Femara

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.

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.

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 said:

Maybe this will be helpful

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

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.