Do I really Need Tamoxifen??

meandcancer

I just found out that I have breast cancer..I had a lumpectomy..and I am at stage 1 and the tumor was .6 cm.. I was told by the first oncologist that anything under .5 is just radiation. I am .6cm and I just turned 40 and my husband and I just deided just 3 months before (I was was told I have breast cancer) to have a baby. He at the time told me that since we were trying to conceive and that my tumor was small that I just needed radiation. Now, everything changed..now they say I should get chemo, radiation and take Tamoxifen? I am going nuts because everytime I go back there is more shocking news. We decided to skip Chemo..when we said that they told me that was a good choice to skip chemo? Why, did they push it..now, I am thinking about skipping taking Tamoxifen all together so, we can have a baby.  Anyone, decide not to take it? They keep telling me that at age 45 we can try..hu?? Who even knows I can then? My score came back as being Moderate to have the cancer come back...anything under 10% was low and I scored 13%??? Just so confused and a little pissed off...Please help...

rgiuff

Meandcancer, sounds like you had a very tiny tumor.  Of course, an oncologist is going to recommend the protocol, which is tamoxifen.   And preserving fertility is not their first priority.  The fact that one oncologist did say that you don't need it, should be encouragment for your life plans.    Tamoxifen could possibly stop your periods, either temporarily or permanently, and chemo most surely has an even higher chance of making you infertile, so good thing you said no to that.  It sounds like overkill for a tumor that size with no lymph node involvement.  Was your tumor estrogen/progesterone +?

I agree that waiting until 45 is very risky, you have to think about how important that baby is to you, even if it means taking a very small risk of cancer coming back.   You could follow the protocol, but then feel regretful later that you didn't have that baby and let cancer rule your life.

Another option is to take 2 years of tamox, then try for the baby, many oncologists are agreeing to this, but then again, at 42, getting pregnant could be more difficult than at 40.  Just my opinion, but in your shoes, I'd go for the baby and feel hopeful that the odds were on my side.

meandcancer

Thanks for the info!

 My Tumor was small and only noticed it when I had a routine Mammogram They told me don"t worry and that this wouldn"t be cancer. Here I am.

The thing is, I was told so many different things..I just saw the Dr. 2 weeks ago and he told us just to do the radiation and go have a baby. Then just 2 days ago same Dr. said that I needed all 3? My husband says its because they are covering every thing and want you to make that choice so you don't sue them. I think that they should inform you better about the choices and let you decide from there. It all changed beacuse of my score put me in the moderate beacket..but, I keep thinking 13% isnt that high! 

Talking to my best friend who has has a double mastectomy last year..told me to just skip it..and try and take it from there..I think that is what I am going to do...

I just wanted to see if anyone else decided not to take this pill..

idaho

Tamoxifen is sometimes used for a fertility drug... ask your doc about that.... Tami

rgiuff

You could also ask the doctor what your risk is of reoccurrence with and without the tamoxifen.  If there isn't a huge difference, that might help make you feel better about your chances.

Also, when used as a fertility drug, it's used on a short term basis, just enough to stimulate the ovaries into ovulating.

elimar86861

Are you talking about the Oncotype Dx test?  If so, did you have an RS score of 13, or are you saying that the risk of distant metastasis was 13%?  The Oncotype report gives both figures. Do you have a copy of the report for yourself?  I did not realize they gave this test to women with DCIS, so was it another test?

An RS score of 13 is in the Low risk of recurrence group, the group that does not benefit much from chemo, so that would be good news.  However, an RS score of 13 would put you in a group that usually benefits from Tamoxifen.

If the 13% you mention is the chance of distant metastasis, than your RS number would probably have been higher and in the Moderate group.  Some people in that group do choose chemo, in addition to Tamoxifen.

Was your cancer actually Ductal Carcinoma In Situ?  If so, I am surprised they took three of your nodes.  DCIS is not considered to be invasive?  Do you, perhaps, mean IDC?  That is invasive.  Most women with an invasive component to their cancer are advised to have some kind of adjuvant therapy (chemo, hormonal) but some women with DCIS have neither and are just monitored with follow-up screenings. 

You might want to get a copy of the final pathology report if you do not already have it.  It should also tell you the degree (percentage) to which your tumor was ER positive.  That would also be a factor for someone deciding on taking/skipping Tamox.  If it was a high percentage, Tamox may help you a great deal.

Hope you don't have to derail your plans to start a family.  Best of luck to you in reaching a decision.

Beesie

Standard breast cancer treatment guidelines suggest that the "line in the sand" for whether or not chemo is recommended is a 1 cm tumor.  In other words, less than 1cm, no chemo; more than 1 cm, chemo is considered.  However for less aggressive tumors, these days sometimes chemo isn't strongly recommended even for tumors that are up to 2cm in size.

The fact that your oncologist suggested chemo for you, despite the fact that you have only a 0.6cm tumor, suggests one of two things:

• The first possibility is that your oncologist is very conservative.  As RoseG suggested, ask the oncologist about your risk of recurrence.  First, find out your risk if you do nothing more than surgery and radiation (I'm assuming that you are okay to precede with radiation since you didn't indicate otherwise).  Then ask what your risk of recurrence would be if you added chemo but no Tamoxifen.  Then, what would it be if you added both chemo and Tamoxifen.  Lastly, what would it be if you had only Tamoxifen but no chemo.  Your oncologist should be able to give you all of these estimates and that can help you determine if the benefit from either chemo or Tamoxifen is worth it to you. If your recurrence risk is reduced quite a bit by either chemo and/or Tamoxifen, you might decide that you want to take this treatment after all.  But if your recurrence risk is only reduced a small amount, I'm sure you will feel much more comfortable with the decision to pass on both chemo and Tamoxifen.  This recurrence risk data is information that any responsible oncologist should provide to help a patient with these decisions.  If your oncologist isn't willing to give you this info, then go to another oncologist to get another opinion.
• The second possibility is that you have a very aggressive tumor.  If your tumor is HER2+, that would fit the bill.  Women with tumors as small as 0.5cm are given chemo and Herceptin (a drug only given to women who have HER2+ breast cancer) simply because HER2+ cancers are so aggressive.  But from the fact that your oncotype score was 13, it doesn't sound like your cancer is HER2+ (assuming that your score of 13 came from an oncotype test).

To your specific question about whether any women choose not to take Tamoxifen, yes, there are lots of women who make this decision.  I decided not to take Tamoxifen.  But my decision - and anyone else's - isn't relevant to you.  The benefit from Tamoxifen is different for each of us, depending on our pathology and other treatments we take.  So while the benefit of Tamoxifen wasn't enough for me, the benefit for you might be very different.  Similarly, what I consider to be a low benefit might be something that you consider to be significant. This is why you need to get the specific information about your recurrence risk level, and the benefit that you will get from Tamoxifen, from your oncologist. 

One last comment, I notice that your signature line indictates both "DCIS" and "Stage I".  DCIS is always Stage 0 and as elimar mentioned, the Oncotype test is not given to women who have DCIS.  Many times women with breast cancer have both DCIS and IDC (invasive cancer).  In those cases, the staging and diagnosis is based on the IDC, since that is the more serious condition.  The DCIS needs to be removed, but other than that, it's not an important part of the diagnosis and all the treatment decisions are based on the amount, grade and pathology of the IDC. So if you have both DCIS and IDC, your diagnosis would be IDC, Stage I.

I hope this helps!

meandcancer

I am just a little overwhelmed with all of this..I only found out that I had cancer a little over a month ago.

 I did have the tumor removed while doing that they found a non-invasive cancer and removed that also. They told me my tumor was a slow growing. I am sure I am probably confusing everyone since I am myself.

I had an apt. to see the oncologist 2 weeks ago..at that time I thought we were going to discuss my radiation treatments...standard radiation vs. mamosite (which the surgeon recommened). We get there and he says ohh this is good news its so small and that he has no idea why we are seeing him since he does chemo..then requests that we do the oncotype testing..we didnt have to but, it would benefit us for knowing what chances it were to come back. We decided to do it and then he said he wanted blood and a chest x-ray..told us to do radiationa and not to take Tam..and go have babies..Nothing more about my radiation treatment until 2 weeks later.

Then last week we go and see a radiologist and to my surprise again..they are talking about standard radiation..when I asked about the mamosite they then went nuts and switch totally to that since there is a guideline when I could do that it was ending that day..so, there I am getting all this info. fast and I thought that is why I was going to talk about the 2 options and then decide later...I thought it over and decided to just the standard radiation the next day...Then the same day we go back to the Chemo guy to get my results from the test!

Then everything switched again..now chemo, tamo and radiation? I was so confused..He didnt show me the report and said I was in the moderate level and that I needed all three.(he kept pointing to the low side of the moderate chart and I read 13% in big letters).or I could go into a clinical trial and they would decide for me..and sat there wanting me to give them my decicion right there!  My Husband told them to please let us have a few minutes he looked at us like what? They did leave and me and my husband had a good talk. We told this lady when she came back in that we were going to do rad and tam and that is it. She pretty much said that is a good choice because there are so many women out there getting chemo that dont need it and that they dont even know it really helps with the cancer comming back??

Now, a coupe days later I am wondering the same for tam..he knew that we didnt want it and he told us since it was so small and that it was slow growing that I would be checked every 3 months go ahead with having a baby after radiation..If I go back and tell them I dont want to take it are they going to tell me the same things like Chemo..thats a good choice they dont even know if it really helps...so confused..why dont they tell you all the reasons pro and con and then let you decide?? arrrgh!

I guess, I need a little more info on the oncotype test and see what percentage it really is. I know that my tumor was the kind that grow on estrogen..so that is why the recommened it..

I am just getting stressed out..

I go in again on Tuesday and hopefully I will get all the answers I need...

Thanks for all you input..I appreciate it alot!

roseg

meanabdcancer - I think you should find out what your her+ status is.

I also think you should bite the bullet and read through Susan Love's "Breast Book." It's a bit long, but you can just read the relevant chapters. You have some hard choices to make and need more information. 

I love this online forumn, but you'll always get information in bits and peices and sometimes a book provides a more comprehensive view. 

I don't want to be discouraging, but at 40 your chances for a baby are not stellar. You need to have a clear idea of the risks you are taking and I think a better understanding would help. You may even benefit from taking your test results and having an appointment with your Internist or Gyn/OB. That would give you input from someone who is qualified buy not involved in your direct treatment. 

meandcancer

I feel so uneducated with all of this..I defiently will call them tomorrow and get all the answers. This forum is helping alot and I am finding out so much of what I need to start asking. I have to admit it is alot to remember.

I am not to concered about me having a baby at 40..I do have 9 year old twins that I conceived naturally. Its just that they are from a previous relationship. I am so blesssed to have had them. I have always wanted more and thought that would never happen until I met my husband now..he has no other children and is 35. So, we just decided to try and that is the hard part. Alot of Dr.'s think that my children are his. They tell me to wait and try at 45 who is to say I can have children by then and I really dont want to wait that long.

My Mom had a baby at 44 and hopefully I have her genes in that area..I have no-one in my family to ever had breast cancer..I just think that since they know what a baby means to us, they should talk to us about our options..never been brought up. 

I am just so confused...

thanks everyone!

elimar86861

meandcancer, so they did tell you that it was a slow-growing tumor.  Well, in that case you should be able to take a week or two to come to an INFORMED decision, so don't let them rush you.  Ask for a copy of the Oncotype report (it's only a couple pages.)  Here's a link to help you read thru' it:

http://www.oncotypedx.com/HealthcareProfessional/ReadingReports.aspx

Also, what Beesie mentioned about comparing the stats on various treatments...Ask your doc to show you the Adjuvant Online program, with your specifics entered in to the program.  That should break down the benefits of the different treatments in your case.  Then, ask for a printout to take home with you for later reference.  Sometimes, seeing it on paper makes it a lot more clear than just hearing them tell you about it.

dlb823

meandcancer ~  Keep in mind that a second opinion is frequently an excellent idea.  Not all oncologists, especially, think alike about your best treatment options.  And other than a "Standard of Care," which are treatment guidelines for certain situations, there are often gray areas and decisions that will be yours to make.

It also may be helpful to get that second opinion at the type of facility that has all of the specialists under one roof, like an NCI-designated cancer center.  That way they will have more interaction with each other and all be on the same page re. your recommended treatment, so the information you get may not be quite as scattered and contradictory as you may be getting now. 

I also think it's very important to choose doctors who communicate the reasons for their recommendations, and I'm not sure if you have that with your current docs.  It's never easy going through this, but the more information you have, the easier it should be to make well thought out decisions that you know are right for you.       Deanna

P.S.  When you first join BCO, you are limited to 5 posts per 24 hr. period.  If you run into that situation, you can always send a Private Message (PM) to anyone here to continue a conversation.  Just click on their screen i.d. to take you to that page.

somanywomen

My best advice would be get copies of everything and keep them in notebook first to latest....Once you get your imformation and slowly start understanding your own individual diagnosis, you will be able to ask your doctors answers for all of your very legitimate questions...So many of them fail to tell us "the rest of the story"......So write down everything you want to ask and have it with you when you see them.....The best of luck to you....

rgiuff

Meandcancer, a second opinion should be covered by insurance and might give you better perspective.  And when you go in, I would strongly emphasize how important having a baby is to you, because as I mentioned previously, oncologist's don't usually consider that a priority, their main job is giving you the lowest risk of reoccurrence.

meandcancer

I called my oncologist today and got his nurse to get my oncotype results so that I have them. She says that they weren't in the computer..and couldnt get them to me. I told her that I was comming there tomorrow and that I wanted it then...for some miracle they finally appeared in the computer..she was pretty snippy with me. I then called my regular ogbyn to see if he could help me a bit on this whole issue. He is going to call tomorrow. His nurse was pretty confused that the oncologist said one thing and then changed his mind completely later.

I asked the oncologist nurse what my changes were of cancer comming back due to the test and she said 13%..I think that is low..considering that I have 87% chance of it NOT comming back. I am just glad that I am getting as much info as I can before I go back next week. I just feel like they want me to make a decision that I don't really want to make. I am trying to consider all my options and then make a decison from there.

If, I keep getting this treatment I am going to get a second opinion. I am going to a cancer center here in my town and everyone else I talked to say that they just love the place and the care they recieved. When I tell that whats all going on with me that is where they tell me to go...and are so surprised...???

Thanks again for all your advise!

I will keep everyone posted!

Thanks! 

kidsandliz

The oncotype dx score of 13 is your risk of having a distant recurrence (metastasis) **AFTER** taking 5 years of tamoxifen. Read the caption to the information and graph once you get your hands on the report. Your risk would be 26% (double your oncotype dx score) without taking 5 years of tamoxifen - or femara, etc. for post menopausal women. So if you did nothing more after radiation your chance is 1 chance in 4 of it coming back with a distant metastasis. Actually on femara you can subtract about 0.8 from the oncotype dx risk since it is a bit more effective (but not given to pre menopausal women).

 Also on the graph will be a portion that shows your risk of recurrence IF you had chemo AND tamoxifen together. Moderate risk scores are a gray area for chemo and there is actually a clinical trial going on randomizing women in the moderate risk range to chemo or not. The fact that you had a tiny tumor (although the gray area for chemo based on size is bigger than 5mm but smaller than 10 mm) with a moderate risk would indicate that probably some of your other markers were a bit more aggressive (not big time or you would have had a high risk score. My tumor was bigger than yours and my risk is 4% -oncotype score of 2 - due to pretty much everything being the 'best' markers).

Jamie6

Hello dear sisters!
It's been a long time since I've posted here. I used to come here for my much needed support sessions when I first got diagnosed back in January 2009. This site got me through my initial period of shock and fear, as well as served to exchange information and encouragements that were vital in getting me through those lonely months when I felt others (family and friends) could not possibly relate to what I was going through.

I did remember thinking back then, how encouraging it was to see few posts by those who have returned after years to let us know how they were doing.

Well, it's been just over 8 years for me now, and I'm still counting my blessings that I am doing so well.

After much contemplation, I have chosen not to have any follow-up therapies of radiation or chemotherapy. I even passed on the Tamox, after filling the prescription and just staring at those pills sitting on my desk for months instead of taking them. For some reason, my inner voice was screaming at me not to take them. I will never know why, or if that was the right decision, but I'm absolutely willing to live with it.

I won't know what will happen in the future, but I remember back when I was regularly posting here, there were a handful of us who were not keen on doing any post-surgery treatments. We each had our own reasons for not wanting to do the various treatments that were typically being prescribed.

I'm posting, in case those people also may come back to check in here again, or look for each other to find out what became of us 8 years later. It may also prompt other people to ask us questions, so if anyone needs to have a chat, you are welcomed to contact me.

Again, I'm NOT here to discourage anyone from post-surgery treatment!! I'm just sharing what I personally chose to do and my own outcome thus far. We each have unique bodies, life styles, and unique BCs, so naturally I cannot recommend anyone to follow my example.

Seven months after my surgery, I enrolled in a nursing school and became an RN. It was more to gain medical knowledge for myself than anything else, but it did keep my mind off BC for a while due to the busy school years.

Lo and behold, by sheer chance, one of my clinical rotations was at the same hospital where I had my surgery done, and I was assigned to observe the same surgery I had (double mastectomy w/placement of tissue expanders) by the very same surgeon who had operated on me!

As I was wearing my cap, mask and scrub, he did not recognize me, despite me visiting him on regular basis for over 6 months to have my tissue expanders filled after he operated on me. However, his assistant who was also apparently an intern at the time (and sometimes got to fill my tissue expanders under the surgeon's watch), did recognize me and tried to recall where exactly she knew me from. It never occurred to her that I was one of her patients, whom she probably expected to still be in recovery mode to some degree while managing some mental depression due to adjusting to new body image, or whatever! Not a chance; not me! Depression was never on my radar, and if anything, BC kicked me into high gear to get things accomplished faster than my prior lazy pace.

I played dumb and told the assistant that I am often told by others that I look like someone they know. She decided to write me off as someone whom she's met at her hospital orientation session. I shrugged and left it at that. My bad! LOL. I needed that little bit of humor/game that day, in order to have the courage to watch the procedure that I personally underwent in the very recent past, with both of my eyes wide open this time!

Anyway, all is good, and my life is quite normal at this point. I still don't forget that I'm a BC survivor, as there's an obvious daily reminder of that. In fact, it changed for the better in that I don't waste my time like I used to when I was taking life for granted before BC. I set goals and go at them full speed, and it's amazing how much one can accomplish in a short time when we stop meandering around too much.

Keeping busy has helped me a great deal. No time to get too upset or depressed when one is kept busy. However, I don't forget to include quality time into my schedule, and I never forget to gift myself on my birthday and on Christmas. I guess counting on myself to keep me happy has worked for me, as I learned the hard way that counting on others can lead to disappointments.

Also, if it wasn't for BC, I don't think I would have gone back to school to become a nurse when I was already in my early 40's. After I soaked up all the love and support I received from this site, I was able to pretty much feeling well enough to tackle life and not let this sucker kick me down. I've since met so many BS survivors, and there's a good number of them in the nursing profession, too! We will always have that immediate special bonding and understanding for one another, and we are thrilled to see other sisters doing so well because it gives all of us the much-needed hope and relief.

My warm love and prayers to everyone in here! I hope you will all manage to come out strong with the amazing support system this place offers.

Sincerely,
Jamie6

KCMC

Jamie: Thank you so much for coming back, my journey just started diagnosed on 3/13. It is great you care enough to come back and speak to us newbies. It gives me hope!