Stage 2 Sisters Club
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Hello ladies, and thanks for making me feel welcome. If it's ok, I will give some more information. Since the age of 28, I had fibrosistic tumors in my left breast. So, my doctor told me to keep up with my self breast exams. At the age of 40, I had a mammogram. All was fine, and I have very dense breasts. I would always examine my left beast. In December of last year, I noticed my nipple was inverted. I thought that was odd, however, I ignored it. In January, I noticed that my nipple was still inward with some pain involved. So, I googled it, and saw this could be a symptom of breast cancer. I freaked out, and had a mammogram the next day. As I knew, there was an area ofconcern, so I was to have biopsy. A week later, the results benign. The breast surgeon was not convinced of the results, so I had another biopsy done, and a week later, the result was malignant. I was not surprised. I also had a 7 cm palable lump. Thank goodness only 1.3 cm. was cancerous. The remaining lump was a papilloma. My cancer was a grade 2, with one lymph node involved. I sought two opinions, and had 28 treatments of radiation. I did have the onco dx test, and my score was 14. No chemo. Did anyone find their cancer themselves? Also,did any of you have a biopsy that came back benign, and turned out malignant? Is this called a false negative, or positive? I still have more questions which I'll ask later. I would love to hear from you. Sorry for typing so much. This is so new for me
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Oh no!!!!! Sorry this posted twice
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Hi Jaymeb: no worries on the double posting...though I think you can remove one of the two..there is an option to do that at the bottom of your post...
I found my own cancer, after noticing nipple issues and pain similar to yours. There was a palpable lump. Can't really answer your other questions from my own experience so hopefully someone can chime in.
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Congratulations those celebrating their first of many cancerversaries ( of only BC ofcourse). And welcome to the newbies!
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Jaymeb - I have my annual mammograms since I was 35,dense breast always normal until this year they saw a sometime in my lymph nodes and I did US can’t find my cancer in my breast, finally MRI found it. That began my cancer journey and changed my life completely.
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I found mine too. I have always had very cystic breasts. This lump felt different. Funny how you just “know”. I had a lymph node core biopsy come back negative but since it had no lymph tissue in it at all the BS wanted it redone. They must have missed the lymph node even though it was ultrasound guided. The second time the guy was practically standing on my head trying to get the right angle. It kept moving so I guess it was difficult. Came back positive the second biopsy. Good news was that it was negative when it was removed atsurgery after neoadjuvent chemo.
Steph are you taking an AI and xeloda? I’m just on tamixifen for now.
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I to found mine, 2 mts after a clear mama, I had noticed a inverted nipple and a lump. The lump was right under my nipple. I have lumpy breast but this just felt different then usual . After several Drs visits and demanding the lump being taken out we found out it was cancer early Dec 16.. Its hard to believe that its been almost a year, while I think I did pretty good during treatment , it was a mental hell I do not want to ever repeat . Started Letrozole 1 mts after chemo ended and thankful I have not had any side effects that many ladies have .
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HoneyBeaw, it's a good thing you were persistent. Breast cancer is scary, and mental hell. I'm going through depression, and have been for several months. Any ache, or pain, I jump to conclusions that my cancer is back. It sucks!!!! I feel like I have this dark cloud over me all the time. I know this disease is a huge change in all of our lives, and I know I'll never be the same. I do see an oncology social worker weekly, and that helps. I also go to our breast cancer support groups, and have met some wonderful ladies. I'm the youngest, at the age of 48. I have to say, our cancer center has many different programs. Do any of you ladies go to support groups, or participate in any programs? I apologize if I sound negative. Just saying what's on my mind. I do want to congratulate all you women who have celebrated caniversities. I see some are a year to 10 years out
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oops, I meant canniversaries.
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Jay, I tried to go to a local support group, but I quit. It creeped me out too much. I couldn't stand to think and talk about cancer all the time (which might seem like a strange thing to say since I hang out here, but this is somehow separate from my 'real' life). Maybe it's time to move away from it for you as well. Do more fun, interesting, engaging things. Especially things you'v wanted to do, but just haven't taken the time. If you are planning and doing other things, you don't have so much time to think about cancer. Also, if you don't exercise....start. It's great for you both physically and mentally. And is the biggest non-medical thing you can do to reduce your risk of recurrence. Check out the Let's Post Our Daily Exercise thread on the Fitness Forum if you want some exercise buddies. All fitness levels welcome. A great group of encouraging ladies at all stages of treatment and beyond!
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Hi Steph, I don't know anyone else who is taking Xeloda with stage 2. Can I ask why are? Is it a trial?0
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jaymeb, here's my story. Early last March I googled "inverted nipple" after I noticed not only that but also that the affected breast was getting generally larger than the other. It actually wasn't the first time I noticed these changes but the first time I decided I'd better google my symptoms. When I read what you read, I high-tailed it to the nearest walk-in mammogram place the very next day, which was a Monday. Now I hadn't had a mammogram in maybe ten years. I ended up staying there all day as they took repeated shots from all different angles. By the end of the week I was biopsied and diagnosed with triple-positive cancer. I had a 1.7 cm lump that incidentally was not palpable by any doctor who tried to find it that way. I also had one cancerous lymph node--surgery later revealed two more.
Because of my triple-positive status they had to treat me with everything they've got. First came a minor surgery to insert a port, six weeks of TCHP, then a mastectomy, then six weeks of radiation. My last rad is coming up this Monday. I have been put on anastrozole for five years and will be completing a year of Herceptin infusions every three weeks in the spring of 2018.
The toughest part for me was chemo, but I would do it again if recommended to me. My radiation oncologist calculates that all of my treatments together will bring my risk of recurrence down to 15%. I like those odds. Dietary changes, weight loss, and exercise can lower the odds even further. I lost 25 pounds while on chemo, something my doctors hadn't wanted to happen, but now I plan to lose more by actually trying to. My BMI is not at all in the safe range and hasn't been for years, although I was trim as a young person.Most of my weight gain happened in my late 40s and 50s. I am 64 now. I will be meeting in December with a nurse practitioner at the cancer center to discuss the lifestyle changes I need to make and which diet and exercise programs I should consider enrolling in.
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RuthBru, thank you for your advice. I used to be an avid runner, doing marathons, and 5k's. That's when I felt my best. I was also at a good weight. Several years ago, I stopped excercising, and my diet is not the best. I love sweets, breads, pasta, all that is bad for you. At the time of diagnosis, I was overweight. I wonder if that was one of my contributors to breast cancer. During treatments, I lost 15 pounds, due to lack of appetite. I need to lose another 15 pounds, but I want to do it the right way. I'm trying to change my bad behaviors. I'm a night owl, so going to bed at 2:00 a.m. is now the norm for me. I get up at 8:00 a.m, and take my 14 year old to school. She loves the mornings, and gets me up!!!! She has way more self motivation than I do. After I drop her off, I go back home, and get back in bed, and sleep until 1:00. It's pathetic. So, these past several weeks, I'm trying to get in bed earlier, and get up earlier. I'm having to do this in baby steps. I do see when I'm busy, I'm better. I'm on leave from work, and they have been great. My supervisor told me to come back when I'm ready. I actually miss working, I'm a teller at Wells Fargo, and love my job. I'm very much a people person. My daughter is all about her friends, and social life. However, she is a great student. I feel like all I do is play chauffer!!!! I miss those toddler, and little girl days. AliceAgnes, I went 8 years without a mammogram. I lost my father to lung cancer, two years later, a divorce. I was a stay at home mom for 13 years. Getting back in the working world was hard. So much had changed, I'm not good with technology. I also went a couple of years without insurance. If I hadn't noticed the nipple, got knows what would have happened. I have learned to always pay attention to your body, and go with your gut instincts. I'm glad you caught yours, and seem to be doing well. I see you had to take chemo due to being triple positive. I did meet with a dietician at our cancer center. Before I met with her, I was told soy was not good for breast cancer patients. Apparently, soy is ok to have. Has anyone heard anything different?0
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AliceAgnes, how are you doing with radiation
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Hey jaymeb,
I was the same way. Didn't get mammograms and now I regret it. I had scripts for them..kept putting them off. I wonder now if it was a subconscious fear, since my best friend died of breast cancer when I was in my 20s. However, I have dense breasts so one could argue, maybe they wouldn't have caught my cancer any earlier anyway with yearly mammograms. No point in second guessing. Esp when the second tumor in my right breast wasn't even caught with the mammogram and ultrasound that detected my FIRST tumor!
I, too, had a visual indicator--a dimple. Otherwise, I would not have known.
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Well, you can't undo anything you did or didn't do before.....you can only go forward, so that is where your focus needs to stay.
Everything is fine in moderation, Jay. Just don't go dumping soy sauce on everything you eat or gobbling down tons of it in exclusion of anything else. My advice would be to get back to work as soon as possible. When you are working, you have other things to think of and then you start thinking outward instead of inward all the time.
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Hey swg
It's so scary when mammograms don't detect everything. When my right breast gets a mammogram in January, how will I know a tumor won't be missed???? I see you're newly diagnosed. What are your treatment plans? Are you having a mascectomy, chemo, and radiation? I'm sure there is so much on your mind. How many lymph nodes are involved? You don't have to answer my questions if you're not comfortable. I get ahead of myself sometimes.
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Peregrinelady,
I'm stage 2 and am on my 5th round of Xeloda. I'm taking it because I did not get a pathologically complete response to my neoadjuvant chemo. The Xeloda is a preventive measure for triple negative patients. Kind of like hormonal treatment for er/pr positive patients. There a study, CREATE-X out of Asia, that showed that taking Xeloda for 6 to 8 three week cycles increased 5 year disease free survival for triple negative patients from 60 something percent to 80 plus percent. That is nothing short of amazing, so I pushed my MO to put me on it.
I've been fortunate to have had only minor side effects so far. Hoping that stays true for my final 3 cycles.
Trish
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ruthbru, You are right. I'm sure you can tell, I obsess too much. The only thing with my job, is I have to go through training again, as I've been out since March. My ex-husband, who is still my best friend, tried to get me to go back before radiation in July. I hate to admit it, but he was right. After talking to my supervisors, we agreeded for me to come back after my reconstruction in February. My PS will be taking out my tissue expander, and putting in an implant, as well as reconstructing my right breast to match the left. In the meantime, a good friend of mine wants me to volunteer at the assisted living home she supervises. I'm active in our church, but there is still more I can do. Ruth, although I think I know the answer, do you live by a routine, and balance? You have so much wisdom. I definitely need to change my behaviors. I have to point out, you women who worked during treatments, especially chemo, how did you do it? You are all so amazing. Such strong women.
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Trishyla, thank you for the explanation. I am glad to hear that there are more options out there for stage 2 people, especially TN. I am also happy for you that the side effects are minimal so far. Good luck with your treatment and please keep us posted.0
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Hey Jaymeb!
Well, as far as making sure a tumor isn't missed..make sure it's a 3D mammogram followed by an ultrasound, and get a breast MRI once a year. MRIs catch most stuff..90 percent, I think..
I'm getting a unilateral mastectomy with immediate reconstruction on Nov 28. This week I'm meeting with a medical oncologist about going on Tamoxifen or some other hormone suppressing drug. I won't know if I have positive nodes til after my surgery.
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Jaymeb
Going back to work was the best thing for me, I had (have) anxiety over this whole mess but at least at work I don't think about it 24-7. I simply do not allow myself downtime and I do love my downtime but it lets me fret to much and then I get over whelmed all over again. .
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Getting back to normal life would be a good thing, I just finished chemo and I still have radiation to do. I’m thinking how to get my strength back and pick up my life again,
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Hey swg,
Are you premenopausal? I am, and take tamoxifen. From what I understand, that's the only hormone therapy drug available for premenopausal women. But, I'm not sure. I was given tamoxifen after my surgery before radiation. I've
done really well on it. I do get hot flashes, and moodiness. Sometimes, forgetful. As you know, it's crucial to take everyday when your oncologist prescribes it to you. I'll be on hormonal therapy for 10 years. I recently read a study that hormone positive women may benefit from hormonal therapy for the rest of their life. If that's the case, I'll take it
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Hey PauletteK
I'm sure it's a great feeling to be finished with chemo. I'm sure that was the toughest part. How many radiation treatments will you have to do? I did well with radiation. Just a little skin irritations, and toward the end of treatments, some fatigue. Will you be taking hormone therapy?
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Congratulations on finishing chemo, Paulette. For what it's worth, I could actually feel my energy returning during radiation. Make sure you use whatever ointment they suggest religiously from the start. Don't put any on before your appointment, but bring a little tube along and smear it on right after the zap & then again before you go to bed at night. If you haven't been exercising, start doing something light (like walking), it will actually diminish fatigue.
Jay, when I was in treatment, I tried to stay with my normal schedule as much as possible so that I wouldn't go crazy. I really didn't even allow myself to reflect on the whole thing until about a year later....so time and distance helps with the 'wisdom' part.
I know that I live a lot more purposely now. I do less of the things I don't want to do, and more of the things that I want to do/try. A saying that spoke to me goes, "It is what it is. It becomes what you MAKE it." If you resolve that some good things will come out of this; and act on that resolve, then they will (not right away, but eventually).0 -
Yup Jaymeb, I am pre-menopausal. Even though I'm 50. I am just having my menstrual cycle right now actually. It's come like clockwork since I was 13. I think that put me at risk for cancer, sadly. Never had a kid. Never breastfed. Have dense breasts..lots of risk factors there.
I'm seeing a medical oncologist this week and I'm sure we'll talk about me going on Tamoxifen after my surgery Nov. 28. I'm honestly a bit scared of the side effects, but I'd much rather do this than chemo, I can tell you that. I figure, I'd probably be going through menopause soon, anyway.
And yes..I too read a study saying that taking it for 10 yrs extends your survival past if you stop after 5.
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Jay, I haven’t find out when to start my radiation as I remembered my MO said 30, will on hermo al therapy but not sure which one. I’m post menopause already 61.
Ruth - thank you, I’m still going though my SE from the last infusion so I need to get over my bad days before I can get better. I do my daily walk good day I walk about 40 minutes, bad days ...... still want to walk maybe 10 minuets. I keep in mind on the radiation hope will start in December. Honestly I’m a little scared.
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PauletteK
It sounds like you're doing the right steps to feel better, even when you're not at your best. That's great. As far as radiation, I think you'll do great. Ditto, on what ruthbru told you. I used lots of coconut creams, aquafor, and a prescription cream I didn't even need to finish. Getting prepped for radiation was longer than the actual x-rays. I got to know the techs, and they were great. I actually looked forward to seeing them everyday. We would laugh, and talk. On my last day, I was a little sad, crazy, huh?0 -
swg,
I read those same risk factors. My periods were like clockwork as well. But, back in October of 2016, it stopped. Months went by, and I was getting happy I might be in menopause. Well, after my Mascectomy, in the hospital, went to the bathroom, and blood everywhere. What the hell?? So, the nurse just says, well, you're obviously premenopausal, it was my period. Was not a happy camper. Well, since I've been on tamoxifen, I have not had a period in 5 months. I'm so ready to be done with those. We do have similar risk faactors, although I had my first, and only pregnancy at age 34. Having a child past the age of 30 is also a risk factor for breast cancer. As we all know, many women are having babies well into their 30's, and early forties. I don't understand why having children later in life, and not having kids is a risk factor. Anyone know? I could not breastfeed due to toxemia of pregnancy. I think you'll be ok on Tamoxifen, if that's the decision. I was wondering about if you had to do chemo? As you know, many answers will come after surgery, and your pathology report. Since you're hormone positive, and if you have 3 or less lymph nodes, did your oncologist mention an onco dx test? I was able to skip chemo due to that test. I had a score lower than 18, which means chemo would only have made a difference of 1%. So, onco said didn't need it. I already have your surgery date in memory, and you'll be fine. That was my first surgery under anesthesia, and the best sleep ever!!! Will you do reconstruction at the same time with an expander? You are in my thoughts.
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