you a major hug in person but I guess a giant gentle cyber hug will have to do. Hang in there sweetie we are all routing for you.
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Edj - I am sorry for all the problems the damn drugs are giving you. As someone who reacts to almost everything I really empathise. Have you checked out grape seed extract. The Mayo Clinic was doing a study that was showing promise in this area for reducing estrogen without the sucky side effects. Fingers crossed your docs can work out something for you.
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Hi Spoonie, I have no advice but just want to say I am thinking of you...and Edj3 and everyone else...
I will see my MO on 12/31 which is one year from the day I finished radiation. I am anxious to talk to her about the SEs I am experiencing from letrozole. I was doing pretty well at my 6 month check up but things have gotten worse. I already had osteopenia and osteoporosis so I get Zometa infusions twice a year now. My cholesterol was elevated and I just had it checked again and it has gone up even more (another SE) but the thing that is bothering me the most is joint pain in my fingers. I already had some minor osteoarthritis but it is way worse now. I worry that if it continues to worsen my hands will be useless claws. I'm sure I can take something else to help with the pain, but like giddyup said....letrozole-one little pill, then a whole lot of other pills to counteract all the SEs. I am still having a lot of fatigue which means a lot of afternoon naps and staying in bed very late in the morning. I can't imagine how I could ever work full time or take care of young children. I plan to ask my MO about taking a little break from the AI. She was very clear that since I said no to chemo it would be very, very important to take the AI. Right now ILC patients and PR- patients are treated with AIs like everyone else and I don't think there is a lot of research to show how effective an AI is with my dx. I guess it's the only thing they have to use. My MO said my 10 year risk of distant recurrence is 21% (15-18% if I exercise) and if I don't take an AI it would be 40%. For me, stopping an AI is not an option.
Lillywashere-I don't know why you weren't offered more treatment but an AI is supposed to be better than Tamoxifen for ILC,so that's good. You're from Boston so I am thinking your cancer center docs are top of the line. I'm sure they can answer all your questions.
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Spoonie, I am sorry, not knowing is always worse than knowing and dealing with it. For me, the hardest part was I developed a huge hematoma when they attempted the first biopsy. It then took over three months until they could actually do it and I felt like I had a ticking time bomb inside me that was going to spread. My surgeon said we could go ahead but would I want to not knowing so I waited and was fortunate.
My yoga teacher always said the past is the past and today is the present a gift and that is all we have. So if you could try a gentle yoga it may help. And you find something little in each day to enjoy or enough to distract you. It may also be helpful if you could see a counsellor who deals with cancer. I am sorry this modern medicine doesn't deal with the angst we have to deal with! Gentle hugs!
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Spoonie I have no particular wisdom to offer you but am really glad you can vent here. I hope that is some small comfort. My first thought is I think if I were in your situation I might like to mentally check out a bit, either through an MD (anti-anxiety med?) or maybe another way (I have kids who live in CA so I have access to things if you get my drift). Or treats for yourself? I ate chocolate chip cookie dough ice cream every day through chemo. Is there anything that distracts you? Junky TV? Bingeing on Netflix? Going out to a movie? Even getting an hour or two when this wasn’t front and center in your mind might help. We are all holding your hand.
For others struggling with whether to start/stay on an anti-hormonal, make sure you’ve run the risk calculators. My BS told me and they confirmed that for me, the AI us more important than chemo or rads in preventing recurrence. BCO has been good for me in terms of advocating for myself in terms of SEs. I have been very much a just-live-with-it kind of person but am trying to keep my big-girl panties on and follow up with my PCP to try to address the fatigue issues.
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Spoonie, I’m sending tons of love and support your way. I so wish I could do more! You are an amazingly strong advocate for yourself, and a great friend to so many of us here. We are all in your pocket!
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My words are wholey inadequate, Spoonie--please know you're in my prayers and if you're not the praying sort, then I'm sending you calm healing energy.
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Spoonie I have not been in your shoes but I can say when I was waiting for my surgery I couldn't sleep and I choose to take my BS up on the sleeping pill option. I didn't take it every night, more like 3 days a week, but that precious sleep helped me function. Big hugs to you!
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I can never really convey my thanks and love to you all. Just T H A N K Y O U from the bottom of my heart for all of the support, kindness, and virtual hugs you keep sending me. Think I'd go crazy if you all weren't here. Just you are all the best.
I'm getting by, only 6 more days till I see the surgeon. HOping surgery won't be too far out after that.
Meantime thanks to having had anti-anxiety meds for years (Clonazapam), am popping these more often than I like but I know it's a temporary increase and have never had problems going back to occasional use as needed afterwards. Thankful I gave in to using rx sleeping pills (Lunesta) or I'm sure I wouldn't get sleep at all. Just wish it could get rid of the nightmares. Had a doozey the other night where I can't even explain but I was awake during surgery but they were operating on a numer of places all at once. I woke up in tears!!! UGGGGH!
Like many have said, am running on empty after this LOOOONG year of crazy medical issues but maybe after Christmas I can go back into recover mode after so many months in Fight or Flight. A girl can hope.
Anyway, I'm burning through Netflix/HBO/Hulu like crazy. Discovered how awesome "The Fall" and "Killing Eve" were. Hope there will be more seasons. Highly suggest them if anyone else is looking for something good to watch.
Glad I picked back up some basic Pilates (did you know Amazon has them in FLASHCARD form??? handy to do a few during commercial breaks! lol) and my beginner Yoga early in Oct. Been finding some peace will I'm focused on regaining a NON-ButterBall Turkey type feeling while on the floor doing forms! HAHAHAHa....I told my counselor I"m hoping to be down to just a Golden Plump Chicken for the New Year!
Thank goodness my Dad taught me to keep my sense of humor, right????? It's priceless. Hope ya'll can laugh a bit with me. My only way of paying you back a bit for always being here. Sending you love and healing and laughters.
EDj3 - > I sure hope your Echo/Stress Test comes back ok and the longer you are off the Tamoxfien the better your heart/BP feel. Hang in there. Am thinking of you too!
Ingerp -> Hope your PCP can help with the fatigue. I know it was nasty for me. Lots of options seem to help others, sure hope they can find one that helps for you. Keep us posted.
MavericksMom - > Kudos to you for doing your own research and soul searching, that's all any of us can do. If you are at peace with your decision, that's what matters. You have to live in your body every day, not your dr. Also, I couldn't agree more with you about how those with other health concerns (Alzheiemers, Heart Issues, etc) sure have to walk a fine line between prevention of BC and spurring on the pace of other dangerous medical conditions. My current MO said due to my MS that I probably shouldn't be on any hormonals either, since lack of estrogen could make my MS progress more rapidly. I wish more MO's would be more proactive in testing who would benefit most and taking steps to make sure the meds are actually being metabolized and having the desired effects. It seems that would make sense....you'd think. Le Sigh. Anyway, hang in there and if you change your mind, those pills will always be there.
Pebbles -> Thanks again for the Finley picts. He is just a great addition to your family! And you're right, I've been researching and learning when not hiding under my bedcovers with anxiety! LOL. Have a list of what I "want" as far as surgery/treatment options for the Thyroid Cancer mapped out with reasoning backed up with studies and facts. Plus am taking my brother, who had TC as well, with me to my surgical appt. I'm prepared!!
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Spoonie - SOooo good to hear from you! I'm glad you're hanging in there with your detailed approach to life and sense of humor intact. I might look up those shows, my husband and I need something new to watch together! For some reason he is not as fascinated with 90 Day Fiancé as I am lol.
I think it's brilliant you are taking your brother to your appt. with the surgeon and I know you will be armed with your usual well researched questions and make sure the way they approach your surgery is right for you. We are all here now to help you wait out the wait, we will be checking in to see how things went, and there for you to help you through the post-op recovery too. I have a million pics of Finley in a week lol so plenty to share!
First though, can't forget Domino and Tucker who seem to be getting closer now that there's a new puppy in the house...
And Finley is here to provide some virtual cuddles whenever you need them
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hello, venlafaxine stopped my hot flashes! V small dose, taking exemestane after oopherectomy. Lupron wasnt working for me.
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