Stage IIb and 5+ years out, anyone?
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I have only had one done. My last infusion of h&p is January 25th. I have a laundry list of questions for my Mo I'm going to add tumor markers to my list.
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Hi duckee,
That's wonderful, congrats to your sister! If you don't mind me asking, did your sister have reconstruction? Thank you.
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I like to check in from time to time. I posted before but there may be new people. I was diagnosed with stage IIB in 2005, over 13 years ago. I had pretty aggressive treatment with bi-lateral with reconstruction, chemo and rads and 10 years of Femara. Since my oncologist won't let me take Femara any more (he released me from his care at 10 years), I take a baby aspirin just in case it might help. I stay thin, exercise, eat reasonably well, and don't drink alcohol very often (maybe a glass of wine once a month). So far, so good. I was very frightened for the first 3 years and still worried after that. I was 49 at diagnosis and am 62 now. I don't worry much about it any more, unless I have an unexplained pain and then the fear comes out of hiding until it goes away and goes back into hiding. When I was first diagnosed I really wanted to hear from long term survivors so I hope you find my post comforting. Take Care and hang in there.
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Liz
Thank you for posting , Yes I love hearing from long termers it raises hope in so many ways
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Stage IIB and ten years out! Couldn't complete hormonal therapy, so I have to pray the chemo did its job!
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comingtoterms- thanks for sharing.
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Greetings!
7 years out for me! Dx at age 50, surgery, chemo, rad. Onco DX 18, tamoxifen needed for only 5 years based on genomic testing. I try to keep myself healthy, diet, excersize, fresh air, rarely drink, never smoked. I see my oncologist once a year, mamo yearly. Incidental findings on scans prior to treatment, lung and thyroid nodules, all being monitored. My biggest stressors, still have trouble sleeping and the way my breast looks to me. I am grateful every single day I was caught early and had great doctors and treatment.
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Not sure if I posted here or not. Over 9 years out. Unfortunately the side effects of treatment left me disabled.
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seachain- I am so sorry to hear that the side effects from your treatment made you disabled. Are you in pain?
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Ladies
Thanks so much for posting 2 yrs out here , no reconstruction yet, still thinking on if I want to deal with that mess.
I do want to ask how many of you have went on to have your ovaries and uterus take out since having BC. Its something that worries not , while no family history of BC or Ovarian its still something that concerns me.......not sure if that worry is justified or not .
I went through menopause young 42 had a bad accident and had very few periods after that Dr say the accident threw my body into shock and that they may never come back with they have not .
While I continue with that well woman check each year none of the Drs seem to concerned or have given much though to maybe I need to get all that stuff taken out as a preventive .
Your thoughs comments would be appreciated
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honeybeaw-I never thought about it.
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jo6359, yes, accumulated side effects: post mastectomy pain syndrome, costochondritis, "iron corset" from LD reconstruction, peripheral neuropathy from chemo, destroyed cervical spine from aggressive osteoarthritis triggered by AIs, painful muscular spasms from remaining back muscles unable to compensate for the missing LD muscle.
HoneyBeaw, as I see it, it would be useless as after menopause the production of estrogen is taken over by the adrenal glands an fat tissue. I guess only if you want to do a prophylactic surgery to pre-empt ovarian/uterine cancer the way that some do prophylactic mastectomy.
Also, I hope you're aware that insurance covers reconstruction only for two years following the mastectomy. After that, it's elective.
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HoneyBeaw,
I did remove my ovaries right after I completed chemo and rads. I was pre-menopausal when diagnosed and wanted to take femara instead of tamoxifen and removed my ovaries as part of my treatment, then took Femara for 10 years.
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I am over 14 years out with Bi-Lateral Breast Cancer! Stage 2b, Grade 3 in Left Breast and one positive lymph node. Stage One, Grade 2 in right Breast! Very Aggressive treatment: Chemo, Radiation, Doubl Masectomy(no reconstruction) and total hysterectomy🤗🤗🤗🤗🤗 Also 11 years taking Aromosin
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Seachain
I was not aware that insurance would only pay up to 2 yrs post mx, If that is the case with mine then Im clearly screwed if I decide to go ahead with it .
I guess I was under the impression that they had not pay for reconstruction due to BC no matter what ....My bad for not checking and well lets be honest I was in not in right mind set at the time everything happened so quickly and it just was not a priority for me at the time.
UPDATE
I just went and check, from what I have read law requires ( The Women's Health and Cancer Rights Act of 1998) that as long as you have had a mx and your insurance paid for that they are required by law to pay for reconstruction and it don't matter if you have it at the time of the MX or years later .
I will have to check into my policy and see how it reads
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dx 2001 stage 2B , right breast, size 2.2 cm, stage 2-3, her 2 neg with one positive lymph node. Lumpectomy and 13 lymph nodes removed. chemo ACT and radiation. Eighteen years since DX !! I was 48 and found my own lump 7 mo after mammogram. my breasts were dense they said. Took arimadex, tamoxifen and femara for many years. Ive had both knees replaced and many joint, muscle, tendon issues ever since chemo and AIs . Also have osteoporosis / prolia and take px strength vitamin D. I feel blessed to have survived 18 years. I have aged much faster though and have very thin hair from chemo , etc. I still feel blessed and thankful to be here with my family. Im overweight and don't consistently watch my diet for sugar, either. I have a lot of back, joint, leg pain but just rest when I need to and use OTC meds if gets too bad, have lot arthritis too. I also found out im pos for Lynch syndrome few years back and get preventive checkups. Don't worry, have hope, each case and person is very individualized.
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seachain- you have been through hell. It's incredible to imagine everything you've been through with the side effects from your treatment.
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any grade 3 free-disease more than 10 years? most of the survivals here are grade 1 and 2. I'm grade 3.
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10 yrs since ago I was shocked to be diagnosed just after my 40th birthday, fit, health no family history
I Did chemo, hercepton and only one year of Arimidex as my bone density plummeted. Zometa infusions helped get it back into a low normal range
No ongoing issues since, yearly mammo and ultrasounds clear, bone density a little low which is monitored 2 yrly.
Celebrated turning 50 recently, have never been fitter or healthy, I took up crossfit at 45 and love it - makes me feel strong and invincible.
Breast cancer really is a distant memory now, in the early days the risk of recurrence really occupied my thoughts, honestly now I rarely think about breast cancer at all.
One of my close colleagues was diagnosed recently and when I told her that I was a 10 yr survivor it gave her a lot of reassurance as nobody at my work knew - for those newly diagnosed I hope my story helps a little bit.
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Letrletrozolei was diagnosed apr 2017.. Stage 2b w 1 node positive. Dble masectomy a b out 7 months after diagnosis. 3 lumpectomys they kept finding more cancer everytime so.. Ive had one heck of ride on this cancer card..im still wondering does anyone suffer fro. Atrophic vaginitis from being taken rhru pre menopause to post( leutal phase) in about 8 months. Trlstar vs lupron.. Not the same.. As i now have had to take sex off the table.. To painful and uncomfortable.. Vaginitis wont clear. Ive been taken off the exemestane and mt last shot of trylstar was over a month ago.. Im 46.. A single mom and really feeling like theres hotta be lore optons for my vag to. Feel like a 46 yr old.. Im just utterly at a loss. Docs say no estrogen cream .. Absolutely NOT.. So im just hangin at home alone w vaginosis and its really not sitting well w me any one have the mona lisa procedure done..?? Ive done it all tamoxifen.
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hello loulou,
Reading your posts, I'm wondering does your ONCO or PCP prescribed the zometa infusion. I'm having bone loss too due to Anastrozol, it's probably getting worse. I also have degenerative disk disease. Thanks.
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Houston, I had osteopenia due to hyperthyroidism before starting AIs. While on them, I followed the recommendations of me BOS, 1000 mg calcium daily in 2 doses (very important as body can't assimilate more than 600 mg at one time, it excretes in urine, danger of kidney stones), 5000 UI vit D3 daily (I need more than normal due to messed up metabolism) trying to keep levels at 60; very important, have 3 hours time between taking calcium and the vitD3, as it interferes. I got rid of osteopenia in hip, the one in lower spine got better. Also, walk.
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Just hit the 5 year mark! Yipee! Cancer 2b grade 3.
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AKJ congratulations! Wow so inspiring, especially since you had positive nodes too. Thank you so much for posting.
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AKJ-Great news on hitting your 5 year mark.
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seachain, I read also the law covers reconstruction regardless length of time. I am taking vitamin D3 and calcium together not apart because calcium needs vitamin D to absorb. I'm just wondering when is zometa infusion necessary.
I'm 2 yrs out from left MX since 11/16 still have the TE but contemplating not doing recon. I read that delayed recon can trigger recurrence, if I have Diep Flap that's an extensive surgery with much tissue trauma, wound healing. I am feeling pretty good right now and don't want to go through all that suffering. Another side of me thinks if I don't do it now I'll be too old for it.
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GwennyMD, I'm angry at my OC, BS and PS. Why they didn't give me the option to do UMX and immediate recon. They want to play the card where I have to do radiation so everyone gets a piece of the pie. Who is your doctors. Thanks.
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Houston, it does need vitD to absorb, but that doesn't mean they have to be taken at the same time. You have to have a decent level of vitD to absorb the calcium. That means, take the vitD before you take the calcium, otherwise it will latch onto it as you're taking it and less vitD will get in your blood. I'm trying to explain in an easy what happens, so you don't have to take insane amounts just to keep the vitD levels at a decent number. I was making the same mistake and was frustrated that I was taking 5000 UI a day and my levels wouldn't get higher than 30, when my breast oncologist wanted me at 60. Until he thought of asking me how I was taking it and explained to me. Now my levels are in the desired (considered preventive) levels of 60-65.
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Houston2016 - I thought I should share my experience with reconstruction. I had a unilateral mastectomy with tissue expander placed. I felt that TE every day for the 15 months it was in my chest. I had DIEP flap reconstruction and can honestly say recovery was easier than my mastectomy. I had two nights in the hospital after each surgery. I was back at work six weeks after mastectomy and five weeks after DIEP. Going into each surgery i was relatively fit and active, exercising daily and working full time. I was 55 at diagnosis.
If you think DIEP is for you, talk to a PS who does this and ask for honesty. My PS promised me “pain” for two weeks; I took nothing stronger than Tylenol after 8am the morning after surgery. I took walks around the block beginning the day I returned home (Friday after Wednesday surgery). It’s not an easy surgery (what surgery is?) but don’t let the online horror stories prevent you from exploring the option.
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i had the mona lisa done and it definately helped
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