Has anyone out there stage 1 and opted out of taking hormone therapy
Lorrie
Comments
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I sorry I cannot answer
I sorry I cannot answer question because I had to do all three chemo, rad and hormone therapy.
I am still take hormone therapy and it kept me ned for almost 2years. I still do hormone treatment to help keep my bone met under control. I feel you have to make that decision on what you feel is right for you.
Good luck on your decision.
Barb0 -
Lorriebjmom1 said:I sorry I cannot answer
I sorry I cannot answer question because I had to do all three chemo, rad and hormone therapy.
I am still take hormone therapy and it kept me ned for almost 2years. I still do hormone treatment to help keep my bone met under control. I feel you have to make that decision on what you feel is right for you.
Good luck on your decision.
Barb
I'm stage I, had a lumpectomy and radiation, but no chemo. I'm now on Arimidex and, knock wood, I haven't experienced any side effects. I was worried that means it's not working, but the oncologist assures me that's not true. From reading some of your posts, I can see you're concerned about the hormone therapy, and I'm no authority, all I can say is I was post menopausal and like you, very very scared to pop that pill -- but it's been fine.
Good luck with your decision.
Victoria0 -
Thanks for your responsesaisling8 said:Lorrie
I'm stage I, had a lumpectomy and radiation, but no chemo. I'm now on Arimidex and, knock wood, I haven't experienced any side effects. I was worried that means it's not working, but the oncologist assures me that's not true. From reading some of your posts, I can see you're concerned about the hormone therapy, and I'm no authority, all I can say is I was post menopausal and like you, very very scared to pop that pill -- but it's been fine.
Good luck with your decision.
Victoria
I see the majority of women here do continue with the hormone therapy and some have experienced success and some recurrences anyway so I was wondering if there were any in stage one and no pos nodes that did not do the hormone therapy and what their outcomes have been so that I have some discussion on both sides to help make a decision. I feel I have already made up my mind but it is always nice to get some reassurance from someone else or a few others who have been there and done that. Thanks and God bless.
Lorrie0 -
4 sisters
My younger sister had stage I and ER+ IDC (no nodes). She did chemo and 5 years of tamoxifen. It was then recommended that she take femara. She chose not to and she did have a local recurrence a year or 2 later. She then had radiation and has been on femara for 5 years now, so far, so good.
My older sister, a physician, had told her the femara was overkill. That same sis is now taking aromasin preventively (only sis without breast cancer thus far).
I had rads, chemo, bilateral mastectomy and 5 years tamoxifen (large tumor, 4 nodes, ER+) and had a recurrence in my ribs after 22 yrs in 2009. I am on zometa and arimidex and doing well.
My oldest sister (there are 4 of us) had DCIS, ER + and just had bilateral mastectomies and no other treatment. I believe she has been clean now for ~18 yrs.0 -
WowCypressCynthia said:4 sisters
My younger sister had stage I and ER+ IDC (no nodes). She did chemo and 5 years of tamoxifen. It was then recommended that she take femara. She chose not to and she did have a local recurrence a year or 2 later. She then had radiation and has been on femara for 5 years now, so far, so good.
My older sister, a physician, had told her the femara was overkill. That same sis is now taking aromasin preventively (only sis without breast cancer thus far).
I had rads, chemo, bilateral mastectomy and 5 years tamoxifen (large tumor, 4 nodes, ER+) and had a recurrence in my ribs after 22 yrs in 2009. I am on zometa and arimidex and doing well.
My oldest sister (there are 4 of us) had DCIS, ER + and just had bilateral mastectomies and no other treatment. I believe she has been clean now for ~18 yrs.
So it sure does run in your family. I am so sorry. Thank you for sharing though about taking and not taking these hormone therapies. It still makes me wonder what happens after you stop taking the tamoxifen or femara? Also did they make sure your sisters were post-menopausal before taking the femara or arimidex? How do you really know? It just seems that the chances of recurrence are still high even if you take these drugs. Did you all have any side effects from the medications?
Lorrie0 -
Lorrie .. I don't think at this point in treatment it would beBalentine said:Wow
So it sure does run in your family. I am so sorry. Thank you for sharing though about taking and not taking these hormone therapies. It still makes me wonder what happens after you stop taking the tamoxifen or femara? Also did they make sure your sisters were post-menopausal before taking the femara or arimidex? How do you really know? It just seems that the chances of recurrence are still high even if you take these drugs. Did you all have any side effects from the medications?
Lorrie
wise to opt out of anything. Maybe you can get alternate med's from your Onc.
Good luck and I'm praying for you!
Vicki Sam0 -
LorrieBalentine said:Wow
So it sure does run in your family. I am so sorry. Thank you for sharing though about taking and not taking these hormone therapies. It still makes me wonder what happens after you stop taking the tamoxifen or femara? Also did they make sure your sisters were post-menopausal before taking the femara or arimidex? How do you really know? It just seems that the chances of recurrence are still high even if you take these drugs. Did you all have any side effects from the medications?
Lorrie
Lorrie I too have questioned what's in my best interest. I'm the oldest of 4 girls and the 5th in my family with bc. My grandmother died of breast cancer at age 62. My aunt dx at age 68 had mastectomy and tamoxifen for 5 years. She is now 90 and doing well. One sister had DCIS lumpectomy and rads, then took tamoxifen for 5 years. Another sister had lumpectomy, 7 lymph nodes positive and had chemo, rads and 5 years on Arimidex. I dx May 2010 with ILC (6.1cm) right breast and LCIS in left breast. I had bilateral mastectomy June 22. At my post op visit with surgeon he went over my pathology report and told me he no longer thought I needed chemo or rads. I have an appt with oncologist in 10 days to discuss what oral pill I take. Since I'm post menopause and already have osteoarthritis and suffer from hot flashes I'm going to express my concerns about side effects. Although each of us has our very own case of bc one never knows what side effects we might incur until......
Char0 -
Hi Lorrie,
I opted not to
Hi Lorrie,
I opted not to take the aromatise inhibitors... I tried all of them and had the same issues over and over...mostly because I have rheumatoid arthritis which was much worse on the drugs (I was constantly in flare)... I have spoken to all of my docs who agree that is my choice, I was dxed stage 1 IDC .3mm lump. I had a double mastectomy back in Dec and am currently undergoing reconstruction...
I can only hope and pray that I made the right choice... quality of life is very important to me.
Dot0 -
alot to think aboutDot53 said:Hi Lorrie,
I opted not to
Hi Lorrie,
I opted not to take the aromatise inhibitors... I tried all of them and had the same issues over and over...mostly because I have rheumatoid arthritis which was much worse on the drugs (I was constantly in flare)... I have spoken to all of my docs who agree that is my choice, I was dxed stage 1 IDC .3mm lump. I had a double mastectomy back in Dec and am currently undergoing reconstruction...
I can only hope and pray that I made the right choice... quality of life is very important to me.
Dot
It seems many of you have quite a family history of bc which I do not. I am the only one and again, very early stage. I am open to talking to the gyn doctor about taking my ovaries out and maybe trying the arimidex or femara and see how I do on it I suppose, but I just am not going to make a final decision until I talk to gyn next week. I am praying that diet and exercise will help me more than any of these other options. My last chemo was 5/17 so I know I cannot wait too long to make a decision on this.
Lorrie0 -
I had a very early case ofBalentine said:alot to think about
It seems many of you have quite a family history of bc which I do not. I am the only one and again, very early stage. I am open to talking to the gyn doctor about taking my ovaries out and maybe trying the arimidex or femara and see how I do on it I suppose, but I just am not going to make a final decision until I talk to gyn next week. I am praying that diet and exercise will help me more than any of these other options. My last chemo was 5/17 so I know I cannot wait too long to make a decision on this.
Lorrie
I had a very early case of invasive lobular carcinoma, ER+, PR+, no positive nodes, in 2000. It wasn't given a stage, but I would assume 1. I had a lumpectomy and radiation and started taking Tamoxifen. I didn't really have any side effects until 6 months later when I developed blood clots. At that time, I stopped taking Tamoxifen, and my oncologist hasn't prescribed any other hormone treatments. I did have a recurrence in 2001, but that was caught very early (DCIS), and I had a bilateral mastectomy.
You should talk to your gyn before you start taking any hormone treatment.
Joyce0 -
Thanks Joycejk1952 said:I had a very early case of
I had a very early case of invasive lobular carcinoma, ER+, PR+, no positive nodes, in 2000. It wasn't given a stage, but I would assume 1. I had a lumpectomy and radiation and started taking Tamoxifen. I didn't really have any side effects until 6 months later when I developed blood clots. At that time, I stopped taking Tamoxifen, and my oncologist hasn't prescribed any other hormone treatments. I did have a recurrence in 2001, but that was caught very early (DCIS), and I had a bilateral mastectomy.
You should talk to your gyn before you start taking any hormone treatment.
Joyce
So your doctor never prescribed any other post menopausal hormone therapy or having your ovaries out?
Lorrie0 -
no other treatment after dxBalentine said:Thanks Joyce
So your doctor never prescribed any other post menopausal hormone therapy or having your ovaries out?
Lorrie
I had bilat mast in Jan 2008 for IDC, stage 1, no node involvement. I could not have rads because I had radiation 21 yrs ago for Hodgkins Disease. This radiation treatment most likely caused my BC. Chemo offered very little benefit plus my heart has been damaged from the previous rads and chemo. I started Tamoxifen for 2 months but started having gyno issues. A year later I had a TIA, so I never revisited taking anything. I have received three opinions, my local onco, one at Fox Chase and one at Memorial Sloan Kettering who all agree, Tamoxifen is not necessary for me. Feels strange that I "only" had surgery to treat the breast cancer. Also, I had one ovary removed because of a cyst and a high ovarian cancer marker (CA-125) that was benign. Docs have said it is not the standard of care to remove the other ovary. Some studies suggest the ovaries protect our heart health too.
Best of luck sorting this all out for your decision!0 -
well it goes to prove it iscathyp said:no other treatment after dx
I had bilat mast in Jan 2008 for IDC, stage 1, no node involvement. I could not have rads because I had radiation 21 yrs ago for Hodgkins Disease. This radiation treatment most likely caused my BC. Chemo offered very little benefit plus my heart has been damaged from the previous rads and chemo. I started Tamoxifen for 2 months but started having gyno issues. A year later I had a TIA, so I never revisited taking anything. I have received three opinions, my local onco, one at Fox Chase and one at Memorial Sloan Kettering who all agree, Tamoxifen is not necessary for me. Feels strange that I "only" had surgery to treat the breast cancer. Also, I had one ovary removed because of a cyst and a high ovarian cancer marker (CA-125) that was benign. Docs have said it is not the standard of care to remove the other ovary. Some studies suggest the ovaries protect our heart health too.
Best of luck sorting this all out for your decision!
well it goes to prove it is all individual and not a "one size fits all" hope you decide what you want to do and what is best. I know you are praying about it and will make an informed decision.0 -
I have felt thatcathyp said:no other treatment after dx
I had bilat mast in Jan 2008 for IDC, stage 1, no node involvement. I could not have rads because I had radiation 21 yrs ago for Hodgkins Disease. This radiation treatment most likely caused my BC. Chemo offered very little benefit plus my heart has been damaged from the previous rads and chemo. I started Tamoxifen for 2 months but started having gyno issues. A year later I had a TIA, so I never revisited taking anything. I have received three opinions, my local onco, one at Fox Chase and one at Memorial Sloan Kettering who all agree, Tamoxifen is not necessary for me. Feels strange that I "only" had surgery to treat the breast cancer. Also, I had one ovary removed because of a cyst and a high ovarian cancer marker (CA-125) that was benign. Docs have said it is not the standard of care to remove the other ovary. Some studies suggest the ovaries protect our heart health too.
Best of luck sorting this all out for your decision!
ovary has additional functions to estrogen production. Thanks for pointing this out.0 -
I also read the same thing recentlyNew Flower said:I have felt that
ovary has additional functions to estrogen production. Thanks for pointing this out.
As I was researching the other day, I also read about the ovaries and heart health. I do have HBP and had a murmur in my heart as a baby so I definitely don't want to have any heart issues. Years ago I had problems with heart palpatations for several years...it got to the point where I felt lightheaded and was going to pass out. I had EKG's done and a halter monitor twice but they never found anything..then one day the palpatations just stopped coming after I started going to a Chiropractor....he did an adjustment on my chest a few times and said one of my ribs was out of place....after that I never had a problem with it. Strange. Thanks for all the advise. It is good to hear many different scenarios and situations to be able to make an informed decision.
Lorrie0 -
Sorry - Ladies .. just going to Vent hereBalentine said:I also read the same thing recently
As I was researching the other day, I also read about the ovaries and heart health. I do have HBP and had a murmur in my heart as a baby so I definitely don't want to have any heart issues. Years ago I had problems with heart palpatations for several years...it got to the point where I felt lightheaded and was going to pass out. I had EKG's done and a halter monitor twice but they never found anything..then one day the palpatations just stopped coming after I started going to a Chiropractor....he did an adjustment on my chest a few times and said one of my ribs was out of place....after that I never had a problem with it. Strange. Thanks for all the advise. It is good to hear many different scenarios and situations to be able to make an informed decision.
Lorrie
I am sick to my stomach with the idea of breast cancer - or cancer in general. Chemo or radiation - surgeries. Okay .. so we heal, then we have to continue with some sort of medication for 1 year, perhaps 5 years. Let's not mention that side efforts associated with our before and after hormone drugs .. WHAT THE HELL0!
Heart palpations, diziness, fatigue, brittle bone disease - so what the medical field is stating .. is that if Breast Cancer - or Chemo doesn't kill me, or render us half the woman I was before ------ .. then a side effort from 1 of our precribed drugs .. may ??
God Help us ALL ..
Just when I 'THOUGHT' it was safe to go into the waters.
Vicki Sam0 -
I agreeVickiSam said:Sorry - Ladies .. just going to Vent here
I am sick to my stomach with the idea of breast cancer - or cancer in general. Chemo or radiation - surgeries. Okay .. so we heal, then we have to continue with some sort of medication for 1 year, perhaps 5 years. Let's not mention that side efforts associated with our before and after hormone drugs .. WHAT THE HELL0!
Heart palpations, diziness, fatigue, brittle bone disease - so what the medical field is stating .. is that if Breast Cancer - or Chemo doesn't kill me, or render us half the woman I was before ------ .. then a side effort from 1 of our precribed drugs .. may ??
God Help us ALL ..
Just when I 'THOUGHT' it was safe to go into the waters.
Vicki Sam
I agree Vicki Sam! I see my oncologist next week and I have a lot of questions about side effects from any post bc hormone therapy. I have HBP and osteoarthritis and don't need anymore problems just because I have to take a pill.......
Char0 -
Making an informed decisioncahjah75 said:I agree
I agree Vicki Sam! I see my oncologist next week and I have a lot of questions about side effects from any post bc hormone therapy. I have HBP and osteoarthritis and don't need anymore problems just because I have to take a pill.......
Char
My purpose in posting this post was to make sure all of us are making an informed decision. What is right for one may not be right for another. The conclusions I have come to for MYSELF after going through mastectomy and chemo and being on this network for several months reading all of our concerns and then also doing my own research is that I will not rely solely on my Onclogist's opinion and maybe not even a 2nd Oncologist's opinion especially when the two disagree on my treatment plan....I will be proactive in my own care by asking alot of questions and also doing my own research. If I would have listened to my 1st onc I would have been taking a medication that was virtually ineffective for me and also putting me at risk for other side effects. Also, it is a choice for each of us as to what stage we are in and other health issues as to whether quality of life is more important. If I were stage 3 or 4, I would probably do whatever they told me because my cancer would be more aggressive and later stage but because I am stage 1 and no family history of cancer, I feel I have options. This is just my opinion and my choice. I hope everyone else that reads this simply will realize they may have a choice in their care and to ask questions, get 2nd and 3rd opinions, pray and then go with what your heart tells you. Many that are in a later stage may not have any other options, but I believe some of us that are early stage might.0 -
Lorrie, no my doctor hasn'tBalentine said:Thanks Joyce
So your doctor never prescribed any other post menopausal hormone therapy or having your ovaries out?
Lorrie
Lorrie, no my doctor hasn't prescribed anything else: most of the other meds have a possibility of blood clots also. And no to the removal of the ovaries. BTW, my recurrence was in 2009, not 2001, so it was nine years before I had another problem which was caught very early.
Joyce0 -
Blood clotsjk1952 said:Lorrie, no my doctor hasn't
Lorrie, no my doctor hasn't prescribed anything else: most of the other meds have a possibility of blood clots also. And no to the removal of the ovaries. BTW, my recurrence was in 2009, not 2001, so it was nine years before I had another problem which was caught very early.
Joyce
Hi Joyce....
I am in week one in taking tamoxifen. As with everyone.. I am frustrated with one cure... may be a cause to a new ailment.
How did you notice the blood clots (to know to stop)? This is what I am worried about... along with endrometrial or uterine cancer and ...
Thanks0
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