Stage 2 Sisters Club
Comments
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Sorry, Poppy, I don't think I am interested in more gene links. I just started breathing again after finding out I am negative for BRCA 1&2. I am taking a break from worry at this point and am going to enjoy life for awhile.
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Formydaughter-I had the extra genetic testing. I think it is relatively new. My first test was for the BRCA genes which were negative. The genetic counselor said there was another panel but there wasn't as much known about those genes. However, as more people were doing them, more is being learned. The panel tested for the BRCA genes again. I asked why we didn't just do the bigger panel in the first place because it cost only $100 more than the regular BRCA test. The counselor said the BRCA test is quicker than the larger panel so they do that to guide treatment recommendations. I didn't test positive for any genes but did have a variation in one of the genes. However, they don't yet know what, if anything, that means. They will keep my info and if more comes to be known about the variation, they would contact me. I received info about having my family tested for free as well for this variation and on how to enroll my info to help find links among people with variations. Runningcello-did you get info like that too? I think my cancer has to have a genetic cause as I was not overweight, active, ate pretty healthy, and was using natural products (soap, deodorant, shampoo, etc). The only risk factor I had for breast cancer was dense breasts. I think in a few years, more will be known about these genes to better guide screening.
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Nomatterwhat & Chrissie - I see from your profiles that your tumor load was large as was mine. Do you mind sharing if you had multiple tumors. I had 4 in my lefty, a combination of IDC and ILC. Were you told how long it was estimated your cancer sat there undetected? Were you perhaps told that oncotype score does not apply to you because the 500+ women on that study had single tumors? Sorry so many questions. I seldom see profiles like yours so I got curious.
Everyone else - Hope you are all doing well, and that those of you in cold regions are managing to keep warm. Loved that picture you posted MJ. You and Ruth are quite the travelers, good for you girls!
I go for days with not much to say/write, but I read often and send best wishes for permanent recovery to all my BC sisters. Sending warm hugs from SolCal where Spring is starting to make an appearance - 2 adorable bunnies showed up in my backyard today! Nisa
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Nisa, I felt a lump on the right breast and the mammogram said it was a 1.9 cm. I was thrilled when the surgeon said a lumpectomy was all I needed. If only that were true!!!! When I woke up from the lumpectomy the surgeon told my husband and I we had a major problem. I looked down and my right breast was 98% blue and she told me it was full of cancer. After further testing, there was also calcifications in the left breast. I had ILC of 7 cm and 1.9 cm of DCIS in rightie as well as "things" in the left breast. She told me that if I didn't have a BMX that I would be in the same spot in three years. Since I am a "one and done" person, I chose the BMX!!! She estimated my cancer had been in the right breast for probably 7-8 years and I was two months pre-54. No tests detected it. It was by the grace of God that I felt the lump by turning into my driveway and my breast rubbed against my arm. My Onco told me that with that large of a tumor and having more than one that the Oncotype test was not needed. I was headed straight to surgery, chemo (CT) and radiation, in that order. Arimidex did not work for me. I start Femara in a couple of weeks. I have been through a lot and learned a lot, but I am still alive and am thankful every time I get out of bed.
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I am back home.....where it is cold but is not crazy-snowy like the poor East Coasters are having. I am getting back in the normal routine. I had my yearly mammogram Tuesday. The technician didn't see anything of concern, but I am waiting for the sign off from the radiologist before I start celebrating. I'll let you know so that you can have a toast with me (or an ice cream cone, or chips.....you can pick the indulgence of your choice
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Welcome home, Ruth! Crossing my fingers for your mamm. report. By the way, is that yet another new haircut you're sporting?? It's cute!
Nomatterwhat - I hope you have as good an experience with Femara as I've had so far. You've certainly been through plenty already!
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Thanks. My stylist convinced me to go really short last summer, which I didn't like....the back felt like a boy's haircut. I am trying to grow it out a little.
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Ruth - you look very cute in your new hairstyle. Crossing fingers for another clean bill of health! Great to hear weather is not too bad at home. We don't know what to make of this early spring in SoCal. i think I'd like to have a bit more winter before the heat sets in, maybe 2-3 more weeks of wearing pretty long sleeve sweaters during the day.
Nomatterwhat - thanks for sharing your story. Yes, you have gone through a lot and recently. Nice you are about to start a new chapter. Let me know how it goes with Femara. My onco recommended a change from Arimidex that has caused me osteoporosis. I said I will consider Femara in October, after 2 full years on it. I am having new pain, right on my spine in the lumbar area. i live with it but it bothers me.They are scanning the area next week. Pain is no fun, it robs you of so much.
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Ruth - ready & waiting to toast & have chips with you : ) You are an inspiration to all of us and always so helpful!!
Nisa - sorry to hear about your pain. It's disconcerning since I'm starting Arimidex (not my choice) in a few weeks. Having a density scan next Sat.... I've had the aches & pains with Tamoxifen, so a little concerned about the switch.... but it's better than the alternative. I get to start the new meds right before vacation, but I've been reassured I probably wouldn't notice any side effects for a while. Hope that's true. Hope if you decide to switch meds, it will help with your pain issues!!!!
Hope you are all staying warm!! It is BITTER cold in Chicago today... it's warmer in Alaska! Crazy!!
Hugs to all!
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Yay active treatment has finished for me today
2 surgeries, 6 lots of chemo, 20 radiotherapy sessions and now on 10 years of tamoxifen. As far as I know I am cancer-free. I am fit and healthy and raring to get on with life. I have a place on BSc Hons in Podiatry university course starting September 2015. I am so grateful that I found the lump when I did and listened to the voice that told me to go to the doctors - it saved my life. I am grateful to have a BC that does have a favourable prognosis - other women haven't been so fortunate. I will continue to take my tamoxifen, do my daily exercise, take daily vitamin D supplements and aspirin every other day. I really can't do much more to keep the beast at bay. I have to have faith that the belt and braces treatment I have had plus what I am doing will keep me cancer-free.So to all the ladies that have received this earth shattering diagnosis, keep strong and keep going as this awful time will end xxx
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Sandie, congratulations on finishing treatment. I hope tamox. works out very, very well for you, too.
Terrific to hear about your podiatry studies that commence this fall!! The world certainly needs good podiatrists (speaking from experience) and I'll bet that you'll be terrific. Enjoy your studies!
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yay Sandie so glad you are all done. You have a great attitude and that's so important. I will be done on March 17th. I already started tamoxifen and so far so good.
Hugs
Nancy
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Nancy, I'm happy to hear you're doing well on Tamoxifen. Long may it rule! How are you doing with radiation?
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Congratulations, Sandie. Onward and Upward!
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Hopeful thanks for asking. So far so good with radiation. I have had 12 treatments with 21 left so still kind of early. I am getting a bit itchy but that's pretty much it. Hope the femara is kicking cancer's butt for you lol.
Nancy
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Yes, it is still early days for you, Nancy, but I hope itchiness is as far as it goes for SE for you. Are you having axilla & supraclavicular nodes treated, too?
So far Femara seems to be working great. Just had another US this week that showed a LOT of shrinkage of both the node (YAY) and the tumor. Of course, the proof of the pudding is in the path. report and there's no telling how this will translate into clearing the node, which is my #1 goal. I have an appt. Tuesday a.m. with my BS and we have a lot of ground to cover, including whether the results are trending strong enough. Both my MO and the PA are pleased, though. I'm crossing my fingers...
I wouldn't mind being able to get out of some of the rad. as well - I'm down for 7 weeks (including boost) and 4 fields and that's beginning to seem like a lot...
I'm not concerned about the process but I am quite concerned about the long-term effects. 0 -
that's great news hopeful. I know you have a little way to go before your lumpectomy so I am hoping even more shrinkage for you. That would be wonderful.
Yes they are radiating the axilla and supraclavicular node area as well. This one little positive node bought me my chemo ticket and more radiation sessions. I did worry about long term effects (still do), but i worry more about the beast coming back. Oh how I hate this disease. Hope you have a great weekend.
Nancy
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Yes - we both got out tickets punched for the full ride, didn't we? (Although I am hoping to avoid chemo and just maybe some of the radiation if the node clears up)
You have a great weekend, too, Nancy. Thank you for your support.
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NisaVilla-I think my tumor was there a long time but no one has told me that or given me a time frame. It was not seen on mammo in 12/13 (I felt a lump at the beginning of 2014 but watched to see if it went away with my cycle due to my fibrocystic breasts). MD sent me to breast surgeon to follow me/do US. Radiologist did US and said it was nothing. I said it must be something and asked if I should have more testing. He said since I didn't have a family history, MRI wasn't indicated. In hindsight, I wished I would have pushed for the MRI, but I thought the lump was just my fibrocystic breasts. I had a 3 month follow-up with the breast surgeon. She felt that it felt different, and I did feel in the past weeks that it was feeling larger. This time I had a different radiologist who did 3D mammo, US, and biopsy. She thought she would find DCIS. She took a large biopsy hoping to find something. She later told me when I asked how this was missed that my tumor looked benign on the mammo and US but there were changes from the last time and when you put the whole picture together, things were suspicious which is why she did the biopsy. I did have some DCIS that was Grade 2 but the majority of the invasive tumor was mucinous which I have read is not always found so easily. I did have some micropapillary features initially, but after chemo and surgery, there wasn't enough viable cells to test for the micropapillary aspect but many mucin pools left. I am a rarity to have HER2+ with the mucinous tumor as majority are HER2-, plus my staging is rare too T3N0Mx. I had a second opinion of my surgical pathology report at Mayo Clinic, and I was described as an interesting case which is not what you want to be as that means to me that you are the rarity.Chrissie
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Chrissie, so sorry about the delay in dx. That simply should not happen.
Happy Valentine's Day to all of us. I hope your day is filled with love and kindness.0 -
Sandie - thank you for sharing.
Happy Balentines Day to all
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Yes, this is one time when the less interesting you are, the better!
Well, I finally got my official 'all clear' on the mammo letter from the radiologist, so go out and eat/drink/or buy something fun in celebration with me.
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Glad to hear that, Ruth - finally!0
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Hi Ruthbru - so glad to hear that. I rarely post any more - so many new people, so many new technologies and treatments. I don't even know what they mean. Birads? Neulasta? all the new targeted stuff? haven't a clue. Mammo comin up. and very last visit to onc, ever, in a week. Yikes, kicked out! ick! but also great. I am so very glad so many new things have come down the pike - except, of course, for stage 4s. I often think of Apple, Konakat, those very funny and totally honest women who are gone. When I became brave enough, I visited the stage 4 threads, because so many there are totally honest and they are an inspiration and model. Their bc is very different from stage 2, but people at stage 2 have progressed, and so could we have. We are very lucky. No wonder they don't want others to post.
Yes, in years to come our tx will seem so crude and barbaric, but right now we are alive and kicking! We might have made bad choices, if filled with enough fear. You have always encouraged people to carry through with the protocols developed to add extra layers of insurance. Which was explained very clearly to me by my onc. His words seared into me and he only needed to say them once: cancer cells are like dandelion fluff, blowing in the breeze and they can land anywhere, and of course, then, if they land in a distant spot, it's incurable. So I was grateful for chemo - to reach those possible dandelion seeds, and for rads, to get any stubborn ones remaining around the MX area. And even for the flippin arimidex.
So glad you chose to go the route of loving yourself to do all you could - me too - i was never so kind to myself as during that time - or happier, because my tumour was humungous yet apparently (I knock on wood) never went anywhere. I attribute that to the cabbage juice! just kidding, don't drink it. No, I had a gift from the universe. I wonder if enough love turns on your immune system and you heal?
Just a thought. May all your mammos be clear!
Arlene
ps - this should properly have been a PM to Ruth, as our path has been similar in time and other ways. Nice to hear from you Ruth - and keep on playing those games!
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Arlene - I hardly think that a single woman on this board is in any position to judge another woman's concern about anything, including losing her hair. I don't consider that "whining" and would hate for anyone to feel pressure to self-censor just because you do.0
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Hi Arlene, great to hear from you! Did you ever get back to that swimming pond?
Hopeful, I think that her point is that, even though we all have gone through a lot of really hard stuff, we are fortunate that our treatments may really, truly cure us. I have several stage IV friends, and I stand in awe of how they manage carry on with such positivity as the deal with things that I can't even imagine.
Much love to all!
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I agree with Hopeful. Every heartache is painful to the person living with it.
I am celebrating with you Ruth! way to go girl. Cute hair and cleat from BC - that's the life! LoL
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I read this thread regularly but have never posted here. Hello to all!
Congrats Ruthbru and Sandie!
Clarrn, we have the same BMX date:) I did not have reconstruction, chemotherapy or radiation, though. You are strong. Tamoxifen has been relatively easy for me for 10 months. Hopefully you will experience the same!
I feel that the stage IV threads are different. However, It's important to recognize that those same women post on outside threads as well - including "Hair, Hair, Hair...". They offer advice and empathy on many non-stage-IV threads. Many of them have been where we are...They just have a different perspective and need a safe place to communicate with others who can not be cured. We have lots in common - we are all living with this unpredictable beast.
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Hi Daisy! Are you buried in snow? What a crazy winter it's been!
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Thank you Ruthbru!
Oh yes, we are buried! My husband loves blowing and shoveling snow - just misses building forts with the kids (now at college). I am lucky. Snow is still beautiful for me
I chuckle - he even cleared a path across the back yard into the woods. More snow on Tuesday and next weekend... I live in the suburbs of Boston and go into the city for treatment - it is much tougher in town. Where can they put 6' of snow? They are trucking it to "snow farms"... The subway system is old and failing... and keeps shutting down... I would buy snow shoes if I lived in town.You were in Arizona for vacation? My husband has been traveling there two weeks every month for work (new job headquartered in Tempe). He doesn't wear a jacket! Sunshine can really elevate your mood - hoping you saw lots!
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