Unsure about taking Als

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LDW13
LDW13 Member Posts: 6

Hello to all!

This is my very first post but I have been reading since January and this forum has been extremely helpful. I was diagnosed Jan 17, 2019 with invasive ductual carcinoma with lobular features. Had a bilateral masectomy on Feb 18th with reconstruction starting. I did not have to do chemo and declined radiation. Now I am faced with the last decision which is taking Femara. I am reading about all the side effects, some of which seem to be severe and can cause permanent damage. I found a site called ONCO assist and put in my data. It showed only a very mild 2% benefit to taking the AA's. I am so scared to take them and also to not take them. I have a meeting with my Onco on Friday and want to reach a decision by then.


Thank you for any help in advance!

Lauren


Comments

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    It's something you can try and change to another drug or quit altogether if you have bad side effects. You have to remember that all drugs have a long list of potential side effects (look at the list that comes with your bottle of aspirin). It is only natural that people who have difficulty with anti-hormonals (or any other treatments) are the ones most likely posting about it. The others are mostly just out living their lives. (I took Arimidex for 5 years with very little problems.)

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2019

    I am on the fence about taking them. I have been off 3 years and still feel some side effects. Nothing really bad just annoying. I was disappointed to find how little benefit I was potentially get from them. My case shows a one percent risk reduction. If I could go back not sure I would take them. Good to discuss your case with your oncologist.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2019

    L...did your doctor explain to you the risk reduction with respect to getting a second primary breast cancer in the same breast or your other breast? That risk reduction might be greater than your risk of a recurrence from your current bc. And remember, when we talk about recurrence of your current bc it is important to remember your risk of local recurrence (in the breast) or distant recurrence (outside of the breast).


    Once you have all of your numbers, then you can make an informed choice. That said, if you are healthy and don’t have any medical issues that might preclude you from taking an AI, then you shouldn’t be frightened of the side effects. Do people get side effects? Of course. But tens of millions of patients have taken AIs and do well.


    There are also some women who have debilitating side effects. The number of patients who don’t complete hormonal therapy is a higher number than what doctors would like to see. Once side effects do occur, it is important to articulate that to your provider. There are many things that one can do to mitigate side effect symptoms. Unfortunately, there are still some patients that can’t take them. But as Ruth said, until you try them, you will never know.


    I managed taking tamoxifen and letrozole. I even did ovarian suppression. Was it easy? No. But for me, it was doable, i do feel for our sisters that have struggled through treatment. I wish researchers could find better treatments and a cure....

  • dtad
    dtad Member Posts: 2,323
    edited May 2019

    LDW...I'm one who refused anti hormone treatment from the start for many reasons. We all have to make our own decisions. My best advise is do your homework. Not everyone has serious side effects. I chose to lower my estrogen naturally. I lost 30 pounds and try to exercise daily. I always thought that the combination lowered recurrence rates by 40 percent. However a member just revealed that an expert in BC told her that it is actually 50 percent! Ill take those numbers. Good luck with your decision. Please let me know if you have any questions.

  • LaughingGull
    LaughingGull Member Posts: 560
    edited May 2019

    As with any important decision, it makes sense to acknowledge and face one's fears, gather all the facts and make sure you have the story straight before you decide.

    Take all the time you need, and look at all the evidence, get a second or even third opinion if needed, until you are sure you have the clear picture of pros and cons.

    Why do you need to have reached your decision before you see your MO on Friday, and don't you want his/her opinion to inform your decision? Is there a reason why you don't trust your MO?

    I have no idea what onco assist is, just make sure all the specifics of your situation are evaluated before reaching a conclusion. Ditto with online advice. It is not easy to analyze medical data.

    Good luck

  • Runrcrb
    Runrcrb Member Posts: 577
    edited May 2019

    Lauren,

    You didn’t mention your age but since you mentioned Femara I will assume you are post menopausal. There are three different AIs, all doing the same thing. I started on one and then switched to another- my side effects cleared up quickly. As others have mentioned it’s totally up to you but please don’t make a decision based on posts and stories about bad side effects. The women struggling the most are most often on message boards looking for help. There’s a thread on this site called Doing well on AIs. You might want to read through it. Talk to the oncologist about your concerns and YOUR specific cancer, your overall health and your recurrence risk.


  • edj3
    edj3 Member Posts: 2,076
    edited May 2019

    I'm pretty sure I won't take hormone blockers. I can't take the AIs even though I'm post-menopausal because I already have osteopenia and I've broken a bone over training. My MO has suggested tamoxifen, but I've asked for additional testing to assess my risk of recurrence. If I'm in the ultra low risk category, I'll pass.

    I have no idea what my threshhold might be for considering the tamoxifen, so at this point I'm hoping the risk assessment gives me a clear, no-brainer kind of result: ultra low risk or OMG woman you'd be crazy not to take the drug!

  • LDW13
    LDW13 Member Posts: 6
    edited May 2019

    Thanks to everyone who responded. My cancer was diagnosed in Jan and I did not have to do Chemo. I had a second surgery because of problems with expander and finally met with the Radiologist last month. My benefit for Radiation was outweighed by potential side effects and if I have a recurrence it will be local. Here we are now in June and all I have had is surgery- removal of both breasts with reconstruction. I want to make a decision somewhat soon because this decision has been weighing heavily on my mind. When I meet with my Oncologist on Friday I will have a list of questions and concerns. Of course I want her input and help!! I will be 59 in July, so yes Post Menopause.

    All the above responses are very helpful! Given my low benefit from taking the Als I am leaning away from it, but still not sure. Losing weight-50 pounds overweight- and regular exercise are goals I am working towards.

    Both on Predict and Onco assist which are tools for the benefit of Hormonal therapy versus none, I am getting a very low 2% benefit taking these drugs. Its balancing the potential side effects and possible permanent damage to the body versus benefits. Thank you again!!

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2019

    LDW13, it does appear you are low risk for recurrence, so congrats for that. But, you cannot say that if you recur it would only be local. Cancer cells can escape into the blood stream and set up shop elsewhere in the body. That can happen even if no lymph nodes are involved. Also, I'm sorry to say, but your chance of local recurrence is definitely increased by not taking Rads. And since you also didn't have chemo, think very carefully about refusing your one and only treatment option left.

    I also did not have chemo due to a low Oncotype score. This was despite having two nodes with micromets. I did have rads and have been on hormonal therapy for almost 8 years. No serious SEs except hot flashes, which are manageable with Effexor.

  • LDW13
    LDW13 Member Posts: 6
    edited May 2019

    Pupmom, The Radiologist told me if I have a recurrence it would be local which could be dealt with, however I am afraid of a distant recurrence because I did have one lymph node involvement with extra nodal extensions.. I do understand that the cancer can come back in a different spot in my body. That is why I have been so unsure of refusing the one treatment left to me which is the Als. And that has the ability to work systemically. I suppose I can also try it and see how I do. Thank you very much!

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2019

    LDW13, yes, trying the drug and seeing how you do is the best approach, IMHO. Btw, I have a lot of family in Albuquerque!

  • jessie123
    jessie123 Member Posts: 532
    edited May 2019

    Is it too late to do the radiation? There really isn't anything to it. I'm more afraid of the Al's than I was the radiation. I also have to discuss Al's with my MO next Monday which I am dreading. I already have Osteoporosis and so will also have to take the Osteoporosis drugs which scares me even more. I got my Osteoporosis from massive doses of Lupron when I was in my 30's before a myomectomy for fibroids. and I've never done anything about it. So if I start the Al's it will become much worse. If you decide to take the Al's make sure to get a baseline DEXA first. I think my recurrence score without the Al's is 2 to 3 % so I'm like you - scared not to take them and scared to take them. Good luck Friday and let us know what your MO says and the decision you make.

  • LDW13
    LDW13 Member Posts: 6
    edited May 2019

    I have a 6% reduction in local recurrence if I do Rads but since I am undergoing reconstruction and had both breast removed I declined due to side effects. I think my best chance to keep the cancer at bay ANYWHERE in my body is the Als... But weight gain is one of the many side effects and I need to lose weight!!


    Pupmom, I am very close to Albuquerque, l live in a small town Los Lunas, 20 miles south of Abq. I moved here from Northern California, Sonoma County 12 years ago!! :-)

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2019

    LDW13, not familiar with that town, but we went to Albuquerque, from Texas, a couple of times a year when I was a child. Love the area!

  • LaughingGull
    LaughingGull Member Posts: 560
    edited May 2019

    I wonder why the radiologist said a recurrence would be local. Maybe that is typically the case for luminal A? I would be terrified to not have had systemic treatment.

    I am absolutely fine with the aromatase inhibitors, after a few months my side effects are minimal. And mind you, I had my ovaries removed (I was premenopausal before cancer) in order to start the AI so it was a big change. I have not gained weight.

    Radiation also was not a big deal for me, and I also had reconstruction -it just delayed the reconstruction for a few months.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    I upped my exercise, reduced my weight AND took Arimdex. I felt like the more I could reduce my recurrence risk (combining medical and lifestyle), the better.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2019

    I wonder whether the radiologist meant that the recurrences that radiation would have prevented would be local. That's strictly true, but for every three or four local recurrence that's caught and treated before it spreads, one manages to metastasize first. That's whey, even though radiation is a local treatment, it has been show to have an impact on overall cancer-free survival. Not as large an impact as AI, but definitely significant.

    Still, it doesn't sound like the radiologist explained very well/clearly. Not all doctors are good communicators.

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2019

    I had a positive node (luminal A) and not only did they radiate the heck out of the entire area (all lymph node areas as well), but they drove into me the importance of taking tamoxifen. My MO said if it's going to reoccur, it'll mostly likely be metastatic. Scary. Definitely do your research and talk with your MO, but honestly, I've seen this stuff reoccur metastatically many many many years later. I completely hate my life on tamoxifen, but I don't want to end up stage 4 like one of my relatives did because that would definitely be worse. I get the fear of side effects, I really do. I'm living them so I get it. But those cells can be dormant and hang out for a very long time, until they decide to start growing.

  • KBeee
    KBeee Member Posts: 5,109
    edited May 2019

    Do remember that because you did not have to do chemo, anti-hormonals are your only means of helping to prevent a distant recurrence. If it occurs elsewhere...bones, lungs, brain, it is no longer considered curable. Ultimately, you have to make the decision that's best for you, but many people assume that if it comes back, they'll just deal with it then, not understanding that at that point, you are trying to slow it's spread and not cure it.

    Anti-hormonals are no guarantee against recurrence, and no one knows who will recur. It comes down to how much risk you are willing to take, and if you'll later have regrets if things don't work out as anticipated.

    I certainly would not make a decision until you meet with your MO. Don't make a decision based on what anyone here thinks or what you read online. Make it in discussion with your MO so it is specific to your unique situation, and make sure your concerns are addressed.


  • LDW13
    LDW13 Member Posts: 6
    edited June 2019

    Wanted to update on my progress so far on Anastrozole!! I have been on it a bit under two weeks and so far so good. No side effects as yet, but some insomnia. I started taking it at night so hoping that helps some. Kind of a reverse action but makes sense. I hope I continue to feel this good!!

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