CALLING ALL STAGE I SISTERS
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Stage 1 sister here. I just went through my 3rd chemo treatment yesterday 9/2/2014. The worst part of this experience (besides having chemicals pumped through my veins and the nausea) is the menopause side effects. I can hardly sleep at night and have bad hot flashes. Is there a forum on here for women experiencing menopause and need support? I'm 40 years old and never thought I'd be going through menopause at this age so I was not prepared.Thanks.
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Redheeled---I don't know of that site, as I had a surgical menopause 10 years ago for a non-cancer related issue. Surgical menopause was awful hotflashes, for which they gave me estrogen patch......big mistake even thou I tapered it down as fast as I could stand it.
Have you searched on Chemopause? That may pop up some threads to help you.
Welcome Marie---sorry you are meeting us all under this circumstance of the BIG C, but WOW, two broke ankles---I think that may have been worse than what you are about to go thru. We are all different, and react different to treatments, but I was surprised at how easier this was than I had imagined. And I am a big pain wusey about all things medical. Almost didn't even have my core biopsy since they would use a needle and I was so sure it was nothing........
This is a great, supportive, willing to share bunch of folks! No substitute for your MD and medical support team, but loaded with the inside scoop on stuff they may not think to tell you about, or how to solve little things that pop up. And we are great at letting you know that what you have experienced is a shared experience with someone on this site----- We should give a Prize if anyone comes up with something new! LOL>
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Thanks Redheaded1, I'll check under chemopause.0 -
Thanks BosumBlues. I will contact my PCP.0 -
Hi Girls - Rosecal that stats you wrote above seem very much in line with the stats I was given by my Breast Surgeon when we reviewed my two biospies results and images from the Mammos and Ultrasounds - where she said you have two small tumors - one about size pencil eraser and other right next to it - a bit smaller (together is totaled 1.1 cm) and was located in the most common area (so I was told) right breast - upper outer quadrant about 3 cm below the surface of the skin and not close to chest wall and this is the same 11:30 pm location where the Head of radiology at same hospital took my first breast stereotactic biopsy in 2007 - few days before Christmas - that was my FIRST Mammo and wound up being told - you need a biopsy - which they did awful job - had to have stitches - wasn't able to get bleeding to stop - wound up with whole breast yellow, green and purple for over a month and was told - just have suspicious cells but not cancer - I always now wonder as the DX just got in May with the brand new 3D equipment - was the start of my grade 1 tumor back then - hmmmmm makes me think it may have been - as in 2007, they had a very difficult time getting the needle to get to the cells they wished to examine and they literally carved out a block of cells and I was only numbed - horrible experience and since then been monitored closely - so with the slow growing cells - someone sent me a chart that by time a tumor can be detected on screening tests (mammo and ultrasound) it may take 7 years of slow growth to actually become visable - however now the 3D equipment finds more things (some not always cancer and some unnecessary biopsies that cause lots stress, pain and trouble for everyone but they have to test things),,, I was told that a grade 1, stage 1 early stage tumor historically falls into the 20% recurrence range with just taking out tumor - either Mastectomy or Lump + Radiation 6 wks (both have same 20% average recurrence with surgery alone) - so in group of 5 women with stage 1 grade 1 - 1 would get recurrence in lifetime and others fine - or in group 100 - 20 get recurrence and 80 women all do fine,,, that is what I was told - and yes no one knows who will do well or who will be one of the unlucky 20 and no way to know if stray cancer cell(s) made it thru secret pathway to other area and bypassed the lymph - which is why protocol is to take the Tamoxifen or HT - I definately get it - i just wish all the research $$$ would go less to the decorations for the events and more to the research and funding to develop a pill that doesn't cause so much rapid aging and SEs that make veryday so much harder - I also know that the women who tend to opt for Lumpectomy & Radiation vs Mastectomy typically tend to get recurrence more so then with Mastectomy as depends on removing tumor cells and the surgeons ability to obtain the required "clear margins" which unfortunately is hard to guarentee... we all have to be our own advocate and go out and seek info and if having SEs - talk to DR and see if they can suggest anything - natural remedies too - meditation, changing thought patterns, being aware of your body and treating yourself with love and being kind to your self as you and we are all so fragile after BC. xo
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Sparkle, same size as me 1/2 size of pencil eraser and same location, and same stage. Mine was closer to chest wall. I've seen enough of my Community Cancer Center and know I want to leave as mall as possible opportunity of going back into active treatment. There are currently 3 Aromatase Inhibitors and 2 SERMS that can be used. (You can't use AI's unless you are post menopausal). I'd be optimistic that one of them will be manageable for you. I am about to start my 4th month of the TEVA generic of Arimidex. ( I switched from SUN manufactured in India) My hot flashes are few and far between, I have no hair loss, I get an occasional headache, which most likely is not the drug and my insomnia is something I have struggled with pre-cancer, but it is worse. I'd say try one, and if it don't work, try another one, and if it don't work, decide what to do. I know I was inactive and over weight, so the odds are not in my favor. How will you feel if you don't try, and you are that 1 in 5? Will you kick yourself, or just take it in stride??? You know you best. And my MO told me my cancer had been there 6-9 years too.... and I too had a prior questionable mammo years back, but get this--it was the opposite breast. I asked radiologist about it and he said that the spots couldn't have gone away, but the standards for when they get mentioned in a report changed..
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Marie, I am also in the MA area, south of Boston. You have had a rough year. wow! 2 broken ankles and then this.
I started on Tamoxifen on 8/20 and for the last 10 days or so have had diarrhea and cramps apart from 2 days when I took pepto bismol so I could go to work. Now its back again. At the same time I am putting on weight and bloated which really upsets me as I was ok with my weight even when I started rads at end of June. If feels like its just one more thing I have no control over at the moment. I have been exercising and eating quite healthy although I have been hungrier than usual. I am seeing the fitness manager at the gym where I go on Monday to see if he can find a program to help me. Its difficult as I feel tired too.
If there is no improvement I will try a week off the tamoxifen to see if that makes a difference. My MOs plan is 2 years followed by an AI for 3 to minimize hair and bone loss. I did the CancerMath and have a 15% chance of popping my socks in next 15 years from cancer with no pills and 8% of recurrence with pills based on oncotype score. I am going to keep up with the pills for a while but I will be nearly 75 in 15 years and do not want to spend the next 10 feeling lousy so I may eventually make a decision to discontinue as I would like to spend some time enjoying life.
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Bosum, I was expecting to be put on an AI as I went through menopause 10 years ago but due to an accident I was left with scar tissue, poor blood flow I guess, and thin hair on the top front of my head which got worse during menopause. My MO took one look at my hair when he first saw me and mentioned it. I didn't think it looked quite THAT bad LOL. He mentioned it again when deciding to put me on the Tamoxifen in spite of my age so I guess it may be less of a side effect. Also its not as hard on the bones and they all seem to have their own ideas on treatment. As for the chance of recurrence without the pills he has never said anything. I just picked up on that through reading threads here and doing the calculation on CancerMath. I really have no idea how much is based on knowledge and how much is sheer guesswork.
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Welcome Marie! The onco test is to help determine if chemo might be beneficial to you.
Vit D levels up, but still not normal. Will be taking more supplements. Have not heard back from one yr mammo results, but since it's been a week and no call, I am taking that as "no news is good news!"
Wow, it's been almost a yr since my DX. See my RO next week and BS following week. My MO convinced me that I need to get a colonoscopy done, since I have never had one and am 59 yrs old. So, I will be scheduling that soon, also, since my deductible has been met for the year!
Thanks for the cancermath link.
Tamoxifen has really been easy on me, for what it's worth to anyone considering it. I have had a hard time losing any weight but have managed to keep any additional lbs. from piling on. I have reduced my food intake significantly though. No sign of hair loss, although I am just now getting a good start back after chemo and I do have very thick hair.
Have a great week-end ladies!
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RoseCal, I'm with you on the hormonal treatment--said no from the beginning after researching medical journals and doing the math for my case (oncotype # 12, age 71 then, other stats below). No need to invite stroke, clots, etc. into my body--I certainly can live longer without them! And the med onc I saw was pretty much in your gal's camp too. And at approaching 2 years I am fine.
As for that profile that both your med onc and mine ran, well it is sponsored by--why am I not surprised?--the group that produces and markets the drug! (I learned this when I tried to access the algorithm on my own--only MD's can do so, it seems.) When the onc showed me the "results" for my stats, I questioned why my health condition was listed as "fair," when she had just told me earlier that my health is excellent. Her answer: "The form only permits 2 choices, fair and poor"! Talk about stacking the deck and questionable marketing practices!
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Pretty tired and just nauseated today for some reason. Its raining here so its a good movie day. Resting up before re-excision on Wed.
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Welcome Marie yes very small world ! and hello everyone Marie do mind if I ask where your going for treatment ?I got my pathology report today and I would love some interpretation help please ! Here are the findings:
Size: .15cm
histologic type: mixed ductal and lobular ( what does this mean ??)
histologic grade: 2 (6 to 7 points)
tubules: <10% (3 points)
nuclear grade: 2 (intermediate)
mitotic count: 1 point
eic: positive (what does that mean ?) (eic stands for extensive intraductal component)
final margins: > .2cm deep (does that mean clean margins?)
T1aNO
Can anywhere interpret this for me ?? Thanks everyone !
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ganz - I not familiar with all of it so I won't comment except to say .15 cm is about as small as I've seen. How the heck did they find that?
I've weaned off the Effexor hoping against hope to drop a few pounds. It has been hot flash city around here. My new theory is that hot flashes burn calories so bring 'em on! (There is no medical basis for my theory however.)
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BosumBlues--I agree with you about grade 3, but RoseCal is early stage and grade, not a 3. As we all know, each case is different (which is why I gave her my stats, much like hers, and also my age). Also different is the decision each of us must make about doing or not doing hormonal therapy. But in the end, making an informed decision is our responsibility, accomplished with the aid of (but not coercion from) our medical advisors, including the ones who know us best, our primary care physicians who have been following our case all along as observers of the whole picture.
BB and Ganzgirl--As it has been described to me, the lobular carcinoma resembles a web, or a spread-out hand, rather than a "lump." The way it presents might account for the oddness of the dimensions. How does one measure a spider- or cob-web, after all?
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bosom...when I had the breast mri in june they said the cancer was 5cm..but after mastectomy they said it is now .15cm..makes me nervouse because how does it go from 5cm to .15 ??? I know I don't need radiation but Im unclear about chemo
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I was just mentioning to my sister the SE's for HT and that they want me on it for 10 yrs, I can't wrap my head around the stroke issue and the aging physically, she asked me if after I'm done with it will it reverse and I go back to looking young again. I told her no I don't think so, oh how I wish!
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Bosum, I hear you about looking good makes me feel good. So sorry you are feeling sad, I bet you don't look bad as you think you do. We are our worst and harshest critics. I want to give you a hug right now. Would you settle for a virtual one? <hug>
I haven't started on any HT yet but the dr is recommending Tamoxifen.
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I want to hear more about this rapid aging too. I see my MO tomorrow but doubt he would admit Tamoxifen does that. I DO feel like I look about 10 years older but not sure if it is the stress and weight loss or the med. For sure it dries my skin. Even with that said, I will take it because it is the biggest gun I have to fight this.
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Nicollet, I just saw your post asking if the pain ever goes away. I had a lumpectomy on July 18th and had a moderate amount of pain after. My re-excision was on July 30th and I had more pain afterwards and it got worse a couple of weeks after surgery. It was agony to just walk for a while. I did wear a bra 24/7, still do. I am happy to report I feel MUCH better now! I still get a little ache but nothing like it was. You may have had your surgery by now and I hope you are doing well. Praying that you are okay!
Sending hugs,
Sandy
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Nicollet, I just saw your post asking if the pain ever goes away. I had a lumpectomy on July 18th and had a moderate amount of pain after. My re-excision was on July 30th and I had more pain afterwards and it got worse a couple of weeks after surgery. It was agony to just walk for a while. I did wear a bra 24/7, still do. I am happy to report I feel MUCH better now! I still get a little ache but nothing like it was. You may have had your surgery by now and I hope you are doing well. Praying that you are okay!
Sending hugs,
Sandy
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Nicollet, ok, I'm all over the place this morning trying to catch up. Just saw your post about your surgery scheduled for this week. I hope it goes well. You will be in my thoughts and prayers.
Sandy
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Bosum--you said you were going to ask your MO to move you to Femera---my onc told me that Femera is the one closest to being Arimidex. Just tought you might want to ask about the differences between the three that are AI's...Tamoxifen is better non your bones, but has higher stroke/heart risks, or so I am told.
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Bosum. I am taking a baby aspirin with the tamoxifen for the stroke factor. I am thinking I will try and stick with this and then have a rethink if my MO decides to switch me to an AI in a couple of years. I was clearing out a drawer I had not been in for years and found some pics from my mid 40s.I looked so young The difference between then and now is scary without additional problems of rapid aging and aching bones.
i would be prepared to take a little extra risk if it helps me look and feel less old. QOL is important and I just want to still feel like me. If the Tamox works out I may eventually ask about staying with it rather than switching to an AI if the difference in effectiveness is quite marginal, although like everything it comes with its own set of risks....
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Where did you read about rapid aging wikth Tamoxifen, I haven't seen it yet!!!
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I am hoping it will be OK on tamoxifen. Seem to hear more about the rapid aging on the AIs. Guess I will find out.Only real problem with tamox.so far, and its early days, seems to be the upset stomach.
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Good Morning ladies !
Got the official report when I met with my onc Monday. All great news..so, OFFICIALLY no chemo, no radiation and tumor was much smaller than they thought (it was the lcis that was 5.2cm, the invasive cancer was only .15cm !) SO the plan is Tamox, even tho they said in the beginning I was not a good candidate for it ??...but I will go with that. My MO also said having my ovaries out was a good idea..so now Im trying to find a gyno . This is the best news we have heard all year !
But of course, the cancer stills makes you think crazy things persistently. I cant help but worry about mets down the line. Normal thoughts right ?
My pain from the MX is getting better everyday..got the ok to drive but WOW was it painful..I dont think Im ready for that yet. I go see my PS next week...hopefully for the first post op fill...lets get this show on the road !
Hope everyone is doing ok and keep your chins up...we will make it thru this, not matter what our treatments may be
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Ganzgirl I'm with you about driving. I was told if I was off narcotics I could drive but when I did I almost had an accident getting out of the driveway and had to pull over and let my daughter drive. I think if we are too sore to react quickly we should not be driving.
As for worrying about cancer down the road, totally normal. I also had a small tumor size so no chemo and almost wished I could have had it so I wouldn't have to worry as much down the road but finally I am at a place where I am just going to let it all play out as it will. Worrying wont get me anywhere.
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I found that seatbelt covers helped with driving. Got some sheepskin ones from Amazon but there are also synthetic. Better than nothing. I finally took mine off for the first time today as they annoy DH. It was so helpful during rads although I only had a lumpy not mx.
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Loral.......let me jump in here and say that between the chemo and now the Tamo I feel & look like I have aged 10 yrs in 4 yrs. Yippee !! I am one of the lucky ones that is suppose to take the Tamoxifen for 10 yrs instead of the standard 5. Oh well at least I am still here to enjoy life.
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Norma Jean, that is what my Onco is also recommending for me. Chemo and tamoxifen for 10 yrs, it frankly scares me, I know call me vain but I don't want to age that fast!
I am truly debating on doing the tamoxifen especially for 10 yrs!
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