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Femara

Muggles45's picture
Muggles45
Posts: 4
Joined: Jun 2016

Hello,

I was diagnosed with uterine cancer five years ago with lung mets. Afer a histerectomy and two surgeries to remove nodules on lungs, I was put on Fermara. The side effects are bearable, however, seem to become worse with time. I don't know if this is " normal " or whether it's an indication of something else occurring. At my last 3 month scan, it revealed "something" on one lung measuring 2 mm X 5 mm. It had not been present in the preceding scan. I am terrified. When I asked/insisted that a PET scan be performed or any other measure to determine whether it was malignant, I was told it was too small at this point. I haven't accepted it well. Sutely there is something to give an indication. I was told not to worry, often things of that sort happen.

Well, I'm a nervous wreck and will be until mid-October. I've come to believe the Femara isn't any longer effective and I'm walking around with a malignancy in my lung. Surgery isn't an option, I don't believe. 

So, I have two questions that really don't have clear cut answers. Does Femara produce worse side effects as time passes? As well, does anyone feel that I should be looking at second and third opinions regarding the new development. To be honest, I don't think I have much will left to do anything. My husband is good in many ways, however, he is totally unable to offer any emotional support. (He just doesn't know how.) I have told no one in my family and no friends. I don't want to be treated as if I'm some pathetic human being. So, I fake it really well and seem just like the old me. Nothing could be farther from the truth. If I could, I'd lie on the bed and read and take naps so I wouldn't have this constant worry and anxiety attacks.

Any advice would be wonderfully helpful.

Thank you so much.

Muggles

MAbound
Posts: 871
Joined: Jun 2016

I think we all live on the edge of anxiety after treatment and it doesn't take much to rachet it up at all. I'm so sorry that your last scan showed something, however minor, that has put you into this frame of mind, but I'm sure most of us would have the same reaction in similar circumstances.

That said, I would offer the same advice that we give to other's when they first come here: take a breath. Not so easy, I know, but heightened anxiety is not going to solve anything. If you have a rough road ahead of you, you really need to be able to sleep to deal with it. If you can't get a handle on it, then perhaps talk to your doctor about an anti-anxiety med to help you as you wait for things to play out. Many do it when first diagnosed to get through to when they get that all-important treatment plan and there is no harm in doing it again in circumstances like these. You have every right to be anxious, but that's a counterproductive state of mind and no one thinks you should have to suffer through it.

Second or third opinions never hurt. If you get a consensus, it may help you to calm down. If not, then you won't be sorry, either. Those are small dimensions and a PET does have limits as to how small it can give you any definitive answers, so keeping a wary eye on it for a while might be the best course. There have been others here who have had benign lung nodules show up that scared the bejeebers out of them, too. I'm hoping one or two of them will chime in for you shortly. The thing is, this cancer doesn't grow that fast and you are on an inhibitor that should be slowing things down, too. You have time to work this problem. Waiting isn't easy, but sometimes that's just what you have to do.

As far as the femera symptoms increasing with time, I have no experience with it. You may find this article for breast cancer may helpful:

https://www.breastcancer.org/research-news/effects-more-severe-for-hormonal-tx-after-surgery

Perhaps you also need 2nd or 3rd opinions on coping with these side effects, not just on the concerning spots.

Hope this helps you.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Dear Muggles, while you have us to lend an ear, perhaps there is someone you trust who will listen and be able to give you a hug or a smile of acknowledgment?  Of course, we are always here, and it is good to hear from you.

I think MA has given a lot of good suggestions, including the additional opinions. 

Take care of yourself and try to get out and get some fresh air.  I hope you can find someone to talk to and give you a hug.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

double post

Fridays Child
Posts: 74
Joined: Jul 2019

Muggles, I have been on letrozole since last September following chemo and radiation for a  recurrence, and I have noticed changes in the side effects which often seem to coincide with a new bottle (I get the 90 day bottle). Some seem to abate and some new ones show up, things like that.  Seems strange to me, too.

Unfortunately for me, my last CT showed slight enlargement of the tumor in my hip (which we never completely eradicated) so now we have to discuss what to do next.  I hope you are able to get enough information to reassure you, and I agree that a second opinion might be helpful.

barnyardgal
Posts: 222
Joined: Oct 2017

I am on Letrozole (femara) as well and have been for a little over a year. I was 3a. So far I've been fortunate and haven't had issues with the medicine. It is normal, though, if you have issues with the medicine, for the problems to get worse over time. My Dr put me on Vitamin d, which she said might help with joint pain. So far I haven't had any pain. Hope you feel less anxiety. MAbound had great suggestions that might help.

MoeKay
Posts: 216
Joined: Feb 2004

In my opinion, these scans are both a blessing and a curse.  They can find things that are so small so we are told we need to "watch and wait," when what we end up doing is "watch and worry."  My problem with a chest CT was different.  Ten years ago today I went to the ER in the middle of the night with a severe cough.  I ended up being told by the ER doctor based on a CT scan that I had metastatic cancer to the lung as well as bacterial pneumonia.  Well, to make a very long story short, after seeing two pulmonologists, being on antibiotics for months, and having lung biopsies during which my lung was punctured, it was finally determined that I had neither metastatic cancer to the lung nor bacterial pneumonia.  What I had was eosinophilic pneumonia that required months of steroid treatment. 

I would have an experienced pulmonologist or two review this scan as well as your prior scans and history.  I found that expert opinions can often differ significantly.  While the "sometlhing" on your scan is very small, it is causing you anxiety, so any reassurance you can get would likely help your mental state.  Also, I have a friend who is a cancer survivor.  When we were diagnosed with different cancers 20 years ago, we called on each other in times of stress to talk things out.  Recently, she had a cancer scare and contacted me.  I told her I thought the issue she was experiencing with her pap test was likely due to radiation damage, and that eventually turned out to be the case.  If you have access to a cancer support group, you might find someone there with whom you feel comfortable sharing your feelings and concerns.  It's hard to act as if nothing is wrong when you are experiencing severe anxiety, so having someone you can talk things through with is extremely helpful. 

Wishing you the best. 

oldbeauty
Posts: 194
Joined: May 2012

I will chime in to say that I am a recurrent patient (2005 Stage IC, Grade 2 endometriod adenomcarcinoma) with a first recurrence in 2012 to a para-aortic node, confirmed by biopsy, and scattered lesions in both lungs, not investigated.  I was treated with radiation to the node and high dose progesterone, which, together, renedered me NED until 2017 when a second apparent recurrence was discovered in four nodules in my lungs.  They were too small to biopsy and neither radiation nor surgery was indicated.  My oncologist at the time opined that, based on my prior history, it would be prudent to presume the nodules were malignant and treat with chemotherapy, which I did.  I maintained remission until, possibly, December 2018 when a single pulmonary nodule was seen on a CT scan.  Like you, not much of a detailed analysis was possible.  This time, I opted to watch and wait, and in April 2019 a re-scan showed no growth.  Now I am on tenterhooks, like you, waiting for the October re-scan.

I am frightened and anxious but I am fortunate in that I have a very supportive husband who has been emotionally available and is in therapy now to build up his emotional reserves for when I do undergo treatment again (and to prepare himself to survive me). And I have dived into a renovation of the house we bought last year to give myself a space that pleases me, and this project is keeping me busy and entertained, which is important.  However, I recently decided to change my mind about participating in a group metastatic womens cancer therapy specifically to talk out loud about these kinds of fears and how one comes to a place where I can function at an acceptable level notwithstanding the medical determination that I am terminally ill.  I actually feel absolutely fine, and the only substance I am taking now that, to my mind, is aimed at maintaining remission is Metformin (following takingcontrol58's advocacy).  But in my heart of hearts I am not at a point where I am confident that the next scan will continue to show stable presence.  I am hopeful but not confident.  That is cognitive dissonance, I think, and that is difficult for the brain to hold onto with mental calmness.

This all to say that you can have had lung mets diagnosed and still experience a single nodule that could show stability at your next scan.  That may not alleviate your anxiety because, of course, there will be another scan several months down the line.  So, I would say go to a trusted provider who can listen to your concerns and symptoms and talk to you about what various medicines are available to address those.  You might also consider modalities like mindfulness training, yoga, meditation.  Or, re-engaging with a hobby or interest or open yourself to experiencing new things that might become a hobby or a group effort you can lose yourself in, at least for a little while each day or each week.  And exercise.  Do get out of bed every day and take a walk, or a bike ride.  Exercise does elevate your mood.  

And, if the worst happens, the nodule has grown and is capable of positive diagnosis, have faith, as I do, that a treatment is available that could get you to another remission.  In the long run, if you are a recurrent cancer person, I am convinced now that you are better off getting yourself into some kind of moderator-led therapeutic modality, either individual or group therapy, because it is difficult to come to terms with what the future may hold.  

I wish you peace and best wishes in navigating this tough road.  Know that you are not alone and you will find support here, and, hopefully, where you live, to address the very real and rational issues that are going through you mind right now.  Oldbeauty

Fridays Child
Posts: 74
Joined: Jul 2019

Your message resonates with me because I am in a similar situation with respect to the expectation that, even if I should achieve remission now, I'm likely to go through cycles of treatment, remission, progression, and more treatment for the rest of my life, or just one treatment after another.  As you say, the cognitive dissonance is jarring.  Thank you for expressing it so well.

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