Has anyone quit or reduced dosage of the hormonal therapy?
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JRNJ, the places I get scans don't write any TI-rad terminology. Below is the description of my US scan from June last year:
There is a 1.6 x 1.0 x 1.5 cm nodule in the mid-right thyroid lobe which appears spongiform and mildly hypoechoic with slightly ill-defined margins, and no definite associated echogenic foci. Internal vascularity is demonstrated on color Doppler interrogation.
I was so nervous and I even asked the doctor who performed the biopsy and he said it looks 50-50 from the biopsy tissue he took. However, the biopsy came back as benign. I need to follow up every year.
You may have the same type of nodule(s) as mine. They look very suspicious but they are benign. My MO told me that less than 5% of thyroid nodules are cancer. Many people have them and don't even know. If you don't mind sharing, how are your nodules described?
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Mine are different, they are solid, not spongy. I found the scoring system based on those descriptions at : TIRADS ACR : What Radiologists need to know | RadioGyan.com. Based on this scale mine sounds worse. Mine was scored in the report, I didn't calculate it myself. My breast cancer was bi-rad4.
Nodule #1 Location: Right mid to lower pole Size (mm): 20 x 13 x 15. Composition: Solid Echogenicity: Isoechoic Echogenic foci: None Margins: Smooth Shape: Wider than tall TI-RADS Category: 3
Nodule #2 Location: Left upper pole Size (mm): 8 Composition: Solid Echogenicity: Hypoechoic Echogenic foci: None Margins: Smooth Shape: Wider than tall TI-RADS Category: 4
Nodule #3 Location: Left midpole Size (mm): 7 x 4 x 6. Composition: Almost completely solid Echogenicity: Hypoechoic Echogenic foci: None Margins: Smooth Shape: Wider than tall TI-RADS Category: 4
IMPRESSION: Right mid to lower pole solid nodule Recommendation: Fine needle aspiration biopsy.
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A smooth shape is a good sign. Solid doesn't mean it can be cancer and biopsy is recommended once we are diagnosed with BC. In my case, US showed blood supply inside the nodule and this made the doctors nervous.
Also, I believe I was taking too much calcium (or vitamin D), messing up the thyroid. I had high calcium levels in blood tests as well. You did have a stone, any chance you are taking anything to create or flare-up thyroid nodules or create stones? Sometimes are the little things generate big worries.
I hope you can get some sleep.
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Kamboka - Just wanted to say that your word "incurious" really fits the bill. While I understand the doctors being that way on one hand, it can cause problems on the other. Sometimes I think my oncologist is really just a "glorified technician" if you will, who never wonders about things and just goes through the prescribed motions. I know that doesn't sound nice, but I also know she is just doing her job, and that her job isn't to indulge all of my "what about this, what about that" whims and curiosity necessarily. She's actually a really nice person. My surgeon on the other hand did entertain some of my "wonderings", but he has unfortunately retired. Thanks very much for your thoughts and input - they were helpful.
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Reducing dosage - has anyone done this even though their oncologist did not want them to? Did you tell the DR? I was taking afinitor (10 mg) with exemestane for about 1 1/2 months, bad mouth sore, then scalp sores. Oncologist offered a mouthwash for mouth sores, and briefly mentioned reducing dosage for scalp sores. When I started radiation I was told to stop Afinitor. Mouth sore immediately cleared up, and eventually the scalp sores went away. Now that radiation is over, my oncologist wants me to resume Afinitor. I called the office about reducing Afinitor dosage (split the pill), and was told "NO!". But I am splitting the pill, so only 5 mg/day. Scalp sores seem to be returning. I see my DR in 10 days, and will probably confess to splitting the pill, not looking forward to an argument.
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JRNJ, I'm so sorry that you have something else to worry about! I hope you get your biopsy scheduled quickly to put your mind at ease one way or another. With your history, it is good they are recommending biopsy, or you would never be at peace.
Bluegirl, I am off my AI without my MO knowing. I will be talking with him next month about it. It is my choice after all. I know it's risky, and I may one day regret it, but choosing between a drug making me sick every day right NOW vs the low possibly of cancer making me sicker in the future is not an easy choice to make. I know your situation is different. In your situation I would have more incentive to fight through the SE's, as terrible as they sound. I feel for you and hope your MO is willing to work with you to find a compromise at least. I agree with ThreeTree that it would be nice if MO's could tailor treatment to the patient, but I suspect it's a big CYA thing, and they don't want to be caught in the situation where they are liable for giving out the wrong advice. So they stick to the required script and treatments. It's sad that society has put the doctors in that kind of predicament.
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Bluegirl, I took them for a few months while my surgery was deferred last year due to COVID. Side effects sucked. I opted not to go back on them afterwards. MO was not willing to work with me and given my relatively low recurrence risk (3% if taking AI 6% if not) and age (62 at the time) opted to play the odds and enjoy better QOL. Since MO doesn’t do anything that’s not the orthodox ‘standard of care’ so no scans, bloodwork to measure or check anything I don’t see her any more, really no point so why she’ll out the co-pay. If I have any symptoms my internist will order any tests I request.
JRNJ, really hoping all turns out well with the thyroid nodules! So sorry to hear you have more crap to deal with
Abigail
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JRNJ Im sorry the you have this extra headache going on with figuring out you thyroid issue. Im hoping the best regarding the biopsy results. Prayers up. To answer your question about how I feel while Im breaking from AI's and moving onto Tamoxifen. I honestly feel a bit more like myself, granted I still have a monthly does of Lupron in me right now. Once my Lupron wears off Im hoping to see an increase in energy.
Bluegirl and what just happened I love that you listened to your body. Its really hard to manage these SE's and remain faithful on this medicine.
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Blue Girl - I take my letrozole every other day instead of the every day dose the dr prescribed. I told her that's what I'm doing and she doesn't like it, but seems to have accepted that that's what I'm going to continue to do.
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Jinx27, thank you for sharing the link of ingredients of medications. So helpful!
ThreeTree, under the Femara website, says that we can take letrozole every other day if it damaging for the liver. Why can't we all take it every other day? Also, I feel that letrozole increases inflammation and Motrin (as anti-inflammatory) seems to help with joint pains.
JRNJ, how are you doing today? Please stay away from Dr. Google.
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Lilly - I've seen and wondered about the same thing re the every other day and people with bad livers. I just think there are several pieces of this puzzle that just don't fit.
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ThreeTree, we are treated as "one size fits all". My understanding is that letrozole removes estrogen since estrogen fuels the cancer cells that are ER+. Basically, removes cancer's food. However, there are ER+ cells that find a way to still multiply and mutate even with letrozole and that's why this medication cuts the recurrence risk up to 40% and not 100%. Since there are no blood tests to figure out if this medication works or not, we are taking our chances. It is sad how many years of research and how many trillion of dollars are spent on cancer cure and there is not a blood test to see if the medication is working. My MO said the letrozole does wipe out the estrogen and they don't do blood checks.
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TO all: I just read an article in a dental hygiene magazine promoting mastic gum as a caries reducer, relief of peptic ulcer and to reduce liver inflammation. I was more interested in the liver aspect as I know I drink too much. I am going to try to find out more info. Comes from a mastic tree grown in Greece.
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PS. Going for a sono of the lump near my thyroid June 3rd. UGH kinda sick of tests and waiting for results. Sure I'm not the only one.
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Lily you are spot on, why are there no tests to see if the drugs are working? Im trying to focus diet/nutrition, lifestyle and exercise thats something I can control. Along with getting a metabolic panel done, liver checked etc. Its hard to when your tired all of the time from this medicine.
In the meantime I am going to take my Tamoxifen in small doses or every other day, my oncologist will have to deal. Its better than refusing medicine.
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Let us know how it goes KIDI919. Best of luck!
Jinx27, how many years are you going to be on tamoxifen?
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Lily I was told that 10 years of hormonal therapy was best for me because I had 3 positive nodes. I began with AI+OS and was able to stick it out from 2016 until last week. Had a convo with my MO and we agreed to Tamoxifen for the remainder of time.
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Kid1919, when you say, "afraid of changing when i can "live" with the SE," I get that. I'm on Anastrozole and have been for almost a year--after one month on Letrozole. I've gained so much weight in the year that I'm not happy. I also have joint pain, but it's minimal now and better than it was at the beginning. It's hard to know when to switch. I feel bloated all the time, have probably gained 25 pounds in a year, and sluggish due to the weight more than anything. I think I decided yesterday to go off for a month and just see and think. I have an onc appointment the end of June so I'll talk to him then and see how I feel. Hard to decide to jump to another AI that may actually be worse--but then again, it may be better. Ugh.
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JLBinPDX:I know... it's so hard to decide what to do. I hate the SE but what if I switch and they are worse?. Guess I can always switch back... Onco said when I started this it was up to me whether to take or not. I respect his opinion .... oddly I feel like my dx is not as bad as some so maybe I can go without. He said I can keep u alive to 100... I said I don't care to be alive that long. Maybe it's my age (64) this year...but when I read posts here where the ladies are so young i feel that at least i have raised my kids and have been blessed with 2 grandkids. My heart is heavy reading the posts but it makes me feel thankful for my own problems. My SIL has lymphoma so I am always worrying about her. WELL this way off topic but there it is
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Thank you all for the support. I really need some right now. Have that sinking feeling again. I think I am taking too much vitamin D. Primary had me on 50,000 units a week prescription, than I added calcium and vit C. When I told him I want to take less he acted annoyed. Before the kidney stone dx, he also told me blood in my urine "just happens sometimes", jerk. Meanwhile, the next day he refused to write me a prescription for the thyroid biopsy because he was reading the report wrong, even though I told his nurse I spoke to the radiologist (the report was a little confusing). I literally could not believe it, I was so fuming mad. I got into an ENT later that day and he wrote it for me, but I still won't have it til June 7th or later, they're booked. I've been so sick with worry, but trying to forget about it because you can't rush the process. Meanwhile the ENT says the lump in my throat when I swallow is not from the nodules. Really? Maybe allergies and is sending me for a throat swallow test, but they're booked til end of June. So frustrating.
KID1919, good luck with your sonogram. Keep me updated.
JLBinPDX and KID1919, I tried 4 so far, you can always go back if its worse.
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JRNJ, You have been through so much! I'm glad you were able to get into an ENT so fast. What kind of swallow test? If your thyroid gland becomes enlarged it can cause difficulty swallowing. Wouldn't nodules cause this? I have a goiter/thyroiditis that lately has been controlled with levothyroxine. When it is enlarged I feel like I have a lump in my throat. You need a new PCP!! My cholesterol went up because of menopause, less estrogen. One good thing about Tamoxifen, it has helped lower my cholesterol level. I do still take the pravastatin 3x a week m-w-fri. Thinking of you!
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JLBinPDX, I've had the weight issue too, so I understand your frustration. If it was just weight, that's one thing, but excess weight leads to higher blood sugar, blood pressure, heart rate, cholesterol, etc. It's worth trying another AI to see if it's any better.
JRNJ, I'm so sorry that you have to wait so long for answers, but kudos to you for self-advocating. I'm curious what kind of swallowing test your ENT ordered. I had a barium swallow test, which was normal, followed by a manometry test, which was also normal. I've noticed that drinking cold liquids seems to make swallowing harder, so I stay away from them now. You might try doing some experimenting and keeping a journal of when you have difficultly swallowing, what you were eating, etc. It might reveal a pattern that is helpful. My GI doc thinks that my esophagus is spasming, possibly caused by radiation damage. I also have a "crichoid bar" that food gets caught on sometimes. There are more tests that we could do, but I've decided my symptoms are manageable and if there is nothing major wrong, I can live with it. It's weird that the ENT dismissed the thyroid causing your swallowing problems so quickly.
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Whatjusthappened , Thank you for posting.....very interesting!
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Whatjusthappened and JLBinPDX "excess weight leads to higher blood sugar, blood pressure, heart rate, cholesterol" this is very true for me. I have elevation of all of these things, my GP wanted to put me on a statin because of my cholesterol, Im considered obese and pre-diabetic. Its a mess. Im also African American and really should not have any of that going on in my body due to my higher risk for heart disease and diabetes.
Thanks to these boards, I decided to muster up the courage to speak to my MO honestly, and told her that my GP was scared for me. She didnt hesitate and took me off of Arimidex and Lupron. We have now switched to Tamoxifen, just picked up my Rx today. I will be taking a break from all prescriptions for about a month will start back up with Tamoxifen.
Maybe have the conversation about switching to another AI and then if that doesnt work Tamoxifen....
To manage the side effects, Ive reached out to a functional nutritionist and a integrative oncologist (ND) in my area. My hope is to manage the side effects with supplements, diet, stress management and exercise. I hope you find a solution!
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Jinx27, good for you for speaking up! I do hope the Tamoxifen works out for you, as well as the nutrition and exercise. You're so young to have to deal with all of these issues.
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I agree Jinx27 is so young to deal with all this. I always thought tamoxifen is better suited for younger women. Let us know how it goes Jinx27.
JRNJ, I was also taking too much calcium and vitamin D at the time when thyroid nodule popped up. I still take vitamin D but 1000IU/day. Now in the summer I am even skipping it.
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JLBinPDXI hope everything goes well with you and your SE's. Lily and Whatjusthappened you all are too sweet, thank you. Ive learned soo much from these boards and folks like you
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I've decided to go off Anastrozole for a month. Towards the end of that month, I have an oncology appointment and will maybe find a clearer path. I plan to do more reading about these AIs. Honestly, I'm skeptical of all drug manufacturerers so I want some clear, difinitive data. Some questions I'm struggling with (and hope to find answers about):
- What is the percentage likelihood of reocurrance?
- If Anastrozole reduces it in half, half of what? If it's 10 percent down to 5 percent, I may stay off of it. If something higher, maybe I'll go back on or go back to Letrozole.
- Is a reduction of 50% of recurrence accurate? Is there enough data to support this?
- Half life? There are threads that ask about taking an AI every other day. Is that good enough? I question if there is even data to support this effect. No drug company wants you to take a pill every other day when they want you to buy twice as much and take it every day. Little info about this but I hope to find some.
- How negative are the bone reduction and cholestrol issues in compared to the benefit?
- Are there any effective, proven natural alternatives to AIs?
These are what I'll try to look into in the next month while my body takes an AI break. Any comments or links to quality academic articles are welcomed.
Julie
0 - What is the percentage likelihood of reocurrance?
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JLBinPDX such amazing questions for your oncologist. I had to do the same with mine and thats how we came to the conclusion to switch to Tamoxifen. Ask important questions! What I will encourage you to do during your break besides research is to really hone in on your nutrition, stress management and fitness. Maybe even seek out some professional help to get a nice eating/excerise plan to help lower recurrence if you dont have one already.
Im going to try to dig up some articles for you...
Regarding cholesterol: I experienced Hyperlipidemia on Anastrozole for sure, it could be controlled with a statin but thats completely up to you and what YOU want to do. Some patients are not interested in taking another Rx plus the AI.I think some folks have posted the same when taking Tamoxifen.
Lowering doses: Search on the boards for personal experiences with doing this, typically there are articles listed in some of those posts. Also, you can approach lowering your dose as a way to both control your cancer (which Im sure your Dr would like) AND for you to still have that extra security against recurrence. Most Dr's would not argue with you about a lower dose because you are still taking the medicine itself.
If you choose to take and AI or Tamoxifen you can re-introduce it in smaller milligrams. This has been done with Tamoxifen and proved to work just as well. https://breast360.org/news/2020/07/31/could-i-try-a-lower-dose-tamoxifen/, https://www.webmd.com/breast-cancer/news/20181206/lower-dose-tamoxifen-works-as-well-as-high-dose Find out if its the same for AIs.
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My oncologist has allowed me to drop down to 10 mg of Tamoxifen every other day compared to the 20 mg I was on daily. His stance was that it's better that I do some hormone therapy than none at all. With the 10 mg every other day, I experience almost no side effects. No hot flashes or achy joints. I feel almost like myself pre-cancer treatment. His thought process was that we needed to work together to find a balance to also give me a good quality of life.
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