moving too quickly!

I didn't have any side effects of tamoxifen for almost 2 months. Then I had my first warm/hot flash. But I'm perimenopausal, so I don't know if that would have happened anyway. I have other reasons to not be at the temperature others are experiencing. This winter, I've usually been a lot colder than everyone else. I just explain to everyone that I live in a different universe.



The only other effect I've had from tamoxifen is irregular menstrual bleeding, but I had that for decades before starting tamoxifen. So far the gyn has been alternating pelvic ultrasounds with endometrial biopsies every 6 months if my pattern continues.



I've been on tamoxifen continuously since 7-06.



We all are different. Some people have ZERO side effects. Others it affects their quality of life. And still others are somewhere inbetween.

mtbmom -

   I was diagnosed with LCIS in October and at that time, my sister-in-law who is a physician, talked to me about her experiences with women taking tamoxifen.  She indicated that the cloudy brain was fairly common and that many women choose to also take lexapro (?) or some other antidepressant medication.  the SRIs (seratonin reuptake inhibitors) have at times been used to treat conditions like ADHD to help people get focused and organized, and the brain fog you can get with depression (and maybe tamoxifen) makes you feel like you can't function.  I am already wrestling with perimenopause and work-related stress that leaves me feeling like an early altzheimers patient and decided that I really couldn't afford to take tamoxifen.  I still have three kids to get through college (one who is still in high school) and I need to be able to function as efficiently as possible.  That is the quality of life issue.  I am also an extreme optimist, with no family history of BC except in a great aunt (though my mother and grandmother both died young from othe causes).  I have five sisters and no one else has had any breast issues.  Two of my sisters have had cervical biopsies and that freezing treatment  (can't think of the technical name) but no cancer.  Anyway, all of this led to my decision to put off, for now at least, any drug treatment.  I appreciate the fact that each of us is an experiment in this unknown area.  by the way, my sister-in-law at first told me to "lop em both off" - her mother had DCIS and a masectomy- and suggested that I tell my kids that I had "an early cancer".  I went with what she later referred to as the "spin" that it is NOT cancer. and just requires monitoring.  I realize that is a very minimalist response, but it seems to fit my families circumstances at this time.  Good luck with the tamoxifen, I appreciate the opportunity to share in your experience and learn about it with each and everyone of you - 

Laurie 

I don't know much about Tamoxifen but I was on Evista for three and half months and I am done...I can't take it anymore...the nausea, leg spasms, just feeling sick all the time and hot flashes.  I did what my doctor wanted me to do and now I am done with it....to much to worry about as it is without feeling sick all the time.

I am feeling much better after two weeks of not taking it. 

 This is my personal dicision and was a hard one to make but had to do something....I wanted my quilaty of life back. 

I wish you all the best with what ever you take or decide to do...it is not a easy task and a lot to think about.

liveit

Denise, I'm about your size, so I can relate. I just thought of something you could ask your doctor about. I didn't do this myself, but I think some women split their dose, taking 10 mg in the morning and 10 in the evening. Tamoxifen used to come in both 10 and 20 mg pills; I am assuming that it still does but don't know for sure.

Another thing you might try, with your doc's OK, is changing the time of day you take your pill. For example, if you're taking it in the morning now, maybe you could try taking it at night instead and see if you do better. But please ask your doctor about this before you do it!

Hang in there!

I am a new gal on these forums. I have already posted, I did the "just diagnosed with LCIS and puzzled". Anyway I read all these comments on the moving too quickly and i really liked hearing about everyones else's challenges too. I feel like I am not alone as much!!!



Ok as I said in the other forum I am 47 years old and had breast reduction surgery at the end of Jan. I am doing pretty well now and i am thrilled with my new "girls", I went from a DD to a C. I did have a problem 12 hrs after with a hematoma developing and they had to go in a 2nd time to drain it. Then I lost too much blood and had to have a transfusion!! I became very anemic, I am still sore, swollen and sometimes tired but OMG I am soo much better!!! When I went back to my Plastic surgeon 2 weeks later for a check up they told me about my pathology report from the tissue that had been removed. He said I had LCIS in my left breast and talked to me all about it as I had never heard of it. I also have this hyperplasia thing, he said part of this LCIS. Anyway when the Pathologist found this he tested many other parts of the tissue in that breast and the other one. Thankfully it was no where else. I have now seen 2 Oncologists and a breast surgeon. They would like me to come in more often for checks which I am in complete agreement with and take Tomoxfican.OK I know i will have side effects - I am not trying to sound pessimistic but I have not had good experiences on drugs before. I have a very sensitive stomach, get nausea, gassy stomach etc. I have had a back problem for 20 years from an old injury and when I get the flu the aches go right to my back and are sooo bad!!! i can see this with Tomox too. Now obviously i would rather take the drug than get cancer but I am just not sure what to do. Part of me says to take the 3rd option and have a mastectomy/reconstruction!!! ALthough I would never take this lightly and would think long and hard about it .. I have an appt tomorrow with the Oncologist to talk more atabout the Tomox and the side effects. The other thing is that I am a worrier, I keep in check but it is just my personality. I feel like i would worry about the scary risks!! I do not have bc in my family - my great, great Aunt had it but Dr said that is too far back. I am not really loosing sleep over this but I do think about it quite often trying to come up with the right solution for me. I am a very busy mom of 3 whom are 13 and under. My husband thankfully has been very supportive of whatever choice I decide. My folks whom i am very close to feel like I should just go in every 3 months and get checked. The dr said I should really do more than that. My friends think i am absolutly crazy to even think in my mind about any kind of mastecomy!!!



I am so glad that I stumbled across this web site, it truly sounds like everyone is so supportive and sweet. I wait to hear more about what people say and I want to me there for everyone else too!!!!



Allison

There have been some LIMITED and PRELIMINARY studies on low dose tamoxifen. One of these studies suggests there is a big variation in tamoxifen (and metabolites) levels with different people. Whether this is of significance I don't know. I think there have been some threads in the Hormone Therapy Forum on tamoxifen metabolism in the past.



http://www.ncbi.nlm.nih.gov/pubmed/16382122?ordinalpos=24&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



http://www.ncbi.nlm.nih.gov/pubmed/15073109?


ordinalpos=49&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum



http://www.ncbi.nlm.nih.gov/pubmed/12706357?ordinalpos=66&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Edited to add: We do NOT know if all of the adverse effects of tamoxifen are related to dose. In other words, it is NOT necessarily true that a bigger dose gives more adverse effects. For some drugs and some adverse effects, lowering the dose may NOT reduce the severity or incidence of an adverse reaction. As far as I know we don't have information about this for tamoxifen.

Denise--I see my oncologist every 6 months--he does blood work, a breast exam, we go over test results, we discuss how things are going with the tamoxifen, and he coordinates my mammos and MRIs (and US if necessary). I also see my gyn once a year, so there's another breast exam). I've been fortunate to have relatively mild SEs from the tamox, but it must be working because MRI and mammo are clear! (just had them done on Wed.) The majority do well on tamox, you just hear the problems here because this is where we come for support (as it should be); people doing well tend to not post as often. I'm over 4 and a half years out with LCIS; my mom is a survivor of ILC of over 21 years, she took tamox without any SEs.

Anne 

Do you guys feel the Tomox upsets your stomach a lot.  I so have a sensitive tummy and I can imagine that could be an issue if I do go on it. 

I had an appt with my Oncologist today to discuss the tomox more.  He tried to tell me about the fact that i am 47 years old I am going to have aches and pains as I am not a 20 year old anymore.  He gave me this idea.  Write down my symptoms on and off the tomox.  SO wait 2 weeks before i start tomox.  The first 2 weeks write down every symptom that i get whether it is being tired, wake up with a back ache, gassy tummy, headache just whatever but write it down every day.  Then after 2 weeks go on the tomox and write down the symptoms that i get every day while on it for 14 days.  Then compare the 4 weeks on and off the medicine.  It sounds like he is saying that i won't find that much of a difference but I think that is HOG WASH!!  I mean maybe their won't be that much difference but he can't say that for sure as everyone is different. What do all you think?  MAYBE at somepoint i will at least try it.  I probably couldn't go through a mastectomy unless i had at least tried this drug.  I mentioned to the Dr that it is bothersome that after taking it for 5 years you don't know what happens meaning does it still work, do you take something else??? He definately was in disagreement over having a mastectomy, he says that is way over the top when their is nothing more than LCIS but of course that is up to me.  Of course it is something that shouldn't be takin lightly but every individual is different. He feels that patients that do this over just LCIS without any other risk factors are doing it so they don't have to worry about getting breast cancer.  Then he said yes it will help relieve the stress of not getting BC but that I would still be anxious - just about some other health thing. I guess he has a point, what do you guys think about that?

I really am liking this support site and everyone seems so friendly.  It really helps to keep things in perspective and be positive when you have other people to talk to who have dealt with the same thing.

Thanks Again

Allison

Hi, Allison,

I have several thoughts about the issues you raised in your last two posts. You've really been hit with a lot, and it's so hard to sort through everything.

First of all, I think that your doctor's idea of a diary is a good one. This will give you something objective to go on. It is possible, of course, that your physical symptoms will be the same both on and off tamoxifen. But they might not be. That's what you'll find out if you keep the diary. Unless your doctor actually said that you won't see much of a difference, I wouldn't assume that he thinks that. That's why he's asking you to keep the diary--so you will both know for sure. So I would do that if I were you. Also, I'd write down what you eat and when along with physical symptoms. That will tell you whether certain foods seem to affect you, especially if you are getting headaches.

By the way, when I went on tamoxifen for the second time, I did notice some queasiness. I'm pretty sure this is a known side effect, and it went away after about 2 or 3 weeks. It never was very bad, though.

With LCIS, you have plenty of time to make the decisions that are right for you. Some people do have prophylactic bilaterial mastectomies (PBM), but everyone I know of who has done this spent months or years considering that option. I'm considering it myself, but I was diagnosed six years ago. It is not something I would have done in the first few years, as I was trying other treatments then. PBM is permanent, you know, so you want to be very sure. You've just been hit with all this, and it takes time to process everything.

It sounds like your doctor is not in favor of PBM. Some doctors are not, and for very good medical reasons, but it seems to me that it was inappropriate of your doctor to say that if you had a PBM, you'd only be anxious about something else. That is not the issue. The issue is what to do to treat your LCIS. You may or may not be anxious about other medical issues, but that has nothing at all to do with whether PBM is or is not the correct treatment for your LCIS. Your doctor may have sound medical reasons for recommending against PBM, but if it were me, I'd ask him specifically what those reasons are. If this is something you do eventually want to pursue, you'll need to get another opinion (or maybe even two more.) At some point, you'd be referred to a surgeon, who will also weigh in on the topic.

If you live near an NCI Comprehensive Cancer Center, it might be worth a call to them to see if they have a high-risk breast program. The doctors and staff there will likely be more experienced with LCIS than local doctors, and they should be the most up-to-date on research also. It is sometimes possible to go to a CCC for a consultation and then return to your regular onc for care, if that person is willing to work with the CCC folks to coordinate your care.

Try to take it one day at a time. Keeping the diary is a good start. That will give you some great information, and then you'll be able to go from there.

Good luck!

We all do have different experiences. Each of them is valid.



I went to a NCI CCC and got a consult that I considered 'lousy'. My gyn said a childhood friend of hers who got bc also got a consult from this place that she considered lousy. So centers may differ, or maybe certain experiences are different.



This NCI CCC initially said they use the Gail model to estimate breast cancer risk (after I pointed out to them I had LCIS.) (I pointed out to them (this was the NP, who saw me before the breast surgeon) that the NCI website specifically excludes LCIS.http://www.cancer.gov/bcrisktool/). I was hoping since presumably they see more LCIS patients than my onc, that they would have a better idea of my risk. They gave me no idea how statistically uncertain the Gail model was, even IF it applied to LCIS women.


This NCI CCC told me (I have LCIS and ALH, and a weak family history) that my risk for bc was certainly somewhere between 10 and 60%, and if they were pushed for an answer, my risk for bc withOUT tamoxifen was close to 10%. They said if I wanted a more accurate answer, they would have to go look at journals. (As if I hadn't??? though at that time I did not know a bigger picture of how inaccurate breast cancer models are for making individual clinical decisions.) They also told me they would only recommend yearly mammos and biannual clinical exams because I had 'too much scar tissue' from my one excision to have an MRI, even a single MRI to establish a baseline. They said they offer their LCIS patients tamoxifen (or raloxifene if they are eligible) prescribed by their breast surgeon.



As far as PBMs, this NCI CCC definitely did not recommend it in my case, but 'would not bar the door to surgery.' (With my insurance, even if I got it approved, I would be paying at least 30% out of pocket.) The very first thing my current breast surgeon told be at my initial visit (before I had my excision) was "If you are interested in PBMs, I will fall over in my chair." I was and am not pleased about that comment because at that point, she did not even know my family history so didn't know if I would be at risk for BRCA. After my excision, she told me she was 'not interested' in doing any further surgery on me.




Luckily my onc did NOT feel threatened by getting this consult. (I have yet to get a copy of the consult to my onc, even after about 6 phone calls, none of which was returned. I think I'm going to have to make a trip over there in person.) My onc says sometimes the written consult says different things than what they tell the patient.





I had a VERY GOOD experience with this NCI CCC institution for my genetics counseling, though, so maybe its just their high risk breast cancer section, or the particular people I saw. I would have been more satified if they would have told me how uncertain any of the risk factors are for making clinical decisions for an individual patient.





We all have different experiences. I am so glad that we can share our experiences, and get an idea of the range of care we get.