CALLING ALL STAGE I SISTERS
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Hi Lucybell,
I was ILC, 2mm, stage 1, grade 1, 0 nodes. I had a BLMX also. I notice your on Tamoxifen so am I, although they told me it was up to me on taking it.
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Hi smo23915,
How can something as small as 2mm be invasive. So tiny. I have been on Tamoxifen for 3 1/2 years and I want to stop taking it because I am so tired all the time and metabolic issues. My oncologist said he would not recommened that I stop. I went off of it for 7 days and I felt like my old self again. He is recommending AI's next for me. I am not looking forward to that either. I read somewhere that it might not be as effective on ILC.
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Hi
Stage 1 Er+ Progest + Her 2 -
now Stage 1b Er+ Progest -
Her2 +
Hopefully 1 + 1 does not = 2
Thanks its baffling sometimes being a 1.
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Fun thing
I had breast tumor ER+PR+HER-, yet the micromet to 1 lymph node was ER+PR+HER+++(100%) When I had first biopsy the breast tumor tissue removed was not big enough for all tests to be done so only ER and PR were tested, HER was tested from node tissue. After surgery the breast tissue showed HER-
I started as Stage 2a then went to 1b (because it was a micromet less than 2mm in 1 node) . I am grade 3
I am still baffled by the likely explanations of one being positive and the other negative.
Vivian
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Vivian, I agree. I am like you only no node involvement. It is confusing. Lucybell, it is a decision only you can make. I have been on Exemestane for two years and the joint pain has been the worse! Now due to bone lose, my BS wants to start me on Tamoxifen, but the issue of ovarian cancer is there with that drug. I have no clue what to do.
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hi ladies! This is my first post to this thread. I start my first TC treatment this Friday. I'm set to do 4 rounds 3 weeks apart, then tamoxifen for 5 years. My oncologist sent me for a second opinion last week. I think he wanted me to feel comfortable with his recommendations. Although it's a stage 1a cancer (on the threshold of a stage 2 at 2cm/ 1.5/ 1.5). I'm 37y/o and my oncotype score came back a 32. It a high recurrence risk. 21% with tamoxifen and cut to 14% with chemo added. The 2nd opinion MO actually recommended dense dose with TCA for an extra month. He said i could go that route if I wanted to go all out, but my local MO thought that it was unnecessary and we were being aggressive enough in treatment. Since there is no data to suggest a benefit of one over the other for 1a cancers, I decided to forego the extra risk and go with my local MO's recommendation. Has any one else come across this?
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Sunshower, sorry you had to find us, but glad you are being pro-active. I too had TC, 4 rounds, 3 weeks apart (so glad it's behind me but it wasn't as bad as I had thought it would be.) Know that for me, my fatigue was cumulative so by the time round 4 happened, I slept pretty much round the clock for several days. I had my treatments on Thursdays-Friday was OK because the steroids were still coursing through my veins. Sat & Sun weren't too bad, but Mondays were down days. The 1st Monday, I worked, almost 5 years later, we still come across "Black Monday" mistakes here at the office. It's become a big joke, thank goodness. My oncotype was 42; I had TC, radiation & I've been on Femara since Nov '09--counting the days till Nov 16 '14 when I pop the last of those puppies. Good luck on your journey. Keep us posted!
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thank you for the encouragement...just stressing tonight. I was supposed to start my first treatment tomorrow but my insurance company had a issue with me having it at the cancer center and may be postponing my treatment...I already took the steroid pills and have been getting mentally prepared, cleaning the house and getting a sitter for my 1 year old. A friend of mine even arranged her schedule to come with me...now I have to try to litigate with my insurance company In the morning...I just want to get this all over with...
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If I posted my thoughts about insurance companies the moderators would have to come in with bleach & a scrub brush. But know - that this too shall pass. Right now, it feels insurmountable. When you are the other side of it you can breathe though, really.
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Joni - since we have the same MO, I'm surprised you are looking forward to your 5 year anniversary on Femara. She keeps intimating to me that 10 years on AI is looking like my future once the study is finalized. Has she not talked to you about this? Maybe it's because I'm a big worry wart!
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Oh she's mentioned it, but I am not buying into it
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I had a hard time with AIs the first few months, but things have settled down since. I don't feel like 90 year old woman getting out of bed anymore. I still have some stiffness in my hands upon waking, but not as bad. The worst, though, is that my hair on top has thinned. Can't even enjoy my new, short, undyed silver curly hair.
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My oncologist is hinting that I will be on medication for up to 10 years. I am reading and hearing more and more that ILC recurrence is more likely after year 5. Is that because most docs stop medication at year 5? Regardless, I would hate to go through the meds, get off at year 5, then find a met at year 6. I've seen posts in the ILC section where this has happened more than once. Fortunately, my oncologist is part of a group that performs lots of studies. Maybe they have a "maintenance" drug out there that doesn't have the side effects. I see my doc in March for a follow-up. I think I will ask him.
I notice that my hair is thinning on top (hate that), and knees are a bit stiff in the am, but other than that I am good. Just started noticing these things a few weeks ago. Counting my blessings that I haven't had to do chemo or rads.
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♥
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Just wanted to say HEY and hope everyone has a lovely weekend!
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Hi Bosum - The fear or recurrence really sets in after active treatment ends. It is very common. It does improve as time goes on, but it will always be a reality for those of us with invasive cancers. I haven't heard about stage 1 being more likely to recur than later stages. In her book After Breast Cancer, Hester Schnipper devotes many pages to the emotional aspect of this disease and it's possible recurrence. I learned about it on these boards and ordered it from Amazon. It is excellent.
How do we get over the fear? Honestly we don't. We just learn to live with it. I certainly don't minimize it at all. I fell off the emotional cliff from my fears. Counseling, anti-anxiety meds, Effexor, and time has lessened it tremendously. If it happens it happen. I've done all I can, it is out of my hands. It is a weird sort of freedom.
You might do a search for PTSD and check out the threads. There is a lot of discussion about it in the Relationships, Emotional Crises, Anxiety, and Depression forum that is towards the bottom of the topics list.
Not a single one of my doctors told me about the PTSD-like symptoms many; many; of us suffer from. I'm not sure why it is such a well-kept secret. Perhaps they all think we're irrational, emotional, hormonal females. My PCP finally came to my rescue, and he said he was treating four other women with the same symptoms and jokingly said we should form a club.
Please let me know if I can help with anything.
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BosumBlues - so can relate...PTSD.
Yesterday, hubby had surgery...same day surgery center...his surgeon the brother of my BS...same corner, same nurse, same anesthesiologist,...doing ok...my BS waves hi...but recovery...2 BC patients 1st my BS patient, he has such great bedside care, but she is asking for her daughter who us no where? What? 2nd young woman (under 30) is crying for her mommy and nausea...I excused myself and went outside to get a grip their journeys were begining.....but I remember all the waiting and unknown...my heart ached for them...
Focus on today and be grateful for pushing through...you did it...you are doing life!
Got great plans, moving forward, but I think flashbacks are too be expected...time heals:)
(((Hugs)))
Cindy
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Welcome Bosum...what you're feeling is perfectly normal
I remember the day I finished all my chemo and radiation this fear came over me NO WHAT???
I felt safe during treatments because they were working on me
It took few months to recover from that fear...but the fear doesn't go away it's just you don't think about it that intensely
Yesterday I had my 6 months follow up with MO.....Of course I started remembering
I'm really sorry I opened this thread but lately I didn't participate shame on me
Sending Hugs from cold NY ♥
Also they have programs for BC patients who do not have Insurance..What State are you from......I can get you some info
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Cindy...i know what you're saying...I had to go to that same place for other family members or friends
All the past starts coming back.....like you said same nurse or DR you know.
Hugs ♥
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Oh one of those EX stories
My girls are grown now but my ex paid child support until they graduated from College
They must have other programs...Planned Parenthood might help you
If i learn something i will post right away
If you can get regular Medicaid they will cover your BC related expenses
I have been on AD and Anqiety medication but I already was before the DX so i can't blame BC
♥
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Bosum -I know that part of the reason for my crash was the fact that I was having recon and could do absolutely nothing physical for many months. And I do spend a lot of time alone, thinking as I mow or piddle at the farm. Not a good recipe for BC. I have read and reread my copy of the book and I'd love to pass it on, so if you want to PM an address (it doesn't even have to be yours) I'll send it to you. Since my diagnosis I have become a care minister at our church. We are a group of about a dozen people who do hospital visits and then as many followup visits with the same people as they need until that life event has passed for them. I get assigned the majority of the BC ladies. It has been my honor to get to know them, listen to their concerns, and support them however I can. I thought it might cause me greater fear to meet regularly with one lady who is end-stage. Quite the opposite is true. Getting to know her has been a great blessing to me. SO - for me I think exploring all the scary dark BC places has been a good thing. You know what - once light shines on the monster it is not so scary after all. (You know sort of like a vampire who is exposed to the sun. I'm not sure why that vision popped into my head, but oh well.
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I'm still in my night gown too
I give myself permission to be lazy when i feel like it
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I love it..............glad to know I'm not the only one feeling lazy today, but I simply went back to bed for a couple of hours. Wonder if Tamoxifen makes me feel tired??? Any other out there on Tamo feeling a lack energy.
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NormaJean....I took FEMARA for 5 years and didn't feel any SE
As far as I'm concern i raised my children I'm free to do anything or nothing
I'm still lazy but made 2 pots of soup..Beef & Barley and red lentil soup
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Bosum, I just threw everything I could at "it" and I'm rapidly approaching my 5 yr mark. Although I think about BC occasionally, I have adopted the "If it happens, it happens", re: recurrence. There's really nothing I can do about it & worry is like a rocking chair, gives me something to do, but doesn't get me anywhere! So I live life to the best of my ability! I remember feeling all squishy inside throughout most of 2009 & a good portion of 2010, so just know that eventually it should become a less focused issue!
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I am a stage one, grade 2, so i guess i belong here. I will know in a week or two whether i need chemo, depending on the oncotype results, or just hormone treatments, since i'm estrogen and progesterone positive. hugs to my sisters.0 -
Welcome to our sisterhood scary
We are here for every and each sister
Hugs♥
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BosumBlues.....I was on Arimidex then Femara and could not stand either one. I already have "high risk" osteoporosis and my bones hurt so bad that eventually I had to switch to Tamo. No SE with the Tamo like others have mentioned w/ the exception that I don't have the energy level I had previously. My Onco is also one of those that believe women within a certain protocol should commit to 10yrs instead of the usual 5yrs. I'm certain it's due to my Oncotype test Breast Score being through the roof. Oh well, I am thankful everyday I wake up.
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Welcome scary............I don't post often but wanted to welcome you to this sisterhood. We are all here to listen, cry, laugh and lift up when someone needs support or info. Don't be afraid to jump right in.
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