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Shari
7 Posts
Hi. Hope I am do my intro in the correct spot! Anyway, I recently had a small lump found in regular mammogram. It was malignant; only .6mm, nothing in lymph nodes and 'margins clear' when lump removed. Was Stage 1, Grade 2 and estrogen-receptor-positive. Both radiation and Tamoxifen have been recommended post-lumpectomy. I have opted for the radiation, which starts very soon. I am struggling with the decision around the Tamoxifen, since my risk of recurrence is fairly low. I am not thrilled with the ideas of side effects. Wondering if the drugs are 'worth it'. Hear risks are higher if start drugs and then don't complete the full 5 years. Wondered about other women's decisions in similar circumstances. Thanks. Shari
16 Replies
Elsie13
1535 Posts
Hello, Shari‍ .  Glad you have found cancerconnection. Maybe cancertakesflight‍ , Ineke‍ , Minus2‍ , jeniswee‍ , DefLeppardGirl‍ and jeanie‍ will share their experiences with you. 
Also there are many breast cancer discussions you could look at, and maybe join in: https://cancerconnection.ca/discussions/viewcategory/39
jeniswee
26 Posts
Hi, Shari I, myself haven’t started the Tamoxifen yet but I’m told by my Oncologist that it’s “just as important as Chemo & Radiation” in our treatment plan. I’ll be interested to see what others who have already started or finished their Hormone Therapy have to say...
Lchalmers
87 Posts
Hi Shari‍ 
My diagnosis was very close to yours, I had DCIS Grade 1 Stage 1 no lymph nodes affected.  I was ER/PR Positive and HER2 negative.  I had a lumpectomy and radiation.  I started on Tamoxifen after my radiation.  The most common side effects of hot flashes, joint aches and such I had no problem dealing with but I had bad IBS and my stomach could not handle the meds...I can't handle most meds and vitamins anyways.  I decided to stop taking the meds after 4 months as I got too sick, stomach pains all day everyday and had problems eating anything.  I did have the blessing of my oncologist and he never mentioned that the risks are higher if  I start drugs and then don't complete the full 5 years.  Everyone is different and handles medications differently, there are many women that have no side effects at all.  You need to follow your oncologist recommendations and go from there.  After my genetic testing last month i feel that I made the right decision for me, but that might no be the right decision for the next person.  Go with your gut and listen to your oncologist.....Good luck with your radiation treatments.
Shari
7 Posts
Thanks for your responses, Elsie 13, jeniswee and LChalmers,
I am still learning to navigate this website (and I'm not always the greatest computer person anyway). I will assume you will all see this response?? I need to correct one thing I said. My lump/tumour was .6 cm not .6 mm. I guess that would be very miniscule! .6 cm is still considered very small. Having read a bit on the website, including your response LChalmers, I must say I am almost leaning toward NOT taking the Tamoxifen etc.I have also heard of others who went off of the medication at various timeframes during treatment. will talk with my radiation oncologist when I see him next week and likely call the medical oncologist again. I know most people say to 'do what your oncologists say', but I think the protocol/suggestion is the same for most, regardless of size and risk. I am still trying to weigh out my sense of the risks of recurrence versus the problems I fear the drugs will cause.. I have never been one to take drugs, as I said and I don't like the idea of having other things to deal with (which the side effects could bring). Like you jeniswee I am hoping to hear more responses about those who have taken the drugs (and also if there are any on this forum who opted not to take them). My medical oncologist gave me all of the reasons to start on the Tamoxifen,and sent me home with the prescription. But when I talked about my reluctance, he did admit that he wouldn't be overly-concerned if I made the choice not to take the drugs. Tough decision. I feel a bit whiney, because my situation is so much 'less concerning' than many. But I still struggle with what is best for me. I also went and talked to my family doctor. It was interesting that he told me I was the 1st patient who had ever come to talk with him about these choice (most people just automatically do what the oncologists say). Anyway, my 1st radiation treatment is tomorrow. So one thing at a time! Shari
LPPK
1411 Posts
Hello Shari‍  I was diagnosed with IDC ER & PR + HER2-  very small 6mm with no lymph node involvement. My Oncotype DX testing indicated that with tamoxifen my recurrence rate is 9%
I have been on Tamoxifen since Dec. 2017 and had radiation in Dec2017 and Jan 2018.  I have occasional hot flashes (the first 8 months I had a lot),   also occasional leg cramps. The side effect that concerns me is the increase in my uterine lining, Due to that I have had several untrasounds, a biopsy and hysteroscopy.  
There is a thread on this site that you might like to check out Breast cancer is gone, now living with side effects
Shari
7 Posts
Thanks LPPK. I did start looking at that thread
Ineke
87 Posts
Hello Shari!
I was 53 years old when I was diagnosed on January 27, 2016 with DCIS, ER/PR positive, HER2 negative.  I found the lump in my left breast myself.  Had bilateral mastectomy in February 2016 (high risk in family), did not need chemo or radiation as it was Stage 1, Grade 1.  I can't remember what size the tumor was but with the pathology on the breast tissues, they found a second tumor deeper within the breast which I didn't feel.  I started Tamoxefin at the beginning of April 2016.  I was perimenopausal when diagnosed.  The hot flashes were not a surprise but a bit more intense to what I had experienced before starting the meds.  I started having severe bleeding in the fall of 2017 and they discovered a fibroid the size of a 14 week fetus.  I was advised to have a complete hysterectomy which I did.  The funny thing is, the hot flashes actually stopped for a bit after the hysterectomy but then came back but, again, still manageable.  I was also advised to continue with the Tamoxefin.  My latest blood work done this November shows my hormone levels to be pretty much undetectable, now.  I am okay with that as that means that the risks are very low now.  I have another check up coming up in April and the discussion will be whether to stop Tamoxefin since I am post menopausal, now, and start with letrozole or nothing at all.  Are you post menopausal?  I know this is a lot of information and a lot to take in.  We are all here to support you and answer, to the best of our ability, any questions you may have.  Take care!
Shari‍ 

Welcome to the site. I found it well after my cancer treatments were done. While I was going through treatments, I found that the internet was a scary place to go, so I basically stopped using it. Little did I know about this site and how it could have helped me. 

Thanks for the tag Elsie13‍, I do have lots of experience with Tamoxifen. 

I started taking Tamoxifen about 7 years ago (when I was 50), and I just recently stopped taking it. When I was diagnosed with breast cancer, I was stage 2b and grade 2. Initially the thought was that I had DCIS but within the DCIS, there were also tumours. I had a mastectomy of my left breast. I followed that with both chemo and radiation. I refer to this as the party-pack of treatments. After I completed taking radiation, I started my tamoxifen. Initially I started feeling some hot flashes but when my uterine lining got too thick and a polyp was found, my OBGYN decided that it would be good to have a D&C (basically a scraping to remove the uterine lining). Once I had this done, all my symptoms of menopause disappeared. I never had one hot flash again. My blood work did not indicate that my hormone levels were changing so that, 7 years later, my hormone levels were about the same as when I started. No one has an explanation of how that was possible.  While on Tamoxifen, I have quite the collection of side effects and treatments. Some would probably say I was crazy to continue taking it, but I wanted to be able to say that I had done everything I could to reduce my chances of my cancer returning, even if it came with side effects. 

I had multiple blood clots. I had leg cramps like LPPK‍ mentioned but those cramps didn't go away; they just got more and more painful until I could barely walk. I would get treatment and they would come back again. Sometimes the pain would start in my arms and the pain got bad enough that I couldn't even lift my arm. Because I was stubborn or stupid, I continued my treatments. No one asked me if there was a family history of blood clots. My father had a stroke when he was 57 and my mother is on medication for clots, so I certainly have a family history. 

I have had regular tests to monitor my uterine lining and check my blood work (hormone levels). In the course of taking Tamoxifen, I have had two D&Cs and several polyps removed (no cancer found). Since my hormone levels never changed, I had my ovaries and tubes removed this past year. I stopped taking my Tamoxifen before the surgery (because of the clotting factor) and I haven't taken it since then. I am now the same age that my father was when he took his stroke and I didn't want to take any more chances. Now that it was confirmed that I was in menopause, I saw my oncologist again to see about medication for post-menopausal women. The recommended medication also included blood clots as a potential side effect, so I just decided not to continue. I knew that there were other medications that I could try, but I just decided that 7 years was long enough. My oncologist said that she could completely understand why I wanted to stop. She didn't believe that taking a medication for another three years would decrease the risk of my cancer returning and more than I had already done by taking Tamoxifen for 7 years. 

As for increasing your odds of having a recurrence if you start taking Tamoxifen and then stopping, I've never heard that before either from my oncologists or from anyone else on any other forum. That doesn't mean it's not true, but I would talk to your oncologist about it and do some research on reputable websites. 

So, even though I had lots of side effects, I think I would take Tamoxifen again if given the choice. I probably consider it a security blanket. After taking it for 7 years every night, I still look to take it when I go to bed each night. 

When you decide whether or not to take Tamoxifen, keep in mind that we are not all the same. We all have different reactions to medication just like each of our cancers were unique. While there are some things that are common, there are elements that are not the same. As @lchalmers said, sometimes you just have to go with your gut. You have to decide which decision you can accept as the best for you. Once you make your decision, you don't want to live with regrets. 

cancertakesflight (Debbie)
Minus2
910 Posts
Hi Shari‍, 
I was diagnosed at age 54 in May 2016.  DCIS in both breasts with a 2.0cm IDC tumour in the right:  ER+, PR+, HER2-, no lymph node involvement, Stage 1A.  I had bilateral mastectomies followed by immediate implant reconstruction.  Radiation was not recommended.  My OncoDX test showed zero benefit from chemotherapy - my risk of recurrence is 6% if I take Tamoxifen for 5 years.  Have you had an OncoDX test done to determine your specific risk of recurrence?
I started on the Tamoxifen in August 2016.  Side effects have been both minimal and manageable.  I did have a very thick endometrial lining which led to a full hysterectomy and bilateral oophorectomy, which I was advocating for anyway.  The thick endometrial lining was probably sourced in treatment for endometriosis as well as the Tamoxifen.  It is my understanding that breast cancer cannot exist without estrogen, so for me, it makes complete sense to find ways to reduce estrogen or block it from entering the cancer cells.
Starting on any medication to manage cancer is very scary and there are a number of women who have been conflicted about risks vs. benefits and I was one of them.  Ultimately, however, I know myself well enough to know that I would not forgive myself if I didn't do everything in my power to manage the cancer and be healthy, so I opted to take the Tamoxifen. And I know that while chemo and radiation are very important strategies in managing breast cancer, hormone therapy has been very effective in starving the cancer.   Knowing what I know now, I would not hesitate to take Tamoxifen again.  Like cancertakesflight‍ said, it's another level of security.
Only you can make a decision you can live with Shari, so understand the impact of either decision as well as your risk tolerance levels; you will do what you think is best when you have examined and processed all the information. When contemplating treatment decisions, I found it helpful to draw up a T chart listing advantages and disadvantages.  Wishing you well.
irishchick
21 Posts
cancertakesflight‍ ,
thank you so much for your response to Shari. This is very helpful to me as well. We're finally down to just a few days before my first appt at the cancer clinic meeting with my oncology team
Raven
33 Posts
Hi, 
I am not an expert or a Dr but I am a vet, and I have had endometrioid (uterine) cancer that was ER+. Having a complete hysterectomy was all I needed as it had not spread. They said it was due to excess levels of estrogen in comparison to progesterone that sometimes happens post menopause. Removing the tissue that estrogen had an effect on should do the trick. In your case you still have the tissues.
I think having cancer that is ER+ would be a good thing (as opposed to genetic errors), as it progression can be altered with the use of hormones blockers (Tamoxifen). A useful tool that a tumor with ER- does not offer. 
In animals diagnosed with early mammary cancer, we did radical mastectomies and ovario-hysterectomies, which often took care of the problem if there was no metastasis. It was likely because the estrogen levels would drop and no longer affect the mammary glands. Just like we neutered animals with early testicular cancer to change hormone levels.
I understand how you feel, I am not much for taking meds unless they are absolutely essential. A good oncologist will discuss the statistics with you so you completely understand the risk of any therapy. If the Tamoxifen makes a huge difference in outcome, say overwhelmingly positive, it would not be good idea to refuse it. Breast cancer treatment outcomes have so much improved in the last few years (compared to other cancers) and there are so many survivors. The (competent) oncologists have access to all the data generated by past therapies and choose those that give you the best possible chance. I do believe there is a very small increased risk of endometrioid cancer (Tamoxifen has an estrogenic effect on the endometrium) but I think they monitor that really closely when taking Tamoxifen)  I did my own research as I have access to the medical data through my work, so I had complete confidence in my oncologist and knew the statistics for my own situation and chose an excellent oncologist team in another (bigger) city to give myself the best possible chance. I wish you all the best, let us know how things are going! Raven

 
jeanie
45 Posts
Shari‍ Sorry to hear about your diagnosis. Remember you are not alone, there are 1/8 Canadian women having breast cancer and the survival rate is very high. 

I am 60, I had lumpectomy in my right breast in Jan 18, 4 lymph node removed (tested negative) in feb 2018, the lump was .9cm estrogen +, due to my oncotying score was 21 and my various other health issues, my oncologist spared me for chemo, so I started my 21 radiation treatments end of Feb and finished them at the beginning of April. Please take care of you skin exposed to radiation (there are many discussions you can search for more info) and I was also told not to take vitamin C during the treatment period. I started Tamoxifen 3 weeks after finishing radiation and continue taking it till now. My oncologist said it will reduce my recurrence rate from 12% to 9%. I went straight taking it even tough it may cause various side effects, my logic was - if you don't try, you wouldn't know. I also got my BRCA genetic test (qualified under OHIP with various family cancer history) and fortunately received a negative result. Since I have many other health issues, the side effects of Tamoxifen couldn't be easily isolated, in general - my joint pain worse at night, hot flashes (more at night), cramp at night, very fatigue. The joint pain is not as bad after few months. About the side effect of uterus cancer, my dr did not order a base line uterus ultrasound for me even though I asked several times, they simply said not to worry about it, it will be looked after promptly if bleeding. I also have osteoporosis, so I got a Prolia shot in July in my oncologist clinic, need to have it every six months for a couple of years I think. Prolia also has all kind of side effects, well, what can I do. I will have my follow up appt end of this month, hopefully all my tests will be ok. 

Taking Tamoxifen or not is a very personal decision, your dr will work closely with you and it is still your own decision at the end. A friend told me a recurrence story by not continue taking the med, but I think everyone's body, life and health condition is different, no one solution is right for everyone, unfortunately we can't go back to relive our life in order to test different decisions, so I just live with whatever I have, taking one day at a time, I think universe will take me wherever I belong. Hope you will find info in various sources to assist you making your final decision. Let us know if you have more questions.  

Take care and wish you all the best. 
Shari
7 Posts
Thanks everyone for your replies today. The OncoDX test was not mentioned, so I will definitely ask about it. I think the medical oncologist said my risk level was 5% if I don't take the Tamoxifen (but neither my husband or I recall what % the risk would go down with the drug). I will ask that again! Listing the advantages and disadvantages is a good idea. I have been doing that in my head but would be good to see 'on paper'. It is true as some of you said, that I don't want to regret whatever decision I make. I am postmenopausal, as one of you asked. They are suggesting 2 years on Tamoxifen and then switch to Letrozone (if that is the correct name; don't have that in front of me at the moment). I must say the side effects of the 2nd drug don't sound great either! But, I have to remember that different women react differently.It was my medical oncologist who said it was not a good idea to start the drugs & then stop them. Then I also read a study that showed the risks going up considerable if you start then stop; but.... Anyway!!!  I did not have to have chemotherapy, which I was quite happy about.  I was definitely fine (as fine as possible) about having the radiation because of the statistics they gave me about the lowering of risk. I had my 1st treatment (of 15) today as I mentioned. It went fine. Yes the skin care was discussed with me. I have found all of the staff very good. My treatments are in Ottawa, as we live in a small town near there. I was also told that the social workers may have a form you can fill out 'to help process the decisions', so I may check on that as well. Okay. Thanks again for your responses. Take care everyone. Shari
lizj
5 Posts
Hi Shari,
My diagnosis was similar to yours.  The doctor recommended tomoxifen and zometa as well as radiation.  I chose against the tomoxefen(sorry can't spell this word) because I saw the side effects and although it is helpful to reduce the cancer, it was presented as "could help" rather than will help.  I mulled over this decision and my gut said no.   Once in awhile I wonder if I made the right decision but since some of the side effects include depression, hot flashes and issues with uterine and ovaries, I felt that the side effects are not worth the maybe 2% extra that I have of cancer not coming back.  Like I said I could be wrong but since I've had so many issues with the areas of side effects I am more likely to have a major depression or cancer of my ovaries than having a recurrent cancer.   We all have reasons for our decisions but ultimately it comes down to what you feel is best for you.  Good luck with everything.
Shari
7 Posts
Thanks lizj. You are the 1st person I heard from that chose not to take the Tamoxifen. As an update, I have now had my 6th radiation treatment (out of 15). So far I have not had any side effects. I am really trying to take care of my skin and watch for any fatigue. I did decide to meet with my medical oncologist again, and was able to see him this week. My sister went with me as my husband was out of town. Although at 1st I/we felt a bit of 'why are you here again?', 'didn't you read the literature I gave you?', I did find it more helpful by the end. He certainly feels the benefits of the Tamoxifen still outweigh the risks despite the side effects (which he believes are often minimal). I already knew this was his opinion (or I guess he wouldn't be in the job he is in!!). One thing that was especially helpful was that he said it is not true that there is a 'higher risk' of recurrence if you go off the medication after starting it (your risk just returns). Someone else at the hospital said that they had not heard about this increased risk either. I had read a study which said starting it, then going off, increases your risk. I guess this reassurance is tipping me more toward at least trying the Tamoxifen. I have also heard of different women who had few side effects. I guess I still have a few weeks to make that final decision!  Shari
mitymite
35 Posts
Hi Shari, my diagnosis was very similar to yours. I completed radiation and have been on Tamoxifen for over 4 months. The biggest change I noticed was being off hormonal birth control (pills, hormonal IUD) after being on them for 10 years. These types of birth control have their own side effects, positive and negative. I was careful to monitor body aches and pains, pre-menopausal hot-flashes etc before starting Tamoxifen, after stopping birth control. For me, hormonal birth control somehow alleviated a bit of irritable bowel issues. So that has returned but I know it is not because of Tamoxifen. Also, I have not noticed much difference in night time hot flashes. I think I have a mild one at night, ?  I take my tamoxifen at bedtime. So, really, no side effects at all with the Tamoxifen. The meds are provided by my clinic, taking them ups my 10 year survival from 93 to 95%. Not a big change but since I find it tolerable (and free!) I'll take it! Hope this helps. All the best with your radiation and recovery. I was surprised how fast my skin improved after radiation so do not be alarmed near the end of your treatments if your skin is looking rough. :) m
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