Why I don't Take Tamoxifen... and if I did...
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- Опубликовано: 9 дек 2023
- Don't take my words as medical advice please! This video is JUST my story. Not advice. It's about the reasons that I haven't had to engage with endocrine therapies like Tamoxifen or Aromatase Inhibitors yet in my recovery from breast cancer. I actually misspoke in the video about the chance of my recurrence--the chance was at 2% BEFORE I had my second mastectomy. My chance is much less now that I have had my second mastectomy. As promised, I'm going to list here all of the reasons that my wisest doctor from UCSF told me that I didn't need to take any endocrine therapy:
My lesion size was 2mm (we don't have tumors in Lobular Cancer).
My mitotic score was extremely low. It was listed on my path report at "1" which is the lowest score.
My proliferation markers were also low, at "-1".
Progesterone positivity is key for lobular. Since my PR positivity was at 100%, she said that I have one of the best possible pathology profiles for overall survival (thus Tamoxifen isn't useful).
Other things that Dr. M told me that I failed to mention in the video:
Lobular cancer is more sensitive to hormone replacement therapy and alcohol use than Ductal is. I have stopped using both, completely.
I became a nutritionist soon after my first scans showed shadows ten years ago, and I credit my lifestyle for keeping my cancer growth low, but of course there's no way to prove that. Exercise is showing to be even more important than nutrition and my fitness was not great during that ten years! It is now.
- Related Videos:
My other video about having Lobular Cancer: • My Breast Cancer Journ...
The playlist of my entire Mastectomy Story: • Mastectomy Story
- Links:
The breast cancer index is found here:
www.breastcancerindex.com/
The Lobular Breast Cancer Alliance (LBCA) is the best place to find the work of expert ILC researchers like Dr. M: www.lobularbreastcancer.org
The best book I've found on how estrogen works is "Estrogen Matters" and here's a link to my favorite independent bookstore if you'd like to buy it there: www.powells.com/book/estrogen...
My professional RUclips channel is at / @seekingdeeperhealth
The land where I shot this video was once Kalapooia Tribal land. Join me by contributing to and learning from your own local indigenous farms here: www.soulfirefarm.org/get-invo...
NOTE: This description may contain affiliate links to products I enjoy using and have tested for quality. Should you choose to use these links, this channel may earn affiliate commissions at no additional cost to you. I appreciate your support!
#seekingdeeperhealth #nwnutritionist #mastectomy #breastcancer #doublemastectomy #lobular #goldilocksmastectomy
I had double mastectomy and radiation ended 9/25/23. I have tried anastrozole and letrozole. Letrozole started out fine, but two months in, severe fatigue, memory loss,dizziness and low BP. I stopped taking them a week ago and feel pretty much back to normal. I will be speaking to my oncologist. I’m sure he will want me to try another version of AI. But, I’m not so sure if I want to live miserably for the next 4.5 years.
You are not alone. It's a LOT. In many ways it's the worst part of the journey. I will say that some women have found that a lower dose or a different brand of AI will act considerably better. Be sure you rule out every option so that you can live with this decision long term. The most good is done by AI's in the first couple of years, so you did a lot of good just by trying them. You have done yourself good in spite of how awful it feels. Chin up!
I'm in the same situation. I took anastrozole for 6 months and I was miserable with similar side effects to yours but also with severe bone and joint pain. Then 6 months ago my oncologist switched me to Tamoxifen. The first 6 weeks were fine, and gradually side effect I had with anastrozole before came back, plus severe hair loss. I'm in constant pain and I have decided to stop with hormone therapy because I can't live like this for the next 4 years. I have an appointment with my oncologist in 2 weeks. That's when I'll inform him of my decision. Good luck to you!
Hello from Pico Rivera California.I had my double Masectomy in August of this year. I had DCIS. I too did not need any tamoxifen nor radiation nor chemo I thank my God that they caught it early . Stage zero . I’m glad you’re doing good. I am too I’m back at work too. Happy Hollidays to you and your family.
Thanks Cynthia! I haven’t heard of Pico Riviera! Is it in So Cal? I’m up in Oregon.
@@estrogendiaries Good Evening …. I’m between Los Angeles and Whittier. Have you ever heard of the Whittier earthquake years back? I love reading your posts . Thank you for all the info you gave me from the beginning. I too wanted flat closure but was denied by my surgeon. She flatly made it up her decision to do what she wanted. It’s a sad thing. But I let it go and all I’m grateful is tobe alive and well. I’m 61 . God Bless you and I will continue watching your vlogs.
God bless you too Cynthia! Your attitude is commendable. I hope you will report your surgeon to the notputtingonashirt web site just in case they are recommended on the flat surgeon directory. My surgeon was on their directory and I made sure they took her off after my experience of being left with extra skin twice. There are LOTS of Flatties in SoCal and we have a retreat in Palm Springs each year in October. Hope to see you there next year! Check out flatretreat.org!
Hi, I had DCIS discovered, very small during a breast reduction, since it was not found in a controlled way, I opted for a bil mastectomy. Went with my instinct. My mammogram was clear prior to the reduction. Well, the tissue removed from bil mastectomy showed another DCIS in rt breast, 2mm, but a 4mm ILC was found in the left breast as well as atypical Lobular dysplasia in both breasts. I did have an SGAP fat flap reconstruction with mastectomy. Just had 2nd phase revision of reconstruction, 7 wks ago. I am almost 7 mos from bil mastectomy/reconstruction with immediate SGAP. I am menopausal, thin, active, was on a little bio-identical HRT, estriol and progesterone topical. Not Estradiol. My pathologist said my ILC was stage 1, Grade 1, well differentiated. Oncotype DX score low as well as Ki-67 was low. I have chosen to not take an AI. My oncologist is being awful about it. I had always thought progesterone is protective of breasts? I had first child at 24, next at 28, and third at 32, breastfed all. I have been so upset about this. I thought I was so low risk. I do wonder if my healthy lifestyle of organic eating, exercise, little alcohol helped mine to not be so large and aggressive. I do miss what little hormones I was on, I do use vaginal estriol, compounded. How did you get past the scare factor, I wish I could find a compassionate dr. Bless you for sharing your story. I never knew so many types of breast cancer existed. I did the cancer math calculator and I too have a low % of recurrence, but my med onc thinks All BC patients shld be on hormone blockers. Concerned for my 2 daughters in their 30s. What natural supplements do you use instead of these hormone blockers? Thanks again.
I eat a table spoon of organic miso daily. I made a video about this on my other channel called Seeking Deeper Health. (I’m a nutritionist.) Pomegranate is also a good estrogen blocker, but high in sugar so I only use a little to sweeten my sparking water!
Thank you for the reply. I will look at your other channel too. @@estrogendiaries
There is nothing....have to rake day by day...there is. Unser Vater im himmel. Und christ....eat drink.dance walk...feel. in moderation....or? On your birthday....next generation will.hopefully know more.....we only have ca. 80. Right now ...its okyyyyy
I had surgery and chemo. Nothing additional was mentioned to me. I’m just thankful that a mammogram caught my cancer. Thank you from Mississippi 🎄💖🌟⭐️🎶
Which surgery, my doctor is suggesting lumpectomy. But,is it pain afterwards and forever)
@@r5ndom551I had a mastectomy. I healed up perfectly and I have no pain whatsoever. I chose a mastectomy because I didn’t want to worry about cancer reoccurring.
I was diagnosed with lobular breast cancer in 2021. My tumor was grade 1. Grade is determined by the nuclear score, the mitotic score, and the tubular score of the cells in the tumor. Lobular breast cancer can be grade 1, grade 2 or grade 3. Lobular breast cancer does lack e-cadherin. The lack of e-cadherin is what distinguishes lobular breast cancer from DCIS or ductal breast cancer. I am glad you don't need to take tamoxifen or an aromatase inhibitor! I wish you well in your healing journey.
l.
I had a DCIS diagnosis in 12/21 followed by a breast-conserving lumpectomy in 1/22. DCISion RT testing followed and showed that radiation would be of very little benefit with regard to recurrence, so I got to "skip" it. I was, however, advised to take tamoxifen since I'm post menopause and already had osteopenia. All went well, though I slowly lost 20 lbs unintentionally and no one could seem to find the answer as to why - literally saw multiple specialists - endocrine, gastro, pulmonary and so on. Lots of tests and nothing abnormal. I chose 5 mg. low dose tamoxifen based on my oncologist's reco and a positive study out of Italy. All's been well until my annual mammogram on Wednesday which returned as "abnormal" with a focal asymmetry very near the original spot of DCIS. I go back for a f/u mammo and US next week and feel like it's deja vu all over again. I'm weary. Should I have had a mastectomy? It wasn't advised then. Was my stereotactical biopsy harmful? Who knows. I am disheartened and yet glad to have found your channel. I'll be following. Thanks
I’d love to get the Italian study from you. Yes, I too suspect the my biopsies could have been harmful and I’ve only found more evidence of such at the recent breast cancer symposium this month in San Antonio. I think what most surgeons wd say is the main thing is, that you caught it in time and I believe that’s true, and likely to be the main thing to focus on now. You can get a mastectomy now, and it’s very likely that no further harm will be done except the trauma of this time of uncertainty. This is why they say a lumpectomy is as good as a mastectomy-they find that it’s almost always caught in time… I also have wondered if having breast tissue gives the cells a place to land, rather than taking to traveling? I suppose we don’t know the answer to that yet, but it’s a good question. Peace be with you, as you wait for this to be sorted out.
Yes I have wondered about the”Boobie trap” idea. Maybe this becomes the catcher and a spot where it can be seen. Second guessing ourselves does us a disservice. Kindness on our journey.
I don't buy the lumpectomy bit. I opted for a double mastectomy with immediate reconstruction b/c what we thought was just micro-invasive DCIS. Only on one side, but some pre-lobular cells biopsied on the right. Thought this was just a plastic surgery deal. Chose the best in DIEP FLAP in San Antoinio - PRMA. But - when they got the tissue out and sent to path they found HER2 triple positive that was not detected before. So many of these cancers can be small and undedctible in dense breasts. We are so glad we did the surgery. That having been said, I did have to do chemo. Now they want me to take Tamoxifen. I pushed my doc to be honest about my stats, Originally they said with full treatment was 2% recurrence, I wanted to know how much the T would change that. I had no lymph involvement - and the side effects of T is bad. And research shows that we need Estrogen - like you say... he admitted after going to conference (he told me they couldn't break it down that way) that the Tamoxifen would increase my recurrence rate by only a few percentage points. It would be 4-8% I will try the tamoxifen for a bit - but will stop right away if my quality of life is worse in anyway. That rate is lower than the general population's risk to get BC in the first place. Thanks for giving all this information. @@estrogendiaries
I completely regret taking tamoxifen. I started w 20mg, went back to oncologist asked for 10mg instead which was the lowest dose available (Ive never been on any meds other than the occasional pain reliever), I took for 3 years and now im looking at possibly uterine cancer...im scheduled to see a Gyn oncologist but my regular Gyn was pushing hard the removal of my uterus and ovaries...i was like, absolutely not until we do more testing to see what it is exactly. My oncologist gave me referral for an MRI. How did I go from i have the lowest DCIS which i could have monitored instead of Lumptectomy to now a hysterectomy???. I agree w you...we need to push for greater clarity if meds are truly needed or is it simply a "standard of care". I wish i would have known 3 years ago about "All Cause Mortality ". Knowing the "all cause mortality " for any surgery or medication we are about to consider should be known to all patients. I've only seen a couple of ur videos but will definitely see more - im hoping youve shared/ covered the difference between "standard of care" vs knowing your Specific "all cause mortality".
Those of u considering tamoxifen Please DON'T let my story scare you, my intent is to Encourage u to push harder in what is appropriate to you! You need to clearly understand the risks...those risks will be different among us and how likely are they to occur in your "specific " situation.
Yes! The problem with mortality measures in studies is that many studies don't even follow patients long term. The studies are designed to justify drugs for the short term and not for us as patients over the long term. This sounds cynical but it's just the reality. A really good book is "The First Cell" by Azra Raza.
Hi, what other meds could you have taken other than tamoxifen? Are you ok? What were your results? If your ok w telling me.
What is all cause mortality?
Totally agree.❤❤
Thanks!
Love your channel and wisdom. What podcasts do you recommend on the topic of breast cancer?
I love the following podcasts: The Burn/Wildfire Magazine; Upfront About Breast Cancer/BC Network Australia and Breast Cancer Stories. And these are the podcasts that I’ve really liked some episodes but not others: Breast Cancer Conqueror, Your Killer Life, Breast Friends Cancer Support Network and Flat is Where it’s At. I’m hoping to have my own podcast later this year, so let me know where the holes are! I’m hoping to fill them….
Thank you so much.@@estrogendiaries
@@pjm3011 And I'm starting my own podcast soon! Stay tuned!!!
Can’t wait!
That's interesting what you're saying about lobular... I was diagnosed with invasive breast cancer (have both invasive lobular and invasive ductal) but they are giving me a grade of 1... I have my DMX (both) scheduled for 1/3/24) and I guess we'll see if they change my diagnosis after the path report comes back from both sides. Regardless of what they come back with, if any changes or course of treatment going forward, I already know that I will not do the hormone blockers, radiation or chemo, so there's that. Hoping it will go in my favor, but if not, I'm already to go forward with my decision either way.
@praeeo you are in my thoughts and prayers as you approach your upcoming surgery. I had DCIS in rt breast and then with mastectomy a 4mm ILC was found in the left, stage 1, grade 1. I too am not taking the hormone blockers. I am menopausal. Doing Integrative therapies. I did have a nipple sparing bil mx with immediate reconstruction using the SGAP fat flap transfer procedure at the Restorative Breast Center in New Orleans. It felt right for me. This channel has been a blessing for sure. Thank you @estrogen diaries.
thank you! ❤@@bchmom03 As it gets closer, I'm beginning to feel a little anxious, I will admit, mostly because the last surgery I had back in 2015 was a bad experience and left me with a little PTSD, if I'm being honest, about going back under... but I also feel different about this and the docs and staff on my case are wonderful, so I know God has me with good people. Thank you for the kind words and sharing, too. I appreciate you all.
@@bchmom03I would love to hear of your experience at the breast center in New Orleans. I’ve been researching them. How long did you have to stay in NOLA for recovery?
@@terib.7139 I was in their 20 bed breast hospital for 3 days. Excellent care. I stayed in the area 2 wks, because I had a nipple sparing dbl mast / SGAP reconstruction, and needed to wait on pathology from my breast tissue removal. That is when I got the news I had a 4mm ILC, stage 1 grade 1 found in left breast. I had immediate reconstruction using the SGAP approach, (upper back fat),because I am a thin woman and my abdomen was not suitable for harvesting fat flaps which is called a DIEP procedure. I had drains about 1 wk. It is a wonderful place. They filed my insurance for me. I am about a 4 hr drive from NOLA, which was handy. I did go over for follow up a cpl of times, due to living that close. The results are excellent. I am a retired RN.It is a challenging recovery.
Hi. I wasn't at the Breast Center in New Orleans, but in Sioux Falls, SD For me, they were great there and made this experience so much better. Great docs (all of my team) I was in the hospital 2 nights (could have left after 1 night, but just chose to stay the 2nd night)... Hope this helps. 🤍@@terib.7139
note if eating meat whether wild or no hormones, note that if it gives milk to a calf, has estrogen in eat
I'm blessed to have hunters in the family so I usually eat male meat, and hunting season is always opposite birthing season, so we are very well covered in either case.
My lobular was 14cm in length. I'm being put on these drugs now. I'm not sure what to expect. I'm dreading it though.
Please do give them (Letrozole and Anastrozole) a good solid chance--with that much cancer I think all docs would agree that you need these drugs. I recommend trying every brand until you find one you can live with, and if you have to stop, try a half dose, because trials on the half dose or three days a week dosing are looking promising. Also, the first two to three years of AIs are really crucial so just try to get to that three year mark if nothing else! You can do it!
Mine was multifocal. Two tumors. One at 4 the other at 2cm on left breast with spreading to the lymph. I stopped tamoxifen. Horrible side effects.
Same with me; no chemo, radiation nor Herceptin.
I had chemo. You must have had surgery without any medication.
@@Debra_Barron Yes, single mastectomy.
@@trishknight6983I had surgery and chemo. I am thankful that I went for a checkup. A mammogram caught my cancer.
@trishknight6983 no herceptin please what are you on currently that keeps cancer away.
2 mm or 2 cm?
2mm, so just a quarter of a centimeter.
You are your own doctor so don't see any doctor so you don't waste time.
It took some searching but I did find doctors who think in a way that aligns with my own inner voice and intuition. It’s tough sometimes but I kept going. Glad you have a strong intuition too!