Ladies in their 40s
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Pebbles: I started a blog when al this started and called it "Young and Otherwise Healthy" since that is all I heard from every single one of my doctors. Two years later it has become "In an abundance of caution we are going to...." being said every visit it seems. It's all to take care of me so, it has to be done.
As to all the comments on the hormonal therapy, I find it very interesting how different care is throughout the nation. I'm in Florida. I started on Tamoxifen since I was pre-menopausal but was told I didn't need to worry about my ovaries and all can be monitored. A few months later I had to switch to another MO who HIGHLY recommended switching to an AI (Anastrozole) and shutting down my ovaries with Zoledex or surgical removal. The AI worked better with the lowest estrogen possible in your body and with the ovaries creating the most while they worked, it made sense. There was a reason that she didn't recommend the Z shot with Tamoxifen, but I just can't remember why now. t did the Z-shot for a few months but then had my ovaries removed last Dec. I had pain in my belly/side and thought it was a reaction to the shot and the removal did alleviate it ... for several months. The pain is now back and no one knows what or why, even with lots of scans, tests and specialist visits. Best guess is that it is the AI. I recently was switched to another AI because I developed the 2% side effect chance of high calcium levels, even with not taking calcium and vitamin d which is also highly recommended, and they can't figure out why on that either. That treat didn't start until a few months after the surgery either. The one I'm on now doesn't have any reports of developing it (hypercalciumia, I think it is called) and so far so good, along with dropping 95% of all diary from my diet I'm now in the normal range, although still on the high side.
Basically, there is no one great pill to take. It is really up to your stats and what your doctor recommends and believes in. I've never had hot flashes on any of these 3 pills but have always have had sore joints and muscles. (For what it's worth, my mom said she never had hot flashes through menopause, so it might be in my genes too.) I'm still on a Bcomplex vitamin since chemo time when neuropathy kicked in. I do notice if I go off that the neuropathy and soreness is worse. Or it could be my imagination. I've been more tired and a bit more "weepy" on this last pill though, which I'm not enjoying, but still doable. I can't blame it all on the pill though, might just be life right now....it's so hard to blame any one part of my life for anything!
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Hi all, hoping everyone is doing well.
PebblesV, the "young" thing also caught me off guard. So funny. I'm 39.
I was surprised at how emotional and nerve-wrecking the surveillance process is. I recently went for a CT Scan and Bone Scan and baseline with my gynae for endometrium measure , my MO wanted a baseline now that I completed active treatment. Waiting for the scan results was tough, even though I was fresh from treatment. The scans came out ok, big relief. I'm just wondering if it will feel like this every six months when I get checked! My surveillance plan is breast ultrasound, endometrium measure every six months, MRI every two years and seeing MO every 3 months for Zoladex. Anyone doing anything different?
Hopefully it's all just routine going forward.
Take care all.
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I too get caught off guard with the young comment. I am 46! Don’t feel too young these days.
It really is interesting how much the surveillance process differs. I haven’t made my appointment with my gyno yet but I will be interested in what her opinion is about endometrial monitoring. My MO said no baseline TVU is needed. He said “only for older people” I have a 6 month follow up with my MO and he said we would just check basic labs at that time. My next appt. with my BS will be a 3 month follow up but not sure the schedule going forward for imaging. I imagine it will put me on edge. I have hit a wall emotionally in this last week with starting back to work and starting rads. I don’t want to adjust to this new normal, I want to feel like me again
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Dani444 I know the feeling all too well. I too have been struggling with adjusting to a new normal. I consciously have to remind myself that it is ok to plan for the future and while I have to be aware of meds, Drs appointments etc. it's ok to live. Everyday I'm doing things that get me back to normal. I had been avoiding jogging, only walking (bmx with implants) and now I've started jogging. I'm full time back at work and carrying on. Most of the day I even forget about cancer. Just too busy. I've developed new eating habits and made some adjustments.
I have set an alarm to remember to take Tamoxifen! One day at a time... all the best
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So nice to hear others chime in, all of us “young” - I never thought I’d be called young in my 40’s but there you have it.
CC2016 - where is your blog? I’d love to see it! Otherwise healthy is so true too... it’s strange sometimes to think I’m fighting cancer because otherwise I actually feel fine. I hope the latest switch helps with the pain you’ve been having, sending healing vibes.
Palesa2018 - thank you for sharing your surveillance plan and I’ll keep you posted on mine, not there yet as I’m still going through rads. But I’ll be honest, I remember the anxiety with the CT and bone scans the first time and I’m most nervous about the surveillance. It’s so nerve wrecking waiting for results. Right now I feel OK because other scans came back clear, then we formulated a plan of action to fight the current bc and it was one I could get behind, and one I could still feel like me while fighting this. My biggest worry is going through it all again and something comes back worse. Trying not to go there. I’m doing all the treatments and I’ve completely changes up my eating habits to be healthy so should be fine right?
Dani444 - (waving hi from rads thread) - I feel that way too! Actually even though it’s a new normal I think I haven’t accepted that yet and keep thinking how much I can maintain the old normal while going through this instead of calling it a new normal. Except it will be a new normal with me taking tamoxifen everyday and I don’t take anything right now so that will be different. But even though I’ve been working from home and going to rads every week I still feel like it’s some temporary treatment thing in my mind and I haven’t accepted the new normal yet. I’ve completely changed up my nutrition but I’m calling that a focus on health instead of a new normal. I don’t know if it’s a psychological thing to help my mindset on it but the more I can feel like this is still me going through this and maintain my sense of self, the better I am. You’ve seen I’ve been getting through rads pretty well with no side effects. I’m trying to learn all the ways I can avoid side effects on tamoxifen if at all possible, I’m frankly most nervous about that.
RE: check in schedules and imaging, I don’t know mine yet but my ideal frankly is the less the better. I want to give myself a chance to heal and prefer to not have any imaging scans until a year after this all started. But we will see. I do see the oncologist next week after I’m done with rads to discuss tamoxifen and when to start etc. and then my PCP to hopefully establish some baselines more so I can monitor the effects of tamoxifen. I go back into the office the week after next since I’ll be done with rads. Not sure I’m looking forward to that or not - working from home HAS been nice lol! But I’m more productive in the office and miss the interactions with my co-workers a little bit.0 -
Good afternoon ladies - I was dx earlier this year at 41. I am 42 tomorrow. I found a lump during my menstrual cycle, it didn't go away afterwards. Met with my primary care in April, then off to scanning, MRIs, mammograms, PET/Cats, multiple breast and lymph node biopsies (with distressingly and extraordinarily long waits for lab results), nipple sparing skin sparing umx left with sentinal node dissection, and axillary lymph nodes dissection followed by medical port placement and now into chemo, then in probably April next yr surgery again to remove nipple (not clear margin) and TE replacement w something (not decide yet) and then and then and then.... It's been a crazy wild year. I am hoping 2019 is better. My husband has been my rock. Work has been accommodating. Chemo has been a little scary at times. I'm done 3 of 4 for A/C, and plan to start Taxol (paclitaxel) just after Christmas. We kept my diagnosis quiet from family until late May and early June until we knew more details. I set up a CaringBridge webpage to keep them informed. The support I've gotten from family and friends have been wonderful. I have had 3 family members with breast cancer but no genes with the mutations that are currently known. I have 4 co-workers that have been through variations of breast cancer treatments. I have leaned on their knowledge and support just as I have on many of the ladies (and gents) on this website. Thanks for letting me share part of my journey. MB1
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Hi. I am 45. I was diagnosed a couple months after my 45th Birthday. I am single no kids but I’ve always wanted kids which is probably foolish considering my age at this point, but deep down I had some hope. I have doctors telling me how I will be thrown into menopause and to be honest it breaks my heart a little. My LICAP flap surgery is tomorrow and I have a major cold so maybe that’s why I am a bit more down than normal? The BS and PS both say the surgery is a go with the cold/flu but waiting on the call from Anesthesiologist who has the final say. I am hoping the surgery will happen as scheduled as all this waiting is rough.
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MADDIEBRIE1 - thank you for sharing your story and so glad you have your husband as your rock, a flexible work situation and a supportive family! It's all about the silver linings and it sounds like you have many.
HPFULL - not foolish at all and completely possible to still have kids at 45. I'm 43 and my husband and I are going through some mild stim IVF (it's much less invasive and less expensive than the full stim IVF) to at least pull some eggs, create some little embryos, and have the option. Another friend of mine is 44 or 45 I think and single and also wants kids, I think she pulled some eggs to always keep that option too.
I was also told about early menopause which could result from chemo and/or hormone therapy like AI's or tamoxifen. Honestly that kind of heightened me wanting kids, as my husband and I were fine before one way or another, but as soon as I was told that option might be off the table, I decided to do everything possible to at least keep that option on the table! There's a lot of this that is about taking our power back, making sure we don't feel helpless in this situation, and that WE make the final decisions for OUR bodies. So here's what I can tell you that will hopefully help:
- My doctors are fine with waiting until we complete some mild stim IVF so I can collect some eggs before I start hormone therapy (tamoxifen). If I needed chemo, the onc was OK with waiting until I did that first. I think if you expressed your desire to have children, your doctors would be OK with waiting until you pull some eggs or something to preserve that option.
- The mild stim IVF is a walk in the park compared to the lumpectomy for the breast cancer.
- A friend told me the story of her friend who discovered she was pregnant around the same time she learned she had breast cancer. AND she delivered the baby, and was pregnant while going through chemo! The first doctor told her to abort the baby, so she sought a second opinion. The second doctor told her that in her second trimester the baby would be protected even if she did chemo, so I think that's what she did. She wrote a book about it here - my friend sent it to me, I haven't read it yet but plan to: http://www.hopefortwo.org/bald-fat-crazy-how-i-bea... - oh and now she is cancer free and with a full family!
- I have heard a lot of stories of women who take tamoxifen for a couple years, take a break, get pregnant, then go back on tamoxifen. One story here: https://rethinkbreastcancer.com/pregnancy-after-br...
Although there's some weird conflicting data - like this one saying tamoxifen results in more birth defects: http://theoncologist.alphamedpress.org/content/16/... but this one saying tamoxifen can help stimulate more eggs and embryos: https://www.webmd.com/breast-cancer/news/20030107/...
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We found out I was pregnant about 2 weeks before surgery, unfortunately, at the last check 8/6 there was no more progress or growth or heart beat. I had umx on 8/7, then a d&c on 8/15. Suckiest August ever.... family doesnt know about any of that part - I can only deal with one crisis at a time and the big C has got to be it.
We also had explored the options of freezing eggs or embryos prior to any tx in mid May, but ultimately had decided that if it was going to happen we wanted to take care of the big C first and leave the rest to a higher power. I do feel cheated a bit. This was our second miscarriage inside of 2 yrs and to have it happen inside the big C diagnosis - it has shaken our faith a bit.
We have a lovely extended family and we can always choose to adopt, foster, baby-sit and do other things to fulfil that part of our lives we didn't realize we were going to miss out on. (and while they are family, we have the furries to lean on as well).
I really do wish that not just the big C but fertility and options for preservation would have made more leaps and strides in this era of scientific progress. (I do science stuff but not fertility or C). I am really left wondering where all the funding goes sometimes.....
(Sorry - apologies in advance, way to political this early in the morning with out caffeine). MB1
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Lots of good info and hope 🤗 Thanks @ PebblesV
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Wow MaddieBrie what a hard August that was for you guys! My heart hurts for you. Sounds like you have a good faith in your Higher Power. Hugs to you
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It certainly was a tough Aug, but I shared my story not to discourage anyone from seeking the fertility conservation - I hope that my intent in my post was clear. There really is some amazing options out there for conservation and wonderful stories about ladies taking a tamox break, having a family, returning to tamox. Thanks PebblesV for sharing those links.
I am still grieving for a lot of reasons. My husband truly has shown in the last 2 years his compassion, support and really everything that we have been thru has strengthened our relationship. We have always talked and shared things, he was a tough nut to crack in terms of sharing what he was feeling. We talk more now about everything and have grown even closer.
MB1
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so I am reading your post and so far no doctor has said I am young at 45😢 😂 it’s been a rough week. I had surgery last week and the tumor was more aggressive than initially thought. So now I have a bone scan, a brain MRI or head MRI not sure what it’s called, a chest and abdomen MRI and and waiting on Oncotype results to see if I need chemo. I had spent so much time planning my work leave and getting caught up before surgery that I don’t think it hit me until yesterday at the MO that I have cancer. The nurse that took my blood was awful and couldn’t find a vain but so she kept digging around And hit a nerve while at the same time telling me that I had terrible vains that would never hold Up with chemo that I would definitely need a port if I needed chemo. During this whole thing I have forgotten to ask about freezing any eggs. I just broke down today and was like wow i have cancer is this even real? Maybe its all the anesthia leaving my system? Just wiped out and ocerwhel
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MADDIEBRIE - I am so sorry for your losses with the miscarriages, what an amazing strong woman you are, and what an incredible husband you have! I agree that we have a lot of other options. My husband and I just want to keep the door open for a family, but we've also decided that if we do everything we can and it doesn't happen for us, we will be content knowing we really tried and did everything we could, and be perfectly happy with our "paw family" I think there is a thread somewhere here where women are posting about discovering who their husband really is while going through all of this, and some are disappointed. How wonderful for you (and for me!) that we have strong, supportive husbands, I'm so glad for you that you do!
HPFULL - I remember this time, and it's honestly the most stressful. I went through it too! You will find a LOT of support in this community. FYI - I thought I was strong, and when I was telling my co-workers about the cancer, it all became very real and I cried. And when I got the call that it was more aggressive and in my lymph nodes, I cried. It is OK to feel exhausted and overwhelmed and realize you are actually dealing with cancer and break down. Have your moments, you deserve the good cries and being wiped out.
I had to do a bone scan and CT scan and more blood tests and meet with a geneticist and some social worker lady as well, and it was all so overwhelming. And then the anxiety of waiting for those results and oncotype DX results was probably the hardest in this whole journey for me, harder than surgery, harder than radiation, so I completely understand how you are feeling right now. You will get past this. Knowing is empowering and once you have all the data in front of you, you can develop your action plan and things will get better.
Currently I'm in warrior mode and actually feeling positive! For me the cloud lifted when my oncotype was low enough such that I did not need chemo, and my bone and CT scans came back clean. I've gotten through radiation with very little side effects, and have 5 years of hormone therapy to "look forward to" which I feel I have to do because of the positive nodes. But I'm researching ways I can try to minimize side effects while on that too, and there's a thread of all of us going through starting hormone therapy together.
No matter what the results are for you, you will get through this. My brother-in-law said it best, "Well, it sucks to have cancer, but if you're going to get cancer, this is one of the best types to get." Weird I know but breast cancer, even with positive nodes, has very strong survival stats. If you're oncotype comes in low and you don't need chemo, then your situation will be very similar to mine and I am more than happy to help guide you through it with what I've learned to alleviate stress and side effects. If you're oncotype comse in high and you do need chemo, I'll point you to the boards that were helpful to me when i thought I needed chemo - one girl who got through chemo with no side effects (even kept her hair!) posted everything she did and that was super helpful.
Oh on the veins I have that too! And now that they did surgery they can't ever draw blood from my right arm again, so my poor left arm is getting all the bloodwork done and I keep hoping they don't mess up my veins there. I'm SOooo sorry that nurse who took your blood was awful. It always shocks me when people are like that. I remember when I met with the geneticist, she said, "Well if you get this result it's GOOD and if you get this result it's BAD" (on the BRAC gene test), and I asked, "You mean it just means you have a higher risk right? It's not BAD..." and she concurred, so I actually told her, "You know, when you're talking to people who just learned they have cancer, maybe you shouldn't use the word BAD..."
OK I wrote a novel. Just wanted to say I'm here for you and know how difficult this time is! The good news is no matter what treatment is ahead for you, they should allow time for you to freeze eggs if you want to.
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thanks so much Pebbles. Your post gives me hope. Do I need to see a fertility doctor about the egg thing? I don’t even know. I am assuming but this whole thing has been a whirlwind. I am very interested in the thread about helping with the side effect of tamoxifen. What is the name of the thread. Hugs to yo
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Its weird, I have had waves of "feeling like a cancer patient". First was when the first biopsy results came in - it was a panic, worst case scenario in my head (I'm not going to spell that one out). The second after the 4rth biopsy results came in (panic at the disco time). The third actually when I met the medical oncologist and the fertility specialist in May this year. I didn't really have that "feeling like a cancer patient" after my 2 surgeries or during any of the scanning procedures (there were MANY). The fourth was getting the port and going to the chemo education class. And now without hair - I feel like a cancer patient.
The mind is a wonderful and horrible thing. I keep telling myself it's temporary. I'll come out on the otherside of this.
Hpfull- Check to see if there are any board certified doctors of Obstetrics and Gynecology, Reproductive Endocrinology and Infertility in your area. The clinic I went to, pushed me to the head of the line to accommodate the urgency of the diagnosis. Literally, I called to see if they had an appointment for the following week, but I was seen the same day several hours after my first call. The doctors and team I met were extremely knowledgeable and amazing. They really spent a lot of time with me. I think I had about 6 appointments total with them - initial meet and greet with paperwork, blood work. (That paperwork was crazy by the way - you may need a lot of info from your husband or partner to fill them out.) Sit down w fertility specialist and explanation of process. Ovarian reserve assessment and hormone panel for baseline. Met with the nurses who explained all the fertility drugs, watched a number of videos on how to administer correctly and on track specified timeline. The meeting w the financial counselor who went over what my insurance would cover and what we would be responsible for. Re-meeting with the fertility specialist to discuss my reasons not to go forward with the procedures.
MB1
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Just remember ladies....
You've got this!
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well said cc2016
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I notice a lot of women Posting on this thread are taking Zoladex in combination with Tamoxifen. Just curious if any of you were offered exemestane as an option and if so what factors lead you choose tamoxifen
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cc2016 that is an awesome quote
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Walden1 - I'm currently on Exemestane. I had different MO opinions/options given though than what many here say. What I was told is that pre-menopausal women take tamoxifen only or Zoladex and an AI. That there was something in tamoxifen that worked with the estrogen in the ovaries so that it didn't need the ovaries to be shut down. (I'm now almost 2 years out from this conversation so don't remember all of it exactly.) I did tamoxifen for a few months, wound up switching to another MO who HIGHLY recommended going on an AI because of the estrogen factor and my high ER+ numbers. So I switched to Anastrozole and Zoladex. The Zshot was horrible for me...neither tamoxifen nor anastrozole seemed to do much. After a few months I opted to have my ovaries and tubes removed and drop the Zshot. Personally, a wonderful decision. Since that surgery my calcium levels have started to climb however, which is not great for my bones. Dropped the calcium and vitamin D supplements, got referred to an endocrinologist, more tests and scans, and best guess is that the Anastrozole has a less than 2% chance of causing hypocalciumia and I won that jackpot. I completely dropped dairy from my diet and the calcium number dropped to normal. I introduced a bit back in and switched to Exemestane (that did not have hypcalcimia as a possible SE) and the numbers climbed a bit but are still within good margins. It's only been a couple of months now but hope I'm done with all the switching.... That's my story at least.... I also know of a post-menopausal woman that is on Tamoxifen so...? who knows what the magic combo is for any of this! We all have our own magic combo.
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Hi all! Just found this thread. I was diagnosed in August and start my chemo this week. I am Triple negative so no hormone therapy. I too was told I was young and since I was young to do genetic testing. Came back normal but found out a lot of colon cancer and precancerous polyps in my family so now watching that too!
Right now I feel like an old worn down person, having trouble keeping any energy up! I took a nap this afternoon and am already ready for bed again...
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Hi Mncteach,
Welcome to the thread. This is a wonderful supportive community, and I hope that you will receive all the support you need here. I also hope that chemo will be easy on you. Everyone reacts differently to chemo. I also had dose dense AC plus T. All in all, for me, chemo was much easier than anticipated especially since there are so many ways to deal with side effects. I hope the same for you.
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Hi ladies!
I am getting ready to start the hormone therapy part of my treatment and have a question for anyone on Zoladex and an AI (Arimidex for me). I received a second opinion on my treatment plan and the 2nd MO provided basically the same recommendation but they differ on when to start the AI. Did you start the AI at the time of your first injection or did you wait one cycle of Zoladex and start the AI after the second injection? Thank you!
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I did one month of Zoladex, and then started AI after the 2nd shot. I was told this would give me a chance to see how I am doing with side effects from the Zoladex alone. I am about 4 months in and tolerating it well.
Did your period return after chemo? I went into chemopause so I'm not entirely sure how much the Zoladex is doing, or if the chemo already put me in full menopause. No estradiol testing done before or on going unless I ask my GP.
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I started AI after my third (monthly) injection of Lupron. Original plan was to start it a few weeks after the first injection but I was a bit of a hot mess (period came back from chemopause after first shot, then a bunch of unpleasant side effects). MO said they often wait until people are done with rads to start.
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I'm finding the last few posts interesting. At my first MO appointment I wanted to chat Tamoxifen and get those details worked out, but my MO spent more time talking about chemo. When he did talk about Tamoxifen he also talked about taking out my ovaries, which I really didn't want since there are some indications that doing that increases your risk of heart disease (which is on both sides of my family). I'm 48 and probably knocking on the door of menopause, the idea of the AI and the shot might be an option. Needless to say I'm switching to an MO who specialized in BC, I will be interested in her suggestions. I'm finishing up rads first, so probably won't be starting anything until March. More side effects...great...not!
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I am new on this forum and i am glad i found you, ladies!
Like most of you probably, i was in denial for quite a while, but eventually i got to accept that cancer is not one of those things that only happens to other people. I couldn't accept it because i never felt anything suspicious, never had a lump or any kind of sign. Just a routine mammogram.
I will have the DMX +TE on Friday.
I did not get to see the MO yet but from what i discussed with the surgeon she believes I will not be getting radiation or chemo therapy. Is this common when treating an early stage, smaller tumor? She thinks i will only do hormone therapy.I am trying to learn from you what to expect and how everything is expected to progress, so thank you for sharing your experiences!
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Applejuice- so sorry you are here. I have had suspicious spots on all my mammograms since I started at age 40, so I was quite surprised when it came back cancer this last one! Never felt anything either. I think chemo is usually recommended for young women like us. (I am 44). My Surgeon was hoping I would have what she referred to JV chemo since it was small, but it turned out I was triple negative so I am on the varsity team. Lucky me! I start today and am quite nervous but have found a wealth of information on this site as well as great support
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Hi ladies - definitely true that we all have our own magic combo. For me personally, I did the lumpectomy followed by radiation, no chemo due to my low oncotype score showing tamoxifen would be just as effective as chemo. I waited ~ a month after finishing rads before starting tamoxifen, and just started taking it mid-Jan. No side effects so far, hoping the ride stays smooth! But that also might be because I'm easing into it, a deliberate plan to try and minimize the side effects.
Mymomsgirl - I'm similar to you in that I do not want to remove my ovaries if I don't have to. I'm trying to find a path to tolerate all of this treatment while maintaining my sense of self and quality of life as much as possible and minimize SEs. I've just started tamoxifen and am fine on it so far... I also fared pretty well through rads. Exercising and movement seems to help for tolerating tamoxifen. Don't know if this smooth ride will hold up but so far so good.
For those doing hormone therapy, there's a thread here on a bunch of us who are starting hormone therapy around the same time (now). Based on someone else's experience who did not have a lot of SEs, we have all been starting gradually - usually a month after radiation, and then starting at half dose for several weeks and working our way up to full dose. Our respective oncologists were all on board with the plan interestingly enough! Although we all had to be the pro-active ones proposing it and asking our oncs about it. Anyways, the thread is here - this is the page where most of us talk about our start: https://community.breastcancer.org/forum/78/topics...
Garnersuz77 - a lot of women on that thread are doing an AI and may be able to answer your question too.
Mncteach and others going through chemo - somewhere in the chemo forums is a thread called "Tiffany's Terrific Tips to Overcome Chemo" or something like that, posted by a gal who went through chemo really well, young, minimal SEs, even kept her hair! When I didn't know if I needed chemo or not, that was a great resource.
applejuice - you are one of the "lucky" ones in that it's so early stage for you. I have a friend who was also similar stage to you and she did the lumpectomy and radiation and that was it, and she's doing great a few years post-diagnosis.
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