Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hi Tigerlily! That's sooooo interesting, I think you're right, it's the positive nodes that make the difference. Although weird that in your case with no nodes, which is a much better situation overall, they would recommend chemo with a 21 oncotype vs. in my case with nodes, they don't. But I'm so glad you got through it well, and it's a little bit comforting that these tests seem to be really personalized. They are based on 21 genes they measure in your tumor so very, very specific. So that makes sense! And is reassuring that the test really is what it's supposed to be, very specific to your type of tumor in order to determine the best treatment path for you. Whew!
All - still haven't heard from my oncologist but I met with my primary care provider this morning and she's big on nutrition (was really proud I'd lost over 20 lbs since I saw her a year ago!) and she immediately ordered the liver enzyme panels for me and other blood tests for suger, WBC/RBD count, etc. We really do need to advocate for our own health in this. She's much more of an 'integrated' mindset than my MO so while I think he is good on letting me be fluid and flexible on my plan, she's the one that 'gets' the value of nutrition and exercise and will help me monitor blood levels etc. as I go through this. Ugh I hate the tests and scans but I guess in the short term it's good to be vigilant.
Current feeling LOL...
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Hi PebblesV,
Would you mind sharing what your primary care provider said about nutrition and some specifics on day to day? I am especially interested in her views on flaxseed and soy. I have been reading that they are good for you even for ER+ patients and we should add them to our diets in moderation.
Cheers.
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Ghostie, you and I have a similar diagnosis (I am not a doctor, nor do I play one on tv). My oncologist wants me to take an AI for three months to see if I can tolerate it or similar. It will reduce the possibility of recurrence by about half in my case.
I do NOT want to go through all this again. Actually if I get a recurrence on the same side, can't do repeat radiation so it's right to full mastectomy. So crossing my fingers that I will be able to tolerate at least one of the AI drugs.
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And now I'm depressed...
Overview From San Antonio 2018
https://www.drsusanloveresearch.org/blogs/overview...
"Now we understand that most, if not all, breast cancers have sent cells out into the blood stream way before we are able to diagnose the disease. Up to 40 percent of breast cancer patients have detectable disseminated tumor cells already in their bone marrow at the time of diagnosis. The fact that we can find these circulating tumor cells (CTCs) in the blood or disseminated tumor cells(DTCs) in the bone marrow at the time a person is first diagnosed with an early-stage breast cancer shows that what we have termed early detection is not really very early."I told my MO about this fact since I'd seen it in studies prior to when I met with her both times, yet she completely blew me off.
https://www.radiologytoday.net/archive/rt1214p1A.shtml
http://jnm.snmjournals.org/content/early/2014/09/04/jnumed.114.143297.short
This just goes to show you that even though our docs are doing their best, info is still coming to the forefront and we need to stay on top of it for our own sakes.
Sending hugs to everyone <<<<hugs all>>>>
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Hi Everyone, my first post. So glad to see this community! I am 67. Had lumpectomy October 18, started radiation December 3, 28 treatments. Finishing 3rd week and going so much better than I expected. I have redness now in specific surgical area but I agree about the cream--it makes a huge difference for me! A brief background: was doctoring at Mayo Clinics for past 14 months for other issues and way behind on screenings. Got mammo and "boom" cancer. DCIS stage 1, level 1. I couldn't ask for better oncology team. My biggest challenges have been my anxiety of the unknown each step of the way. Anxiety over mammo results, anxiety to have biopsy, anxiety over surgery prep, surgery and radiation. So far, God is good! So, ladies, I now have anxiety over Anastrazole that I will start later January and side effects. DEXA showed osteopenia so my doctor increased calcium and Vit D. I enjoy a quality love life so that is the biggest SE that stresses me, and, well, joint pain and osteoporosis. So helpful to read all of your posts. Thanks!
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Hi All:
Also signing in. Mastectomy complete October 9, 2018. Right breast is fully expanded and implants go in January 8th. I escaped radiation and just barely escaped chemo with an oncotype score of 25. I do, however, start Tamoxifen the end of January and I am very nervous about the side effects. Ugh I hate the thought of loss of libido and sex drive. I am also afraid of headaches and fatigue. I feel fantastic now and dread what will happen to me once on Tamoxifen.
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Welcome SheWra - great name!
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SheWra, I guess we'll find out together huh. We just have to stay positive (and keep walking!)
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Hi everyone! I just picked up my first supply of Tamoxifen at the pharmacy and am feeling nervous about starting it. I'm glad this group is here! I need to read through the whole thread still, but just from what I skimmed, it looks like now I need to worry about my liver? Ugh! It's always something, isn't it? Plus, I live in Wisconsin, so my liver already gets plenty of action *cheers!*.
A little background on me: I was diagnosed in October, and I had a BMX with immediate reconstruction on 11/13. My recovery has gone splendidly; my surgeons have been thrilled and amazed with my progress. This past Tuesday (5 weeks post-op), I was given the green light to resume my normal exercise (running, weight lifting, etc) which has been awesome (even though my legs are a bit sore from running after 5 weeks of not running). I feel like now I can finally get back to my normal life... and I'm just so worried Tamoxifen is going to take away this great feeling. I guess I won't know until I try it, huh?
So.... wish me luck! I plan to take my first dose this evening.
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evily
good luck! sounds like everything is going well. I'm much older (62) but also a lifelong athlete so getting back to my exercise was imperative! I took longer, but 3 months after my BMX i was able to compete a planned hike/camping to the bottom of the grand canyon (and out!). I'm on anastrozole and so far have not felt the side effects. I remain wary, especially considering the issues that so many people have experienced. I'm glad this forum is available as well -- we can all support each other and share information.
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Hi all, I started Tamoxifen Dec 18, 2018. It's only been 2 days but so far so good. Had my baseline blood tests, liver enzymes (thanks to the info in this thread!) in the morning before starting Tamoxifen in the evening. Will have a bone density scan tomorrow.
My background; dx April 2018 with triple positive, chemo May-Sept (HER2+ so had chemo pre-surgery). BMX Oct 23, 2018 (with 2 stage reconstruction). Radiation will start Jan 7, 2019.
Thank you everyone for all the great info. Wishing everyone well. Hugs!
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Hey Really67 - welcome!
I hear you on the anxiety for this, that, and the other. And then some more on top of that. Story of my last five months
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Hi SheWra, Evily, and Really67.
Nomaddd, I met with the nutritionist at my cancer center yesterday. I asked a lot of questions, but specifically regarding meat, soy, hemp, flax, and alcohol. Keep in mind I'm estrogen positive (highly estrogen positive). The basics: less than 18 oz of red meat a week and no or limited processed meat. Soy is fine, but avoid soy isolate entirely (like high fructose corn syrup), i.e., avoid processed foods. However, I don't like tofu or tempeh so there is no reason to start eating it and some studies show the Japanese benefit is for those that have always eaten soy. About the only soy I eat is soy sauce and that's ok. Hemp and flax are ok, don't OD on the flax (my naturopath is advising against them). And sadly, alcohol, no more than 1 glass a day and try to do a lot less than that if estrogen positive. I asked if I can treat it like a "bank", so say 5 glasses a week but maybe 3 in a sitting. But they said research shows it does matter and no more than 1 a day if advised except on rare occasions. It was depressing. Good news is I'm already eating far more cruciferous vegetables than they recommend and berries every day.
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Welcome newcomers!
Really67 I agree with everything you wrote about anxiety and I think I have written similar comments as well. The stress of it all! I am still waiting for genetic testing results and it has been 2 weeks. I hope if the news is not good they will wait until after Christmas to call me. I am not sure how much more I can deal with right now. I am now signed up for counseling, in addition to Zoloft.
Spoonie, my MO was at the San Antonio conference. I won't see her until February but will ask her about the the distressing report. It just makes me worry again about my no chemo decision with a 29 oncotype. I guess I have to have faith that I can tolerate the AI and that it will work.
Re: eating healthy and exercising. There is a lot of talk about how having a healthy lifestyle (nutrition, exercise, body weight) will help with prevention of a recurrence. But what if you have been doing that all along? I know there is plenty of room for improvement but I feel like my lifestyle choices have been pretty good in the past and yet here I am...unless it's genetic. I haven't seen a nutritionist yet though it has been mentioned. Guess I need to say yes to that. I liked your post Tigerlily. Note: I just gave my docs some homemade caramel popcorn and it was made with corn syrup, from the no-no list. Oops.
Hope everyone has a peaceful night.
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LPLibrarygirl, I have the same thoughts as you re: nutrition and healthy lifestyle. I have followed a Mediterranean diet for well over a decade, mostly vegetarian (because that's what I like), and am very physically active. I have already met with a registered dietitian and she said I don't need to change anything about my diet or exercise. And yet, my genetic testing came back negative for ALL 16+ breast cancer genes. It's not genetic, and it's apparently not lifestyle... so, why? For me, I think it was just many many years of estrogen exposure. I got my first period at 10 years old, and have never been pregnant... so I guess that was enough to put me in this situation? Who knows? All I can do is continue to live a healthy life. *shrug* Sometimes it's just rotten luck.
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For those of us without an identified genetic component, there are other mutations that are unknown. I have gone my adult life thinking that I would not get breast cancer because the breast cancer that my mother had was estrogen positive. But let's face it, I got my hormone makeup from her. Add to that the fact that I started my period early, had endometriosis, had problems getting pregnant, took fertility drugs, never had a baby, and the list goes on. The most recent research shows that the only lifestyle change (or not change for those of you who are already very physically fit) is exercise. Physical exercise is proven to reduce the risk of recurrence.
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Hi everyone -
Just wanted to pass along these two threads to ya'll as I find them very helpful to keep up to date with new studies and so forth.
Breaking Research News From BreastCancer.org
https://community.breastcancer.org/forum/73/topics/785923?page=31
and
Breaking Research News From Sources Other Than BreastCancer.org
https://community.breastcancer.org/forum/73/topics/860294?page=26#idx_771
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LPLLibraryGirl - Please keep us posted on any new news you get about the conference when you see your MO. I'm super interested. Hope the appt goes well too! Good luck!
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Thanks for the links, Spoonie!
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Wow I missed a lot in one day!
Tigerlily - thanks for all the details in your post, I’m bookmarking! Super helpful.
Nomadd - my PCP is all about a plant-based diet. I haven’t adopted that 100% as I read the omega-3s that you get from eating fish can help counteract the risk of blood clots. This great site I found said flaxseed and soy are recommended for breast cancer in moderation (click the links for all the reasons why):
https://foodforbreastcancer.com/amp/foods/flaxseed
https://foodforbreastcancer.com/amp/foods/soybeans
Egregious - I know what you mean re: not wanting to go through this again. Same here. Along with the medicine I’m going to try and do everything I can from a nutrition and exercise standpoint to prevent a recurrence too.
Spoonie - re: the article you found, if it makes you want to take some sort of hormone therapy, have you thought about an option that’s not tamoxifen if you wanted to take something? Seems others on this board that are premenopausal like us are doing luprone and AI as an alternative. Maybe that’s an option? If you are still feeling you don’t want to take anything, check out Suzanne Somers did it and succeeded! She did the surgery and radiation like you and declined chemo and tamoxifen. 17 years later she’s thriving and cancer free.
Really67, shewra, evily and van2018 - welcome!
Really67 and shewra - I also start hormone therapy in Jan and came out of rads pretty well. I’m also keen on trying to keep up my quality of life with all this. There are some boards where people have been fine on tamoxifen, I bookmarked them as I’m really anxious too so hearing of some positive (or at least not negative) experiences helps!
https://community.breastcancer.org/forum/78/topics/867121?page=1
https://community.breastcancer.org/forum/78/topics/802604?page=1
https://community.breastcancer.org/forum/78/topics/843608?page=1#idx_12
evily / wised / lplibrarygirl - I also have clear genetics and not much history of bc in my family although my Grandpa had it but much later in life. I’ve yo-yo’d in my weight/diet and ate a LOT of sugar in the years before bc hit so I have to think that had something to do with it, if only it means I can try and beat it by reversing all that. Also had a lot of losses in the years leading up, including my mother-in-law and much loved littlest pup Kit Kat which was heartbreaking... wonder how much the stress of that led to it. But then, my sister is way heavier than me and drinks while I don’t and this happened to me and not her so who knows. She has a daughter and I was never pregnant so... who knows.
Anyways, I got my blood tests done including kidney function, liver enzymes (given what we learned), sugar and cholesterol and WBC/RBC counts. Almost everything is in the normal and healthy range which is good! Still have high cholesterol but hoping I can knock that down before I start tamoxifen.
Oh I finally heard back from my MO and he just said that he’s never seen a case where tamoxifen induced cirrhosis but he did agree to monitor my liver enzymes regularly.
So I usually post just Domino as she’s been my support pup but here is our full paw family which includes my “protector” Tucker and the sweetest and still dearly missed Kit Kat who is “across the rainbow bridge” now.
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Just re: cause, of course most of us will never know. Haven't I read that only 20% of breast cancers have a genetic component? Other than lifestyle, my environmental scientist friend, who was diagnosed with IDC this past summer, pointed out that of course the environment has a lot to do with it. FWIW, I've never fixated on the "why". I get a decent amount of exercise (although could do more in the non-gym part of my life), and the diet changes I have made/am making are more related to overall health than BC specifically. I'm doing what I can medically and have to hope that's enough going forward.
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Haha, I like your thinking on saving the one glass a day to have 3 glasses on the weekend. This is such a great thread. I look forward to hear how everyone is doing. Best wishes to all...
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Morning everyone! I did ask my PCP on the soy / flaxseed thing and just heard back. Copying what she wrote:
“I would have you check on nutritionfacts.org for flaxseed and soy info. I haven't seen anything negative on flaxseed in terms of breast ca. Soy myths are more wide spread. My understanding is that soy in minimally processed form like tofu in about 2 servings per day is beneficial for women. The higher processed soy like soy protein isolate, which tends to be found in processed and package foods should be avoided .“
Also my Dad reminded me that 5 years ago he had a stroke and today he is in the healthiest he’s ever been (he FULLY recovered from the stroke). He looked at the stroke as his wake up call to great health so I’m looking at the bc the same way. It’s not a fun wake up call but I’m definitely more focused on food and nutrition than ever and have lost 28 lbs since the diagnosis!
Off to walk the pups then to work. It’s all overcast today so I miss the working from home that I did during radiation now. TGIF at least
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Good morning everyone! Thank you pebbles!
I see my MO today and am going to ask about soy. I love edamame for a snack.
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Good luck Wised! Hope all goes well.
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Thanks Tigerlily.
My hematologist said that exercise is pretty much chemotherapy for breast cancer, that is how effective it is for preventing recurrence. I was already active but upped my level of activity much more. Suddenly I am motivated much easier to get up off my butt and get out for exercise. I now win all the fitbit challenges with my friends too - added benefit 😀
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All is well! Thanks Spoonie! My WBC is slightly low, but it has been dipping below normal since I was on chemo three years ago. My oncologist is not at all concerned. she agrees with my oncologist radiologist that my seroma / hematoma should not be touched. We had a very interesting conversation about preventing metastasized tumors. I have Factor 13, a really rare bleeding disorder. The fibrin in my blood does not produce an adequate clot. We talked about how I am at a lower risk for metastasized tumors because of that. Tumor cells circulate throughout the body through the bloodstream and attach using fibrin. she says that's why a lot of oncologist will suggest daily aspirin to help prevent metastasis. She also said that exercise helps the body clear itself of circulating tumor cells.
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Got my Zoladex injection and took my anastrozole today. Let the fun begin!
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HI all! I am late to this group. Started my Tamoxifen in November but after reading a few posts here I just shot off a message to my Oncologist about why my liver wasn't checked first. My SE have been mild if at all but I don't need any new health worries on top of my BC.
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Welcome MLAnne! What part of Minnesota? I'm in the SW corner.....
This could be in another thread but is anyone planning on any type of plastic surgery after their lumpectomy? I guess one has to wait 6 months to make sure everything is healed and no swelling.......my boobs definitely don't match anymore but not sure that it bothers me enough to deal with. Hubby says it's totally up to me, he's good with whatever I decide....
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