Six Month Club - Tamoxifen or not

embee

I've been an active reader of these boards for 18 months - this is my first post.  I was DX with ADH and ALH in right breast in June 2012 on excisional biopsy. Had follow up with medical oncologist as well as Dana Farber high risk team re preventative Tamoxifen. My breast surgeon has been STRONGLY advocating for me to start Tamox - oncologists encourage but at end of day say the oh so helpful "it's a personal choice"....I am screened every 6 months alternating MRI and Mammo with clinicals at each appointment. All has been quiet thus far. Except that each appointment my surgeon talks with me for about half an hour about Tamox. He says I am in perfect window at 50, not in menopause, healthy, active. I also made significant nutrition changes in 2013 eliminating dairy, processed, gluten which has dropped weight from 135 to 125. Since these changes my breast tissue on self exam is significantly softer and surgeon agrees clinicals are "easier". However he says radiologically my breasts are "a nightmare to look at" due to dense tissue, etc.  I am hesitant on tamox as side effects worry me (uterine cancer increased risk, weight gain, other including the possible unknowns...(in generaly i am just not a big fan of big drugs...)...but given how much time and effort my surgeon is putting into me i am being a fool not to listen??? He also has wife who is survivor of invasive BC....I am well informed and very plugged into my body and health - am  I being stubborn for wrong reasons. I know alot has been written on these boards on this topic but not always easy to locate so thought i would start my own thread! 

Also my risk is said to be 35% - family history includes Invasive BC maternal grandmother. i have no sisters and no maternal aunts and one paternal aunt who has no history. 

Any thoughts would be appreciated!

ballet12

Apparently, Tamoxifen and the Aromatase Inhibitors help in reducing breast density.  I am not taking them at this point, by choice, also because of concerns with side effects, but thought I'd tell you about the breast density issue.

I think my risk was about identical to yours, around 35 percent.  Family history of mother with IDC as well as my prior diagnosis of ADH and ALH.  Fortunately only diagnosed with pure DCIS. After treatment (surgery and rads) the risk is substantially reduced.

embee

Thanks very much - any information is helpful to me!

embee

Been a busy 6 months - or rather 2 months....My regular 6 month mammo was June 18. Left or "good" breast showed calcifications on additional diagnostic mammo with follow up recommendation in 6 months.Noticed breast dimpling on self exam in front of mirror late july. Saw BS and had clear ultrasound.  Had been thinking of being evaluated at major boston Breast Center for some time versus more local breast center on North Shore. Decided to use this as good time for second opinion on my whole situation.  Saw new doc Monday - unfortunately their radiologist had not reviewed my prior images before I came.  Clinical was fine - he was not concerned with dimple. Suggested Raloxifene since Tamoxifen was not well tolerated (probably won't do)....Apologized for not reading films and said they would do right away and call. Which they did the next day to say their read showed faint pleumorphic calcs in spot that has gotten additional views for last 18 months - BIRAD 4. Having stereotactic biopsy today in Boston. Would prefer not to have pleumorphic in the report but hoping for the best and expecting an ADH/ALH dx as i have in other breast and hope for nothing more. Now time to really try to get on board with the chemoprevention....thanks for listening!

salvia

embee--

I also just became a member of the six month club...and was interested to read your story because it sounds very similar to mine. I will have my first MRI in six months, following my excisional biopsy for microcalcifications that showed flat epithelial cells with atypia. I have a thirteen year history with mammo (various results, but this latest one has been the most significant and extensive), starting at age 35 (am 48 now) due to my mom having breast cancer. I am now trying also to decide if I take the wait and see approach, take Tamoxifen, or have double mastectomy. I also am not a big fan of meds, though do see they have their uses at time. 

I hope you will give an update if you're comfortable. I don't often post on these types of things, but the emotional roller coaster of this makes me want to reach out and connect with others going through something similar. My mom suffered through a lot, and the memory of all that surfaces at these times.

Best wishes and prayers to you on your journey.

wpd364

I am a new member. Hi! I was diagnosed with DCIS stage 0, low grade. I have history on my father's side. I just finished Savi radiation and started taking Tamoxifen. I felt the risks were less then with  arimidex. I am experiencing heart palpitations and weakness in my arms. Today my doctor told me to stop the pills, wait for the symptoms to abate then start the meds again. 

I was against taking the pills in the first place ans let my doctor talk me into them. My risk for invasive breast cancer is 6% without them and 2-3% with them. I am not sure the side effects are worth it. Can anyone give me some advice? Do the side effects go away after some time? I don't like feeling this way. 

Thanks for listening...

Moderators

 Salvia and wpd364, welcome
to Breastcancer.org. We're sorry you have to be here, but glad you found us!

Besides sharing your experiences and learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101section from the main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

Also reliable information on DCIS — Ductal Carcinoma In Situ, where you'll learn about symptoms,
diagnosis, treatment, etc.

Possibly of interest too is the Oncotype
DX Test and Tamoxifen

We hope
this helps!

The Mods

embee

Happy to share.  My stereotactic results showed LCIS and ALH (and flat epititheliial atypia - which I also had in right breast two years ago along with ADH, ALH). I am having a surgical biopsy on Friday. The radiologist who did the core biopsy said the calcifications were linear going deep into the breast - which is probably why that breast still looks like a punching bag and is sore! Neither of the 2 breast surgeons i have seen have been concerned about the epitithelial atypia but might have been if that was all i had. Given the ADH, ALH, LCIS is present is  a little more along whatever this "pre" spectrum of increased risk so they focus on that. I am fairly on pins and needles with anxiety. I know that on the off chance the pathology were to be upgraded it would still be a very early situation. I just hate any type of surgery. For now still not doing meds - waiting to see what this result is. Also a big fan of diet changes! I will keep you posted. Thanks for your share.

salvia

I can understand how you're feeling about surgery, I haven't done well under anesthesia in the past and was very anxious about how the biopsy was going to go. I was sedated but not under general anesthesia, and I woke up feeling great. Just thought I would share this with you, and hope that you have a similar result. And then of course the waiting for the results....that is so difficult. You'll be in my thoughts this week, and hope you get some good news. Thanks for your response, and take care.

MileHighStew

I had a biopsy on my right breast back in March due to a mass that was discovered on a mammogram and ultrasound. The mass was benign but ALH was found. I had a lumpectomy in May and started tamoxifen in June. I have my first 6 month check up coming up in 2 weeks and I'm feeling stressed out of my mind.

I have a friend who battled breast cancer 3 yrs ago who was a huge support to me while I was going through my ordeal. She had one of her 6 month check ups a couple weeks ago. Her cancer has returned in the form of stage 4 metastatic lung cancer. She's my age (43) and has been turned over to hospice care.

I'm sure what has transpired in the last few weeks is greatly adding to the stress of this upcoming appt. When I met with the oncologist in June, I was told it would lower my risk to get down to a healthy weight. I have gained about 50 lbs since losing my Dad last Sept. I haven't been successful at losing any weight, if anything I might have added a few lbs since starting the tamoxifen. Another symptom of the recent stress is a missed period. I'm like clock work, even during stressful times. 

Thank you for letting me vent. I sure hope the stress level isn't as extreme every time I have a check up. 

AndreaJ50

Hi MileHighStew,

This has been a rough year for you; I am so sorry . Weight gain is very common with Tamoxifen, as well as missed periods. We all deal with stress differently; I am also a stress eater.

So sad about your friend. But her story might be totally different than yours. I wouldn't fear mammograms at this point . I would view them as a great tool to catch any changes in your breasts early on. 

I had my six month MO exam today. My doctor and I both agree I should lose about 40-50 lbs. I also have some spinal compression so exercise would be a good thing.

Go easy on yourself. Losing a parent is traumatic. Diet and exercise are the only ways to lose weight, maybe you can find a local place to exercise. 

Because of my spine pain I am starting out small with riding a stationary recumbent bike for 5 miles. Best of luck with whatever you decide to do.

Take care,

Andrea

MileHighStew

Andrea,

Thank you so much for your kind words of encouragement. It's a comforting feeling knowing someone else understands. 

embee

Dear MileHighStew,

I am so sorry to hear about your friend and the loss of your Dad.  I also lost my Mom in May of this year and my Dad 4 years ago. Our lives change forever when we lose a parent - time eases the pain and memories and good thoughts and prayer help alot - but i agree that life is forever altered and it's an immense transition.  

I have also found the six month cycle to be very, very stressful for the past 2 years. At best, I don't start getting worked up until 2 months before with the anxiety of going, whats it going to show, blah, blah.  I am religious about my breast exams - but that's also stressful. Weight gain can definitely be a side effect of tamoxifen so if you can get on an exercise plan that works for you that will help. Walking 30-40+ minutes a day 4-5 times a week is great. While i am much older than you at 51 ....my periods were very regular still coming about every 28 days. Interestingly i never got another one after my 6 week stint with Tamoxifen. doctors say it's a coincedence. 

One last note is that part of my decision to move from our very good suburban breast center to more major center in Boston - MGH is that they has the 3D mammogram which i feel is the best technology to have in my toolbox for these breasts that seem to have of mind of their own! Also I always, always, always get copies of all radiologist and path reports so that i am informed and educated and can ask questions. 

Will update on my biopsy results next week! Take good care!

MileHighStew

Embee,

I'd like to thank you as well for your words of encouragement and great advice. Thank you for sharing your story. Sending positive thoughts and prayers your direction for a negative biopsy result!

GardenGal777

Hello,

 I have been on another thread for over a year now and happened to catch this conversation by accident. I too was diagnosed with ADH. I had a stereotactic biopsy as well as breast surgery to make sure all remaining cells were gone. I had my one year exam and nothing seems to have changed although next year I will have the 3D mammogram due to my dense breasts. I chose not to take tamoxifen. While I have a slight increase in risk it still means I am 93.7% at not getting breast cancer. I have a greater chance of having a car accident. Sometimes we forget the other side of the statistics. Everything has a percentage of risks from routine colonoscopies to crossing a street. The side affects are pretty strong in Tamoxifen and I my situation I feel our weigh the stats for prevention. 

I noticed many of you being told to lose weight and there is strong correlation between excess weight and breast cancer. There are some things that you cannot control such as heredity but you can do something about eating right, exercising and weight loss. Sometimes it seems easier to swallow a pill than make health changes. Just 15 minutes of walking a day can make a difference. Also estrogen increases when there is a higher percentage of fat in our bodies and breast cancer feeds on estrogen. It makes great sense to lose the weight for the sake of your breasts. It's not easy to do but well worth it. Think of it as a lifestyle change and not a diet as a diet is something you eventually go off of and therefore tend to regain the weight. But a lifestyle change is something you do for life.  

I wish all of you well in your journey and in making sound choices.

salvia

Thanks for posting your story, GardenGal. Although I know that everyone's situation is personal and unique, it really does help to hear others' thoughts and perspectives on the choices they have made. Best wishes to you.

mvspaulding

hi everyone, I try to stay away from these boards because I find myself getting anxious but it's that time again. My follow up appt is tomorrow and I hate how nervous I get each time. I was diagnosed with ADH in June of 2010. Have had two scares with biopsies since that time but both came back benign.  I was given a recommendation for Tamoxifen but decided against it since I have problems with endometriosis too. I pray all the time that I didn't make a bad decision there. I have not had an MRI although it was recommended to me 6 months ago. Mainly because I was on a High deduct health plan and couldn't afford to pay the entire cost of it. I guess we will see what my screening and mammo shows tomorrow and then I may have the MRI. Just wishing tomorrow was over already. I saw mt gyno dr last month and she was happy I was having my checkup this month because I am "lumpy". Just have pesky breasts.

embee

Dear mvspaulding,

Good luck tomorrow. I am on pins and needles too waiting for surgical biopsy results to come back. I think iI slept about an hour last night! It's a nerve racking club to be in but when I really get overwhelmed I try to remember that in many way's we've been given a pretty important tool and it's sure better to be ahead of BC than behind it.

Good luck tomorrow.

embee

momoschki

I certainly know how stressful these 6 month checks are- I have been on this roller coaster since a dx of ADH the beginning of 2011.  I keep hoping it will get easier, but I'm not sure it has.  I just don't think that in our situation, it is realistic NOT to be anxious.  I find I start to ramp up, anxiety-wise, about 6 weeks ahead of time. I have a mammo coming up next month.  Certainly, things could be much much worse, but I find this whole situation just pisses me off and I often feel like I am living just waiting for the other shoe to drop...

Hoping you all have very boring results on your upcoming tests and then a very good night's sleep.

mvspaulding

thanks embee and momoschki! It always helps to talk to people who understand how scary this is. And I like your comment that we are ahead of breast cancer not behind it!  I am going to try and sleep now. Best wishes to you too embee for boring benign results!

MelissaDallas

Momoschki, that is me. I don't get so much anxious anymore. More just annoyed and pissed off. With my new high deductible insurance I can't afford the MRIs anymore, but actually the standard of care doesn't recommend them for me anyway.

Last go-round was another biopsy that I KNEW was going to be nothing and it in fact turned out to be just an atypical cyst. Ugh!

momoschki

Yes, Melissa, it just ticks me off that 6 months roll around so quickly and all the screening crap starts all over again ( plus, I still do get incredibly anxious.).  As screenings creep up, I find myself saying things like "well, we have tentative plans to do such and such", unwilling to commit and thinking silently to myself, "IF it turns out I am ok."  I still can't believe I go to the oncologist twice a year.

Btw, I also said no to tamoxifen due to a hx of endometrial issues and having cataracts already, but nearly 4 years later, I'm still obsessing over whether I made the right decision.  Oncologist seems apathetic about the whole question.  I often get the feeling that he is not terribly interested in me, as he deals with people who have far more serious issues going on.

ballet12

I was never told to do this kind of screening back in 1995, when I first had a finding of ADH/ALH.  I'm so glad that I was spared the misery that you guys go through every six months!  I only did yearly mammos and sonos.  I did have two more surgical excisional biopsies prior to my diagnosis in 2012, but those were benign.  I did consider Tamoxifen back then, but it was only being tested in clinical trials.

Best of luck.  And yes Momoschki, I do think that oncologists aren't that interested in us (DCIS included).  In a way, that's fortunate.

embee

Hi everyone, after a nerve wracking 5 days, I got a call that my biopsy does not show cancer, just more ADH, ALH and the new entrant LCIS. I have not actually seen my report yet - I will get that this morning. Need to read up more on LCIS. I'd probably like to start a movement to change the name to remove "carcinoma" when it isn't. Huh? Anyway, i knew this was the best news I could hope for in my case so i am relieved and looking forward to a respite till the next screening time rolls around. That's supposed to be mri in december - maybe that will be delayed due to post op biopsy site? Don't imagine they would get a good read in that mess. Anyway if anyone has thoughts on LCIS being added to the ADH,ALH equation I 'd like to here. I've heard it's must more ALH that takes up the whole lobual or more of it. I will be moving my follow-up care from suburban breast center to MGH in Boston as prefer to be dealing with only specialists who deal with breasts day in a day out. And I agree, it's good to be boring in this case but it can be really hard because on a relative basis to us these issues and whether to take meds are not are very, very big decisions. Also plan to get back to cleaning up the edges of what's been some good nutrition changes over a year ago but i've taken some liberties with especially with the stress of the last month! And a good nights sleep felt GREAT last night for a change. This thread has been a huge help over a tough few weeks. Thank you all!

MileHighStew

Hi Embee,

I'm so happy your biopsy results showed no cancer! Hopefully you'll have many nights of good sleep in the coming days! 

mvspaulding

Embee,

So happy for you, I too had a good appointment.  No biopsy this time, benign calcifications that haven't changed since last mammo.  I have to have my MRI in 6 months or sooner.  I think I will make it exactly 6 months.  

momoschki

congratulations on good outcomes!  Let the boring results continue!

Anonymous

great news all around!  Keep your fingers crossed I get good benign news from my upcoming mammo on Oct 1st.

Anne

salvia

Embee...

Sorry I'm so late in congratulating you on your news...have had a few things going on and haven't been back on the board in while. I agree, though everyone here has their own individual struggles, and not to downplay anyone's issues, it really is a difficult position when trying to decide what to do as far as meds and/or preventative surgery. 

I struggle with the tamoxifen question in part because I am a reluctant medicine-taker (though I truly do see the use for it when used appropriately; I was on antibiotics for over 3 months when I had Lyme disease) and for another part, I understand that it prevents certain types of breast cancer, but what are the chances that I am predisposed to develop the type that it prevents? I also am a DES daughter, and have been careful about not taking any kind of hormones, but I just don't know what to do now. I am going to try to seek a 2nd opinion if my insurance will allow it, and go from there. I have several months until my 6 mo MRI, but the time will go quickly.....

Sorry to digress...I am happy for your news, and wish you (and everyone here) well.

GardenGal777

Hopefully many of you saw the study of oral tamoxifen and an application form that is applied over the site. Studies show that it is very successful and does not have the side effects that the oral version has.

momoschki

Gardengal-- are you taking about the topical form of tamoxifen?  My understanding was that it is not yet approved and so unavailable.  Am I wrong?  This sounded to me like such a potentially good option.