Starting/declining hormone therapy Nov, Dec, Jan 2018
Comments
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Spoonie--I feel like I've read about lots of eye issues. I've always tended toward dry/itchy/allergy-y eyes, and am going in tomorrow to have some kind of super pictures taken of my left eye (can't remember the name of the procedure). I had a regular eye check-up in April and apparently I have increased pressure in my left eye? The doctor asked me if I have any glaucoma in my family--oy! In my head it's related to the AI. Yes contact your MO but I have a feeling it'll resolve on its own.
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Spoonie...I do remember others saying they had eye issues from anti hormone therapy. Hopefully some of them will come along to share.
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Spoonie - sounds like a migraine maybe? They are often triggered by changes in hormone levels. Mine always feel like eye aches and sometimes come with slightly blurred vision. Ibuprofen always works for me but I have to take three of them, normal dose is two. Caffeine canalso help.
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Spoonie, I had to stop tamoxifen for a bit if you remember due to an eye issue. Mine turned out to not be related but my ophthalmologist did say tamoxifen can cause macular edema. I would definitely get to an eye doc to get your pressures checked, and investigate the blurriness.
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Yikes, ladies. Thanks for the reminders and shared experiences. It helps me to not feel like I'm just imagining this and linking it to the Tamoxifen. Hoping this will pass on its own but I will definitely head into the drs asap.
I do get regular migraines and had one a few days ago actually. This is not that, but I wonder if the migraine contributed to whatever this is that's going on since it started on the tail end of ending Tamoxifen and the migraine? Seems plausible.
Will keep you posted!
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hey there- Might be good to also
call your eye doc and run these
symptoms by them-
could be nothing- and even unrelated
to tamoxifen- but i had similar issue
( pre cancer days)and had a painless
laser treatment to relieve “ pressure”
from “ narrow angles”...dont delay..
i speak only from having had this-
good luck! dont worry....0 -
Thanks Cassie. That is good to hear. Hope it's nothing at all.
As to the eye dr, I don't have one yet, moved this year so cancer took priority. Am on the phone now trying to get in to see a dr in my network that is in Ophthalmology. Looks like I can get in this afternoon. Super. Better to find out what this is, rather than worry. 0 -
awesome! being proactive puts us in best
position to help ourselves in the best way
possible- be it reassurance, further tests etc
I am sure its ok- if it does turn out to
be a pressure issue- meds/drops may be
first line of action- in my case- he just
booked me fir this utterly painless procedure
that saved my eyesight- it was all rather
calm in hindsight as he kept reiterating
that the problem arises when most people
chiose to avoid this remedy.
so good fir you fir taking charge- keep
me posted and good luck this af
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Ingerp…..I definitely had increased pressure in my eyes, I attributed it to taking Arimidex. I have been off of it since November after taking it for two years, my eye pressures are back to normal!
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So here's the update my friends....
My MO messaged me today to say that I should definitely be seen asap, by that time I was already in Urgent Care. I had an appt scheduled when I posted earlier, but it would've required me to drive an hr to be seen, and thankfully I found a UC that could see me for the eye issue so I didn't have to drive.
I saw the dr in the UC, he went to consult another dr, and then I waited in the room for him to come back. I was a bit panicked when a nurse came in 15 mins later and told me that Ophthalmology would be seeing me downstairs right away. They had made me an appt.
Anyway, saw a nice dr, he was thorough. Things are a bit inconclusive right now. I do know that I don't have any infection, damage, injury, or increased pressue so those are huge pluses. (although they didn't have the big machine that you put your chin in to test the eye pressure, it was handheld one...not sure about that honestly)
Right now, he doesn't have an explanation for what I'm experiencing but he does say that my vision is definitely decreased on the right side and there is irritation more so than in the left. He said I'm to call him back on Thursday to update him on my condition. He gave me rx eye drops and directions to not wear my contacts for the next 2 days to see if that might help. He also told me he would do some research on Tamoxifen effects on the eye before I called him on Thursday. Think I have found my new eye doctor! LOL.
At this point, I'm just glad there isn't anything super serious that he sees going on. The pain and pressure is still there but I am hoping it will go away on its own this week. We'll see how things are going on Thursday.
Anyway, thanks everyone for the support and encouragement. It's been a long day but at least I have peace of mind at the moment. That's sometimes a very priceless thing!
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Yay, Spoonie! Hope all turns out well.
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Hello Everyone,
Spoonie, I hope you are feeling better now. Inconclusive is not a word we want to hear!
I want to recommend an absolutely awesome experience. I just returned from a Casting for Recovery weekend. I had completed an application last October and was thrilled to be selected (totally random drawing) to attend. You can find out more about the experience on their website. It was a great weekend!
I had my first Zometa infusion (to help prevent bone loss and protect bones) on Wednesday. It went very well and I did not experience any unpleasant side effects. Yesterday was my "survivorship" check up (through the radiation dept.) and education and that was good too. Next week will be my 6 month mammogram. I did ask if an ultrasound or MRI might be in order since my cancer was lobular which is hard to detect. My BS said no, data shows no benefit from extra scans. I also asked my MO on Wednesday and she said the same thing as the BS-not necessary.
Take Care.
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LPL--I got to go to a Women's Fly Fishing weekend that my cancer center sponsors every spring. I was a little iffy going in but it was an *awesome* experience.
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LPL -- good luck with your next appt and your first scan! Keep us posted. Will be hoping for all clear! I was super nervous my first scan. So much anxiety. I wonder when/if that will ever go away? My next 6 month follow-up will be a Breast MRI in OCT. I'm hopeful it will show clear too. Anyway, if you're nervous, you're not alone. Oh, and am so glad to hear you had an awesome experience with Casting! Sounds lovely!
Update on me -- the eye issue is still going on, BUT seems to be slowly improving. I followed up with the Ophthalmologist yesterday and am waiting a call back from him. At least my vision is less cloudy at this point, and the pain and pressure in my R eye seem to be lessening. Perhaps by next week things will have resolved. I have no idea what to chalk this up to, other than "yay, my zerbra-ness strikes again".
In other news, my MO is processing orders for me to start Lupron injections and then after 2 months of those, I'll start Arimadex. Gotta say, I'm completely awash in anxiety over this. Feel like a newbie all over again. Will be seeing her PA in the next 2 weeks to get everything started and have my first injection. Trying not to think I'll have terrible SEs again, but given my history, I think my odds are leaning that way. All I can do is give it a shot....no pun intended but chuckle all the same.
I can't remember if any of yall have gone the Ovarian Suppression + Arimadex route, if so, what tips would you give me? Or just tips for Arimadex as well?
Thanks in advance everyone. Hope you all are able to have a lovely weekend, wherever you may be.
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Oh and LPL -- if you or others are interested, I ran across this article that summarizes imaging guidelines for cancer patients. There's a very handy table that outlines it pretty succinctly.
Imagining Surveillance After Primary Breast Cancer
"Most guidelines do not support the use of whole-breast ultrasound in breast cancer surveillance. Regarding breast MRI, current data suggest that, for selected women with a personal history of breast cancer, surveillance MRI may have cancer detection rates comparable to those of high-risk women with genetic predisposition to developing breast cancer [59, 109–111]. More specific characterization of breast cancer survivors who may benefit from supplemental surveillance is a critical current knowledge gap. Currently, most guidelines recommend surveillance MRI only for patients who are also at high (> 20%) lifetime risk.
Patient, tumor, imaging, and treatment factors may contribute to a higher risk of developing an interval second breast cancer. Current evidence supports consideration of these factors when developing patient-centered surveillance regimens. Additional studies are needed to more definitively identify strategies for specific subgroups of breast cancer survivors.
For the woman in the initial clinical vignette, a postmenopausal woman with a personal history of a T1aN0M0 breast cancer with favorable prognostic factors and molecular subtype (luminal A) and no additional breast cancer risk factors, the evidence supports annual surveillance mammography without supplemental imaging."
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Spoonie - I'm on OS/AI. I'm not sure how much advice I can offer you. My SE's have been minimal. I had fatigue when I started and some insomnia, both of which have resolved, and have been having hot flashes since chemo which continue still on OS/AI. Dress in layers and sleep with a fan, I guess? Also, there is a lot of anecdotal evidence indicating that women who are very active do very well on AIs. I'm a trail runner and will do just about any outdoor activity I can and the only SE I'm still having is hot flashes, which are really just an annoyance. The dreaded joint pain hasn't been a problem at all. Back when I was having insomnia, I was always able to sleep if I did a strenuous workout during the day. I find red wine aggravates the hot flashes but I pretty much quit drinking a couple years ago anyway.
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Hi Everyone! I'm so so happy I found this forum. I'm reading and trying to catch up with everyone. I'm 68 and my info is in my bio. I'm almost finished with radiation, 4 treatments left! My MO wants me to start on Arimidex the day after radiation stops. I really don't want to do this because I have so much angst over the side effects. I am not someone who takes meds unless is absolutely necessary. My MO is really pro-AI even though my onco scores are low. I realize that it's because I have a low score that makes this a hard decision. I'm active and don't want a drug to interfere with that. I'm not sleeping well with this decision looming. And my husband & family are concerned.
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Congrats on being nearly done with rads, giggs!
I can't take any of the AIs because I have osteopenia and already broke a bone. So my MO wants me to take tamoxifen. Like you, I'm very strongly leaning toward the no thanks side. I don't have an Oncotype score but do have a low risk per the Mammaprint score.
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Thanks edj3. I also have osteopenia, which was a surprise. I can't take Tamoxifen.
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giggs My AI has a super important place in my treatment plan simply because I'm ER+, and it had nothing to do with oncotype score, for me, said my MO. Being on this for 5 years lowers my recurrence risk hugely.
My side effects are very minimal. I felt sleepy for the first week or two, then that went away. Joints are just a slightly bit stiffer than before. Hot flashes are rare, and more like 'warming moments.' I do exercise every day, which has helped enormously. As I built up strength, the joint stiffness has definitely improved.
There's a thread on this site called "Doing Well on Aromatase Inhibitors." There are many women who are really doing fine. My doctor urged me to try for a few months, and see how it went, and it's going very well.
https://community.breastcancer.org/forum/78/topics/854403?page=36#idx_1061
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giggs—my BS told me that, in my case, the AI gives “the biggest bang for the buck.” When I use one of the online predictor tools, the AI is more important for preventing recurrence than chemo or Herceptin. I think most women, even those who ended up stopping it, would tell you to at least try. You owe yourself and loved ones that. Many of us started every other day for a few weeks and seem to have relatively minimal SEs. The anti-hormonals are a very important and effective tool to help ward off the beast.
(hapa—many people tolerate white wine better than red. If you have a big something coming up and want to treat yourself. . .
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Giggs, welcome!! The women on this thread have taken many paths with AIs and tamoxifen, but there's so much support and respect here.
For both Giggs and Spoonie: many on this thread started their AI gradually. I started at the full dose right away, and it worked out fine. Exercise will help with any joint pain. My feet are stiff when I first get up. By the time I walk to the bathroom, it's gone.
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Hi all...
I had bilateral Mx in February 2018 with final reconstruction in June 2018...I turned down the tamoxifen because my family history of uterine cancer… my mom had it and recovered but my 58 year old cousin died last year from uterine cancer.
Then in April 2019, I had a breast cancer recurrence! Ugh! such a low percentage chance of that after bilateral Mx. So now I am on my 19th of 33 radiation treatments. I have been handling radiation well and have been biking to my treatments each day which has been wonderful I feel energetic and no major skin problems, trying to stay positive and instead of being bitter I'm trying to be grateful that at least there is a treatment for me, thus radiation
Then I need to start on tamoxifen in July sometime ...dreading side effects from that. I do know some women who have been on it with no issues. Is anyone on this thread not expecting major issues ?
And I am in the process of scheduling a hysterectomy using the da Vinci method… Then I won't have to worry about tamoxifen giving me uterine cancer... some days I am totally comfortable with that decision and other days I wonder why I am getting another major surgery when nothing is wrong at this point with my uterus or ovaries and I don't have heavy periods or issues. my last period was July 2018 but then I had some spotting in April 2019 so they did an FSH test follicle-stimulating hormone to see where I was in menopause and I'm nowhere near through it so I have to go on tamoxifen and not AIs.
Anyone have a DaVinci hysterectomy amd do ok with it?
Hang in there everyone
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Barbjc I was on Tamoxifen for 5 years, age 46-51. I had some hot flashes, and they were annoying, but not HORRIBLE. I got vaginal dryness, and it was solved w/ Estradiol cream and lubricant, like coconut oil. I did fine on Tamoxifen. No problems, just these things I've mentioned, which I'd call solvable annoyances.
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Welcome Barb and Giggs! I'm sure you will find tons of support and respect here, no matter the path you're on, at least that's been my experience with these lovely ladies. It's like a second family!
Barb -- Just want to say you are a tough cookie! Crappy odds with a recurrence! Thankfully it was found sooner than later and it seems you are looking at it as positive as you can. Awesome. You've been through alot and you are still plugging away. Congrats on that. It can be very hard to keep going each day knowing there are more mountains to climb ahead. So kudos to you!
I know you mentioned that you are going to be having a Da Vinci Hyster soon. I'm not familiar with that but I guess I'm assuming that it removes ovaries and uterus lowering your recurrence risk dramatically.
Can I ask you if your MO gave you options to think over or try before going a permanent route? Everyone is so different, and I'm not sure of your age, so that can make tons of a difference in treatment options offered. The only reason I ask, is that I'm 42 now, and my MO asked me to try Tamoxifen first (I know this isn't an option for you w/o surgery) and when I couldn't handle that, she laid out a few options for me ( OS + AI and/or surgergy if I tolerated that well). Her reasoning for not going surgery first is that given how I handled Tamoxifen, if I handle the OS AI route poorly as well, permanent Meno would not be a fun trip for me, dramatically decreasing my quality of life, and I would most likely have severe regrets. She wants me to avoid that if possible.
With your family history of Uterine cancer that's obviously a huge factor for your treatment options if you're planning on taking Tamoxifen, but has anyone talked to you about whether or not OS + AI's are an option? I'm not sure about the risks of uterine cancer with that route but I do think from what I've read that OS AI actually has studies that show reduction of recurrence risks in general when compared to Tamoxifen alone.
Anyway, that's alot. Sorry if any of that is prying, surgery is a permanent decision. For me, it seems helpful to have a first step to try to see how my body reacts and what happens with my quality of life before I go that route.
Wishing you the best on the road you travel. We're here to cheer you along and offer hugs when needed.
Some good threads regarding hormonal treatment, in case you haven't seen them already are :
Bottle o' Tamoxifen
Doing Well On Aromatase Inhibitors (AIs)Has Anyone Felt Better On Tamoxifen?
One note, if you do go with Tamoxifen, please be aware of this (Tamoxifen and fatty liver disease) and ask your MO/PCP to monitor your liver along the way. For some reason, this does not seem to be the standard of care and most of us, I believe, had to ask for this from our team.
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Benefit Seen With OS + AI
"In the new analysis, for women with the highest-risk breast cancers -for example the younger women with multiple positive lymph nodes, large tumors, high tumor grade—who received only tamoxifen, approximately one in three of such women had experienced a distant recurrence by eight years. High-risk women who underwent suppression of ovarian function and were treated with exemestane had an increase of 10 to 15 percent in freedom from distance recurrence. "That's a big increase, and women in that situation might decide it's worth it," said Regan.
At the other end of the risk spectrum, women considered to be at low risk had a 96 to 97 percent rate of freedom from distant recurrence regardless of which endocrine therapy they received, Regan said."
https://medicalxpress.com/news/2018-06-ai-ovarian-suppression-yields-benefit.html0 -
Thank you so much. I have been feeling so alone in making these decisions. The support here in this group is so wonderful.
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Ingerp Thank! Love the wine analogy, something I can relate to!
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Feeling alone in the midst of this is so hard, Giggs. Been there, doing that at times too. These ladies sure help out though. So glad you found us! Not alone anymore. Good luck on your final 4 RADs treatments. How are you holding up? Hope you haven't had a rough time the past few weeks. Have you found a few good threads for Arimadex yet? If not, here's a few I've been following, since I'm switching to OS + Arimadex soon. Maybe they might be helpful for you in making your own decisions? In any case, please keep us posted on how things go as you finish RADs and start in on your AI. Wishing you hugs and healing.
For Arimidex (Anastrozole) users, new, past, and ongoing
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Oh, ladies just saw this thread: Breast MRI Explained
VERY interesting reading how breast MRI's work and are the images show up for the techs, and are read.
DJMammo is just the best for sharing all the info he does on these boards. Anyway, for anyone that will be getting MRI follow-ups, this may be helpful reading. My next scan is a Breast MRI in Oct so this is in my neck of the woods so to speak.
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giggs- Welcome and congrats on almost having rads behind you! I know as others have said that some women have had success with slow intro of their hormonal therapy. Is this something you could talk to your MO about? I also got permission from my MO to give myself a little time for my body to heal from rads before introducing another treatment. I understand the anxiety behind this decision and you will make the one that is right for you. You can always stop the med if SE's are not tolerable.
HikingLady- Here goes a personal question
Who prescribed your estradiol cream? How much and how often did you use this while on tamoxifen? I am just starting to notice some vaginal dryness does it get progressively worse? As far as the coconut oil, is it just the stuff you buy in the grocery? How often did you use that? Can you tell I am a bit worried about my vagina becoming a desert !barbjc- I am sorry you have had a recurrence. It sounds like you are getting through rads well, and I am super impressed that you are biking to your treatments! Spoonie added some great links and maybe you too can talk to your MO about a slow intro so maybe your body can adjust well to the tamoxifen.
LPLLibrarygirl- So glad your infusion went well with no SE's, YAY for that. Good thoughts coming your way for your upcoming mammo!
Spoonie- I am sending healing thoughts for continued good progress on the eye issue
And all the best in trying out OS. You are a rockstar and I truly hope you can tolerate the treatment!I did call and talk to my nurse navigator about my concerns with my MO visit and the fatigue I am having. I asked if it was normal to already have just yearly visits with my MO. She said that yes, that was sometimes the case. She was very sympathetic and I appreciated her hearing me. She said she would be happy to get me in with my BS (that is the office she works out of) to discuss the SE's I am having. She suggested another appointment with the MO but maybe schedule it with his PA and see if that provider is easier to talk with. She also said it would be no problem for her to set up a second opinion, like all of you have shared she stressed that it is important to have a good relationship with my MO. I am strongly considering the second opinion I just need time to work through the decision. I was gifted anxiety with this cancer "experience" and decisions seem to be harder sometimes. I will say that the effexor has cut down on my night sweats by about 60% and I have been sleeping more than 4 hours at a time, YAY!! Unfortunately that has not improved the fatigue. When I picked up my last RX it is a different brand and I started those a couple days a go, maybe a brand change will make a difference. I have started back up to the gym because I know how important exercise is, and hoping that will help. Thanks for all the support and encouragement!
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