Ladies in their 40s
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sadlynew2018 SO happy for your news! I am 42 and have two kiddos! This is tough stuff but my husband keeps reminding me they are going to be better little people having gone through this with their momma!
Hang in there! 💕
Sarah
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Sheliamarie, thsnk you for sharing❤️🙏! I have to make notes where to look , I think lumpectomy is not great choice - maybe somehow it spreads tiny cells in lymph susyem
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sadlynews- this is the best community to cheer, support, share knowledge, meet up and more..
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thank you SarahNola! My husband says the same sometimes but it’s so hard to believe. I wish I could just get this treatment started so I can look towards a finish line! :-)
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SheliaMarie,
That is such sage advice, but so hard to do. I'm two years out and finally starting to feel like I'm living. I was doing things, but I just going through the motions. Now my fear is that I wasted all that time. I hope I have some good years left.
I'm sorry that you are dealing with MBC.
HUGS!
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Hi Piksie, hope you are doing well. Your story really touched me. I was diagnosed in June this year and still going through treatment. I'm starting radiation in two weeks, it was delayed because of re excision to get better margins after mastectomy. I was wondering if you started hormonal therapy with your first diagnosis?
Your warrior spirit is encouraging. Thank you for sharing. Wishing you all the best.
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Palesa2018,
Sorry for two surgeries, but glad they went back for insurance. I hope the second healing was easier than the first!
Yes, I took Tamoxifen after the first diagnosis. I'm disheartened that it did not work for me. My Onco was 17 so MO strongly encouraged me to forego chemo because Tamoxifen is so successful. He was adamant, "If I do this to you (meaning chemo), you'll die of heart failure before you get cancer." We also didn't do radiation because SNB was negative and good margins on the mastectomy. Hindsight, I should have done at least radiation, but no room for regrets.
A lot has transpired since I posted here. I had a repeat mastectomy to remove the recurrence at the scar line and an axillary node dissection on Aug 17. The original plan was to follow with radiation, but my lymph node count was 18/18. I'm 99% sure that cancer didn't stop at level II nodes. There is still cancer in me. It was most likely there last time, beyond the sentinel node. I'ts surreal to think that I have been walking around with cancer this whole time thinking that it was all behind me. And it's STILL there, so I start chemo on Wednesday, 9/12. Dose dense, four cycles of AC; four cycles of T. Radiation in January, and we've upgraded the hormone therapy to Arimidex and Zoladex. The hot flashes have already started... it's weird!
So it's time to beat it again; this time for real!
I'm so ready to get this started. I'm incredibly fortunate to have a crazy-supportive village. Almost too much. One of my life lessons from all this; I have to fight my independent, stubborn nature and accept their help. They want to be helpful, and I just need to say thank you for their love and support. Here's to beating this stupid disease! I hope radiation is kind to you.
-Sheri
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piksie, you were on my mind today. hope all goes well today for your first treatment. Please let us know how it goes! Sending thoughts your way.
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Aw, thank you Sadleynew.
I goofed when I entered my treatments. I start tomorrow, 9/12, but I will definitely check in with a status. I hope I feel great for the first couple of days because I have a hair appointment on day 2 to be a "model" and let her do whatever she wants to my hair. It's long, so she should be able to get 4-5 hairstyles out of it. I'm really looking forward to that.How are you after your ALND? Was it an outpatient procedure? Crossing my fingers for the all clear!
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Piksie- thank you for your detailed response. I found it very helpful! I'm thinking of you and wishing you all the best with the chemo. With my Onco of 12 I have also forgone the chemo, hoping it was the right decision. In addition to radiation I start Zoladex tomorrow and Tamoxifen only after radiation.
Here is 'to fighting this stupid disease! I'll tell you the thing it has given me is a lot of perspective. Living life more simply, focusing on the things that matter. Hugs to you!
Sadlynew- sending hugs your way too. Things do get a bit easier with time. I am coping far better than I did 3 months ago when I was diagnosed. And learning to accept help!
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the procedure was fast and I went home the same day (outpatient). They gave me a pain block when I was under and I’m still pain free. Waiting on either (1) the pain to come crashing down; or (2) complete amazement by the lack of pain. I, too, am so anxiously awaiting the results. Good luck tomorrow! Let us know how it goes!
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Palesa 2018 - absolutely it does. I appreciate everything that matters in my life so much more than I ever have. My days seem brighter with the exception of the times I think about this “stuff.” My onco score was 26 🤔 so I was headed for chemo even before my crazy node predicament. Sending well wishes your way :-
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HI Ladies,
Checking in after a long stint of not logging in. Life got crazy, which is a good thing, I guess! I will be 3 years since diagnosis in December. I had DIEP flap reconstruction as I am triple positive and family history (tested negative for both BRACAs). I have been on Tamoxifen for a little over 2 years. My issue de jour is blotchy patches of skin close to my hairline. Also, thinning hair along my hairline too in same area. I did use Penguin Cold caps during chemo, but chemo ended 2 1/2 years ago! Wondering if this could be related to the lack of estrogen in my body since Tamoxifen is sucking it out! Anyone else experience these brown patchy areas of skin?
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Hi ladies,
I'm so happy to have found this group. I have felt through this journey that it feels very specific to be this age and stage. I'm 42 with two sons, 6 and almost 3, happily married to the man I met at 19 years old. My father died right before my oldest was born, and between that, adjusting to motherhood, the sleep deprivation and physical toll of pregnancies and early baby years, I had felt I was just getting back in the swing of things and settling in for some really good years ahead. But …. last December (at age 41) I went for my first ever mammogram, and it was clear from the callback mammo that things weren't going to pan out that way. Fast forward through this year: official diagnosis in Jan, mastectomy with DIEP reconstruction in Feb, chemo April through August, in preparation for my DIEP revision surgery -- surprise! cancer hanging out still on the scar of my original biopsy, bless my amazing breast surgeon for catching that, so now I have a lumpectomy on my mastectomy breast (which makes me laugh), I'm 1/3 of the way through radiation, and they amped up the hormone therapy to include ovarian suppression and an AI. So right now I'm in the middle of a big THIS SUCKS with artificial menopause and a bit worn down by the daily trips to the cancer center on top of work/kids/life, but glad that radiation seems like the easiest treatment I've had.I've read through everyone's posts and share so many of the feelings that have been expressed. From the worst — initial diagnosis, PET scan on my oldest's sixth birthday after my reoccurrence— to some of the best: support from so many loved ones, a renewed gratitude for my children's amazingness, even gratitude for small moments of beauty like the perfect fall leaves in the park lately. I like how Sadlynew described it as "days seem brighter".
Looking forward to sharing more of our good and bad together.
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2002chickadee, Thank you for sharing your journey. I can imagine some of your experiences in this journey. I'm 39 with two kids, 6 and 3yrs old. I too met my husband 20 years ago. Through God's grace and lots of love and support I have managed to get through the treatment and the emotional rollercoaster. I tried to keep life as normal as possible. Work, kids etc. These days I'm feeling good. Handling Tamoxifen and Zoladex well. Very grateful. I know others are struggling.
This forum has been so helpful.
All the best to all as we walk this season in our lives.
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hi Palesa2018!
I am wondering Should I be taking zoladex with my tamoxifen ,too?
Any insight you gave us much appreciated!!!
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Hi Annie B-7-14, if you are premenopausal then yes and because you are ER+/PR+ it would help because Zoladex works by shutting down production of estrogen from the ovaries (most Estrogen comes from ovaries). The less Estrogen in your system the better. Tamoxifen will then address the little that comes from other sources (adrenal glands, environment etc) by preventing any cancer cells from feeding on it.
I'm on both because they each serve a different purpose. I started Zoladex at the same time as radiation and Tamoxifen when I completed radiation. I will be on Zoladex for 5 years (need to remain in menopause) and Tamoxifen for 10 years.
Hope that helps. All the best!
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For anyone who's interested, this is a great breakdown of info on Zoladex & Tamoxifen, their recurrence rate & what was concluded from studies (ZIPP Trial) on the effectiveness of them together vs seperate. FWIW.
Tamoxifen and Zoladex Offer Same Recurrence Risk Reduction
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Hi everyone,
I am a single 43 year old woman with no kids. I got diagnosed the morning of 9/21/18 via a phone call, the same day I had to take my dog to emergency for acute sickness and he ended up dying after surgery (got a call at 2am from the animal hospital to tell me his little heart had stopped). So the next day when I woke up, my eyes were shut from crying for my dog and then I remembered my cancer diagnosis... I felt anger towards my baby that he had left me an orphan just when I needed him the most. He had been with me for 9 years and suddenly my life was completely altered with two horrible sh.t at the same time.. Anyways, now I feel better, lumpectomy went well, I still do have seroma though where the cancer was. Just got my oncotype score of 17 today. Seeing the RO this Friday (yey thanksgiving) and MO on Monday to discuss next course of treatment. I feel like I now have to make my 40ies the best years of my life doing the things that bring me the most joy as I have no idea when/if things will hit the fan again.
I sometimes feel like a circus freak with my friends who know my situation. I become a topic of conversation when they are talking with others, a story of a drama. So much stuff I hate about being in this situation but what can we do.. I never felt alone in my life that much before, but now with my dog dead and breast cancer to boot, I do feel lonely often. Trying to be in control of thing that I can to reduce my risk of recurrence which helps with mood. Started exercising again after lumpectomy and eating even healthier than before. Anyways, thanks for being here. Really helps. Xx
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So sorry about your dog, Nomaddd, and the cancer! Our beautiful Labrador managed to make it until a week after I found out my treatment plan. I know how brutal it is. I was 43 as well. Hugs.0
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Thanks pixi. Grief comes and goes. Once the radiation treatments are over, I am hoping to get a new furry baby in the new year. Happy Thanksgiving everyone! Xx
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Hello ladies, what do you think about new meds better than tamoxifen but with more side effects ? https://www.breastcancer.org/research-news/zometa-w-femara-better-than-tamoxifen-for-some
I started on tamoxifen 10 days ago. Definitely have hot flashes not all the time but feeling hot!
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Hey Bostoniangal! I was thinking about the same thing and actually posted a thread a bit ago about premenopausal women opting for OS+AI.
I asked my medical oncologist about it at our first meeting (which was after this research was released). She felt that for my situation she didn't think there was a meaningful benefit to going with the higher impact therapy. She offered it to me partly because I was on an AD that is incompatible with tamoxifen, but she recommended tamoxifen if I felt able to come off the other med.
That matches this quote in the article:
"Both treatments add toxicity over and above tamoxifen and so are best limited to women at intermediate to high risk where the risk-benefits are likely to be acceptable. This study is not definitive but adds to the information on these two treatment approaches."
I guess I'm relatively lower risk because I was HR+ and my oncotype score was <11. Also, I was 39 at diagnosis, which is technically young but not *that* young I guess. Under the new staging, my oncotype puts me at 1A.
I'm giving tamoxifen a try. So far it's going well and my only side effect is increased pain/aches in all the places I've ever injured myself before. Oy that poor ankle. But if the side effects get worse, or if I want to go back on wellbutrin, or if for some reason I get spooked again about recurrence, I'm glad to know that this zometa+femara combination is out there.
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BTW - I was just reading about the new staging guidelines. I was diagnosed in September and they were put in place earlier in 2018, so they should have applied to me, but it's not so easy to find the info online and I had actually been reading all about the old staging without realizing it
I was so surprised to read that now for small tumors HER+ is actually a protective factor! It used to be very bad, but I guess because of the new meds they have for it, being HER+ actually downgrades your staging and improves prognosis.
Is it just me or did everyone else already know that? I feel like when my surgeon discussed my tumor with me initially she made it sound like HR+Her- was the most favorable, though maybe she was focusing on the positive because that's what I have.
Anyway that's a huge change and probably one of the most meaningful impacts of medical innovation on breast cancer treatments that I know of anyway, and it gives me hope for all of us!
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Hi ladies, I was diagnosed in Dec 2016, did chemo & recon in 2017 and just had a complete hysterectomy 3 weeks ago. I am 42. I am currently taking Tamoxifen but will meet with my oncologist in 2 weeks to discuss other possible options since I am not post menopausal. Do any of you ladies take other meds besides Tamoxifen? I am wondering what the side effects would be and if it would make sense to change. The tamoxifen gives me achy joints (hips/legs), brain fog and some hair loss. I know I can go read about side effects of other meds, but I prefer to hear what those of us actually taking the meds say
Hugs to you all...we got this even though it's a long journey!!0 -
Lynae, I have the same SE’s from tamoxifen, especially stiff fingers when I wake up or get cold and major joint problems in my knees. It sucks but it’s helping to keep me alive, so I deal with it.
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Salamandra., thsnk ypu for sharing. I will ask my provider about both new meds . I m 29 on oncotype, and grade 3 , tumor was less than 2 cm . I heard that her 2 is more aggressive but targeted therapy helps on early stages!
And never knew that its better for grading stages!!!
Lunae, I m 41 and take tamoxifen started at the end of November!
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Salamandra., thsnk ypu for sharing. I will ask my provider about both new meds . I m 29 on oncotype, and grade 3 , tumor was less than 2 cm . I heard that her 2 is more aggressive but targeted therapy helps on early stages!
And never knew that its better for grading stages!!!
Lunae, I m 41 and take tamoxifen started at the end of November!
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Thanks so much BostonianGal for sharing the study on "Zometa Plus Femara Seems Better Than Tamoxifen for Premenopausal Women With Hormone-Receptor-Positive Breast Cancer, but Causes More Side Effects"
I'm definitely going to ask my MO about in a few weeks as I'm still trying to decide on the best route hormone therapy.
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Hi ladies - found this thread and hoping to join the conversation as well (and hi to spoonie, salamandra, and some of you I "know" from our radiation in Nov./Dec. forum!).
So for me - I'm 43, diagnosed in Sept., married to my wonderful husband of 3.5 years, we have our "paw family" of pups (one who crossed the rainbow bridge in March), and no kids. I'm going through radiation now and will be starting tamoxifen after that, although not right away as I'm also going through mild IVF right now to pull some eggs because my husband and I at least want that door open. Those of you with kids already, please know you have a blessing and a silver lining in all this. Those of us without kids, it complicates things because the treatment can impact our fertility.
The funny thing is, my husband and I were always fine with our "paw family" only if that's what's in the cards for us, and if we had kids great, if not we were fine, which is why we never did anything before that was not just having kids naturally. But ironically when this whole BC thing hit, suddenly doing something to at least preserve that option became way more important to me. Before, I wasn't even considering any of the IVF stuff because of the havok it could rack on my body. Now, after the lumpectomy (my first surgery ever), those wires they put in your breast before the lumpectomy, CT scan, PET scan, radiation etc., the IVF stimulation is a walk in the park. Funny isn't it how perspectives change?
Anyways, it's very comforting knowing there are others going through this in our 40's! It's funny that when I go for treatments or appointments at the hospital, this is one of the only places they keep calling me "young" (i.e. I went for my radiation check up before final boosts today and mentioned how I wasn't really fatigued, and the radiologist said that was because I'm "young and healthy" so had those cards in my favor).
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