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Stopped Letrozole for One Month

I am curious if anyone has taken a break from hormone inhibitors for a month. I had surgery in January 2023 for invasive lobular cancer of the left breast and had a mastectomy. My oncotype was 13% and I had radiation therapy for 5 weeks. One lymph node was positive.

I have been on and off hormone inhibitors since last June. I started on Anastrozole and didn’t last long due to SEs. Then tried Exemastene for a short while and the SEs were really bad. Took a break for a couple of weeks and started Letrozole.

I did ok initially on Letrozole but after about 6 weeks I started having severe burning tongue and ulcers in my mouth. I had also been on rabeprazole for an inflamed esophagus (SE from radiation therapy) for 2 months. My blood pressure had also become elevated. I decided to take a break from both to see if there would be any improvement in my symptoms and I had also spoken to my oncologist about it. i saw her two weeks after stopping the letrazole initially. Since stopping, the ulcers have gone away as well as the burning tongue. My blood pressure is back to normal (120/75). It was as high as 160/88.

I let another two weeks go by without taking the Letrozole and of course I have been worried the entire time that the cancer is going to come back because I took this break. I did start back on it today and we’ll see what happens with the SEs. Unfortunately, by stopping both the Letrozole and the rabeprazole at the same time I can’t be sure which med was causing what SEs.

What I would like to know is if anyone else has bounced around from one hormone inhibitor to another with breaks in between during the first year after surgery. The whole thing is just so scary and every time I have some sort of physical problem, right away I’m concerned it’s the cancer coming back. Like right now I have had ear pain, my ear feels clogged and I have a painful node in my neck by my jawbone. I went to an ENT today and she said my ear looks fine but it’s probably a virus. The anxiety from all of this is just unbelievable for me.

Comments

  • lillyishere
    lillyishere Member Posts: 770
    edited February 14

    @sonya16, same here. I was diagnosed with ILC and 2 nodes were found positive. I had BMX and letrozole that I continued for 2 years. Then 6 weeks break and switched to exemestane. All this started in 2019. Different from your case I wasn't recommended radiation even with positive nodes. Letrozole was brutal and MO decided to switch to exemestane, he said that it needs 6 weeks for the body to clear from the previous medication. I am doing much better with exemestane. Also, not all doctors are the same. The one I am seeing is from a reputable breast cancer center.

  • mavericksmom
    mavericksmom Member Posts: 1,106

    Hi @sonya16 I had breast cancer three times. I had IDC in 2003 with chemo and rads, I refused tamoxifen and was too young for AI at the time.

    Then in Dec 2018 I was diagnosed with ILC in same breast. Had mastectomy (was refused a double mastectomy because my breast surgeon lied to me) with DIEP reconstruction. I went to FCCC in Philly and had to sign a packet of multiple pages of side effects I could get from Letrozole. It freaked me out, I initially refused it, then took it for six months, had side effects and quit.

    In Aug of 2022 I was diagnosed with cancer in my opposite breast. I had transferred my records to a local hospital and had already seen a new BS who was the one who gave me the script for my single mammogram. I had another mastectomy, and I agreed to go on Letrozole.

    My new MO told me there have been studies that say if women go off AI, take a break and then go back on them, the AI's are still very effective.

    If I had symptoms, I would stop the Letrozole but after a rocky first six months with bone pain, things got better and I have been on it for well over a year.

    Bottom line, if you go off of them, you can go back on. You are already doing the right thing by talking with your MO! I find the best advice comes from medical oncologists we have confidence in.

  • sonya16
    sonya16 Member Posts: 56

    Thank you Lillyishere and mavericksmom for your responses. You both have made me feel much less apprehensive about stopping the letrozole for a while

    Lillyishere, I didn’t know it takes that long for the meds to clear your body My MO had me going from one to the other with only a weeks break That is something I’ll have to talk to her about. Also, did the Dr tell you why they didn’t recommend the radiation? I was led to believe that it was a foregone conclusion that I would have to have the radiation therapy because of the positive node, although my oncotype was low


    mavericks mom, thank you for the reassurance regarding stopping and restarting the letrozole. So your side effects from the letrozole subsided after six months? Do you have any side effects now that are hard for you?

  • lillyishere
    lillyishere Member Posts: 770

    The surgeon consulted with radiology, and based on their assessment, it was suggested that the potential benefits I would receive from radiation might be outweighed by the potential side effects.

    Additionally, there is concern about the impact on the left side of my breast and its proximity to the heart, although this aspect is still unclear. Currently, I am seeing both the oncologist and the plastic surgeon.

    The medical oncologist I am seeing is well known and has advised that a minimum of six weeks is needed between switching medications. Let us know what your MO is going to suggest.

  • sonya16
    sonya16 Member Posts: 56

    Thank you for the information. I will speak to my MO about this. I can tell you that the radiation, which I had to my left (reconstructed) breast also encompassed my lymph nodes in the collarbone area. My right breast was radiated as well because there was also a very small cancer right behind my nipple. The radiation did cause some changes to my right lung although I am told that it is minimal at this point. I asked for a chest xray last September because I was concerned about heart and lung damage, even though they say it is much more targeted today.

    I have a lot of anxiety about the cancer spreading because it was found in one of my nodes and I have been on and off the hormone inhibitors so much. So now that I have a swollen tender node right below my ear/jaw and my ear feels clogged, im freaking out that it is the cancer spreading. Ugh.

  • bchmom03
    bchmom03 Member Posts: 10

    @sonya16 , I too had ILC, only 4mm stage 1 grade 1, node neg. I had a breast reduction surg and DCIS was found in 2 places in the rt breast, plus atypical lobular hyperplasia in the breast tissue that was removed w the reduction. I chose a dbl mastectomy and thus the tiny ILC was found in the left breast. That was May 2023. They had to go back in 2 wks later and take axillary nodes, thankfully were neg, but have nerve issues there now. I have yet to go on any hormone blocker. Oncotype dx was low. I am menopausal. I already have osteopenia. Struggle with depression, chronic pelvic pain from pelvic mesh that was used for a bladder lift in 2009. I just need quality of life. I too have so much anxiety regarding a possible recurrence. I am going the natural route, seeing a Functional Med dr and I still see a Med Onc every 6 mos now, since I am refusing further treatment as he calls it, meaning he does not have to monitor me for the side effects from Letrazole. I do use estriol vag cream 3x a wk, or I wld not be able to have sex. It keeps the scarring from vag mesh soft and helps with genitourinary symptoms of menopause. I have a CA25.29 cancer marker test drawn every 6 mos now. It was 9, they want it less than 38, I believe. I had the SGAP reconstruction with the dbl mastectomy, have another stage of that in Apr. This has taken a toll on my marriage and you find out who your friends are for sure. Many cannot handle how this has changed me emotionally. I am trusting the Lord to guide and direct me. You have to do what feels right for you and research things. Hang in there. I do get the freaking out.

  • sonya16
    sonya16 Member Posts: 56

    Hi bchmom03,

    Thank you so much for posting this. I’m so sorry you are going through this; but it is reassuring to me that someone gets what I am going through emotionally. I was doing pretty good initially after the first surgery which was a lumpectomy on both the left and right breasts, but a week later I found out that the pathology report came back on my left breast with margins that were not clear. I had to go back in December, after having a pet scan, oncotype, etc for a mastectomy and I had immediate reconstructive surgery with an LD flap. Three days after surgery I developed a large hematoma and had to be rushed back into the OR to find the bleeding and my flap was reversed temporarily. Well, that’s when my emotional health took a beating. I was laid up for a month because I had lost so much blood and had to build myself back up for another surgery in January 2023 to put the flap back. At that point I knew anything could happen and the anxiety built up big time. So then radiation in May thru June 2023 ( that was delayed because I tripped on the last stair going up to the second floor in my house and broke a rib). You can’t make this up, right? Now back and forth on hormone inhibitors.

    My marriage has also been going thru some rough spots. I don’t see how that can be avoided really. To compound everything I also have a bad hip suddenly and I am not as active as I was which is depressing in itself. I had also retired from a job I loved last March. So a lot of big life changes, right?

    I also agree 100% that you absolutely do find out who your friends are. Initially they were supportive but of course they don’t understand the emotional toll this has taken. I pray every day to God to help me find the emotional strength to get past this and to try to rein in all of this worry and anxiety because my logical mind tells me that all the worry in the world is not going change anything.

    I have also considered going the natural route, I have been trying to find a naturopathic physician in my area.

    thank you for getting the ‘freaking out’. Those close to me don’t get it at all!! I really do appreciate your response, believe me. Thank you again.

  • mavericksmom
    mavericksmom Member Posts: 1,106

    If doctors only knew the stories behind the cancer! @sonya16 and @bchmom03 I think you both represent more of what the normal emotional feelings going through breast cancer are. The medical community seems to ignore or try to minimize emotions. I had to reach out for emotional support in 2019 and was assigned a social worker who specialized in cancer patients. I reached out again in 2022 for help and was told "join a breast cancer group!" Breast cancer isn't easy to deal with and if someone had a mentally easy time with treatments, they should consider themselves extremely lucky!

    Unless one has gone through it, they don't get it, and it isn't their fault when doctors are largely unsupportive. I remember after my IDC in 2003, I didn't even know anyone who had breast cancer. My BS told me now that I was diagnosed, I would meet so many women with BC. I did and I actually had a male co-worker who had it too!

    Once I had that dx in 2003, my mother and sister were soon diagnosed with it. My sister would also be diagnosed with non-Hodgkins lymphoma at the same time! A few months after I had a mastectomy due to ILS in same breast in Dec of 2019, my other sister was diagnosed. In 2022, my right breast showed IDC and I finally got the right mastectomy I was denied in 2019!

    I don't know what to say to either of you, but my heart goes out to you! Emotional stress of breast cancer is largely ignored by the medical community. An occasional webcast isn't nearly enough! We need mental health care personnel to be PART OF EVERY BREAST CANCER PATIENT'S TEAM!

  • threetree
    threetree Member Posts: 1,258

    Mavericksmom - Really good thoughts and spot on stuff in your post. Glad you put it out there as it really needs to be heard and understood by many!

  • sonya16
    sonya16 Member Posts: 56

    So I’m somewhat anxious because I missed yet another week/10 days of letrozole. I was so sick with some type of virus. As I mentioned in my post of February 14, I had a terribly sore lymph node in my neck and a clogged ear. During the past week I developed a sore throat, fever and cough. Still feeling a little crappy, ear still clogged and I’m very tired. So I couldn’t bring myself to add the letrozole back into the mix again what with taking antibiotics three times a day as well. I started taking it again last night and called my MO’s office today, got the nurse who just said ‘you have to keep taking it”. I know that but is my cancer going to come back because I have been so non compliant? I really haven’t been on any of these pills long enough since last July as I had problems with the other two before that. Omg I’m so worried and it’s my fault I know.

  • mavericksmom
    mavericksmom Member Posts: 1,106

    @sonya16, relax! Stop worrying. The nurses have to say that. My MO told me they have done studies that say even women like myself who quit letrozole for almost two years before going back on, benefit from it.

    Relax, you will be perfectly fine!

  • sonya16
    sonya16 Member Posts: 56

    mavericksmom, thank you so much for your response. The nurse really did upset me yesterday; I felt that I wasn’t being listened to about my concerns about not only stopping and restarting the letrozole several times, but my concerns about some of what may have been side effects that I wanted investigated. I was getting mouth ulcers and my tongue was burning. I stopped it initially to see if this would subside, which it did. Whenever I start taking it again I also start getting what looks like a rash or breakout on and around my nose. I went to an ent about the mouth issues and she wanted to run some autoimmune testing. I told her I would ask the MO to do so, and at my appointment with my MO I asked her to do that and she told me she didn’t think she could on her end as my insurance would not cover it. I already have Hashimoto’s thyroiditis which is an autoimmune disease and my mother developed lupus late in life. With that genetic possibility I was concerned that the letrozole could trigger that which I read it could do, as well as other autoimmune disorders, under those conditions. But that concern was not seriously considered. I know there will be some side effects with anything but at the same time I would just like my questions answered. And then of course the worst part is knowing I really do need to be taking something to reduce my risk of recurrence. The further out I get without taking anything the more anxious I become.

    But mavericksmom, please know that you did make me feel better about my ‘non-compliance’ , as the doctors and nurses like to call it, with the letrozole by noting the studies your MO told you about regarding this.

  • mavericksmom
    mavericksmom Member Posts: 1,106

    @sonya16 Happy to help! All doctors/medical personnel, work for us, not the other way around. I have been in your shoes more times than I can count, feeling I am not being listened to. Don't give up!

    What doctor do you see for your Hashimoto's Thyroiditis? Is it your MO? If not, I would make an appointment with that doctor. I don't know what the cost of out-of-pocket autoimmune testing is, but I had to pay out of pocket for my genetic testing. (over 50 genes) It wasn't excessively expensive and was well worth the money!

    Do you think anyone with Hashimotos Thyroiditis may be able to help you? I found this support group online. I am not sure BCO can give you answers about autoimmune testing. Please continue to stay here (BCO), I just wondered if another group might offer some help, looking at it from a different perspective?

    https://www.smartpatients.com/communities/hashimotos-thyroiditis

    Wishing you some answers! Keeping you in my thoughts!

  • sonya16
    sonya16 Member Posts: 56

    Thank you mavericksmom, good idea to follow up with the Dr. that manages my thyroid testing. I do have an endocrinologist but only see him maybe every year or so to keep an eye on the thyroid itself. My primary periodically will do labs and test my thyroid hormone levels. I am sure my primary will do the autoimmune testing for me. I have to call him anyway about possibly getting a z-pak for this respiratory infection I have which seems to have gone deeper into my chest. And that brings me to my decision to wait until I get over this cold or whatever it is before I restart the letrazole. I don’t want to muddy the waters on whatever symptoms I have from that with what I am feeling from this infection.

  • mavericksmom
    mavericksmom Member Posts: 1,106

    Oh @sonya16 I am so happy to read you have a plan! Yes, putting Letrozole aside for a bit is a smart choice IMO. I am lucky because my side effects from the drug are minimal now, and I can separate those caused by the Letrozole from those caused by other things. It can be difficult to do that at times like you are going through now, so taking a pause makes perfect sense!

    Many women have paused Letrozole as I did. Would I have had IDC in my opposite breast had I stayed on the drug? Who knows, but I don't think the Letrozole would have made any difference and I am actually glad my IDC was found when it was and not when I was much older! My MO told me not to worry about my Letrozole pause, so I don't!

    We make the best choices we can at the time and move forward. I am sure you feel much better now that you have a plan in place! You've got this!

  • sonya16
    sonya16 Member Posts: 56

    Thank you, mavericksmom, for your support. I really appreciate it so much. I feel like this respiratory infection is beginning to resolve and in a few days I will begin taking the letrozole again. I know that my MO is not going to be happy with the fact that I stopped taking it again for a while but I felt that it was important to let my body heal from this infection first. She has also been after me to add verzenio to the mix in addition to the letrozole but I am very hesitant to do so. What I don’t understand is that when she initially brought up taking the verzenio in addition to the letrozole it was an option but at my last two visits she wanted me to definitely take it. Why she had moved in that direction, I don’t know. None of my follow ups have shown anything distressing- mammogram, chest xray, blood tests. I know that in one of my lymph nodes taken during my surgery there was evidence of cancer cells present, but as I said, verzenio was only brought up as an option after my radiation therapy. This is something else I have to discuss thoroughly with her at my follow up appointment next week. First I have to get back on the letrozole and adjust to that.

    Thank you so much for your responses. It has helped me look at the situation more clearly to make a decision that works best for me at this point in time. The pressure from the nurse to not stop the letrozole at anytime at all, with no further discussion, only fueled my anxiety about the cancer returning.

  • mavericksmom
    mavericksmom Member Posts: 1,106
    edited February 26

    Oh my! @sonya16 You just resolved the issue with Letrozole, now they want to add Verzenio!

    I would first check with your insurance to find out if that drug is covered and how much it will cost you. If it's more than you can comfortably afford, it ends there. If it is affordable, then check out and read about the many side effects like diarrhea. Type Verzenio in the search bar at the top of the page and you will see multiple threads about the drug. The best resource on BCO is the forums because it allows you to hear from members who have experience with issues/drugs you want to know more about.

    Just because a drug has a lot of side effects doesn't make it a bad choice, at least to explore. I found that out firsthand when I went back on Letrozole.

    Adding medications, no matter what it is, should never be taken lightly, especially those in a category that I call hypothetical medications, medications that are not for an existing problem but theoretically, might prevent one. Examples are AI's and Tamoxifen. They know what the drug does, but don't know if a patient would ever have metastasis or recurrence of cancer if they didn't take the drug. I am much less likely to rush and take a hypothetical drug than one given for something that is actually happening in my body. DON"T LET THEM PRESSURE YOU!

    I would tell them you are open to taking Verzenio, but need time to decide and that is not negotiable! Then do your research, see how you do on Letrozole alone, then decide if you want to add a new drug. YOU ARE IN CHARGE OF YOUR BODY!

    I did research for 7 years with a major drug company. I know how expensive it is to get a new drug to market. I also know how salesmen and women push doctors to prescribe the drugs the company they work for has. I am not saying that Verzenio is a bad drug, only that it is a new drug and that you have every right to take your time before adding it to your medications. I do hate the fear mongering that goes on with breast cancer drugs! I don't mind doctors telling me about medications and explaining why they recommend it for me, but if they start putting pressure on me to take it, or like my first MO with Letrozole, insist I sign a multi-page list of side effects stating that I read and understand them, well that is a huge red flag!

    Sorry for the rant, but I want you to know you have every right to take things one step at a time!

  • sonya16
    sonya16 Member Posts: 56

    Thank you again mavericksmom for your response. I agree with you about the verzenio, and how new the drug is and it’s use for preventative care. I do know that my RO had told me that it was used for cancer that had already spread but more recently it’s been used as a preventative measure. I can tell you that from the little I’ve read about it already, I am very reluctant to start that. I would prefer to go back on the letrozole and give that a chance for a few months before I even think about starting Verzenio. There seem to be quite a few possibly daunting side effects. The diarrhea, of course is the most common. And yes, I feel like I am being pushed in that direction which makes me very uncomfortable. I agree with you in that I’m sure it’s not a bad drug, but unless there’s some overwhelming reason that I need to start it, I would prefer not to at this time. I’m sure the MO will tell me it’s because I had the cancer cells in one node. But I am going to ask her why she gave it to me as an option to think about initially, and has now decided that she wants me to add it. As it is, I’ve been trying to get my life back on track since this whole thing started and to start taking all these medications, unless it’s really necessary, is not something I want to do.

    Having done research for a major drug company for seven years as you did, you would know firsthand how these drugs are pushed on the market to breast cancer patients and the physicians that care for them. That in and of itself tells me to be cautious about this moving forward.

  • sonya16
    sonya16 Member Posts: 56

    Well, I am still not feeling well from this respiratory infection I have. It’s been over 3 weeks now. The fatigue is overwhelming. So I have not restarted the letrozole and I have so much anxiety about that. I am so worried that I feel like this because I haven’t taken the letrozole and the cancer has come back.

    I spoke to my primary yesterday and because of the length of time I’ve been sick, he agreed to put me on a z-pack to see if things improve.

    Help! My anxiety is through the roof about not taking the AI and the consequences that may be occurring as a result.

  • salamandra
    salamandra Member Posts: 735

    sonya,

    I think there are some pretty nasty bugs going around. I had one in between surgery and radiation, and it lasted basically a full month. I hope you feel better soon!

    Please try not to stress about the break from the letrozole. It is quite common to have breaks. I was younger for my first occurence, and my onc even told me that as far as they can see there is not a negative impact of breaking for long enough to get pregnant, give birth, and do some breast feeding.

    Cancer is not a punishment for not taking our drugs right, and the drugs aren't magic. You could take the drugs perfectly and recur, or never even start the drugs and stay cancer free. The results are a crapshoot, but the process is in your power, and it makes sense to take your present quality of life very seriously.

  • sonya16
    sonya16 Member Posts: 56

    salamandra,

    I so appreciate your thoughtful response, which honestly helped me to think about the break I’ve had from letrozole in a more rational way. I do have a follow up appointment with my oncologist on Monday and I intend to speak with her quite frankly about my concerns and hopefully she will address them.

    My primary Dr did say that there have been a number of people with this lingering illness and it isn’t unusual.

    How are you doing on the anastrozole? I see that you were young (and still are!) for your first occurrence and I am somewhat reassured by what your oncologist told you about taking breaks with the AIs. However, because there were some cancer cells in one of the two lymph nodes that were removed, I have a higher risk. I can only hope that the radiation that was done knocked the hell out of it but who knows?

    the past two days I have noticed that I have rib pain right under my right breast that hurts when I reach upward and the ribs in that spot are very tender to the touch. I am anxious about that now of course because I have read that is a symptom of metastasis. Seems like there is always something to worry about. Of course with that and the terrible fatigue I have I worry that it has returned. I feel like I have become a raging hypochondriac! Ugh!

  • salamandra
    salamandra Member Posts: 735

    I've had 3 shots of monthly menopause so far, but only started the anastrazole last Monday. I'd been having some hot flashes but it's like they went on turbo. I'm a naturally cold person, and I haven't had much sweating, but it bothers me most at night. I wake up for each one because I kick off my blankets. But then I wake up again when I get cold after and need to put them back on. My sleep has been terrible and I'm exhausted. I know sleep is one of the most important building blocks for health and I've never been a great sleeper anyway. I asked my doctor to prescribe me something that might help with the hot flashes and she is checking to see what is not contraindicated for my other meds, but she said that even the most promising treatments take time to work. In the mean time, I'm tired-er each day. UGH.

    But other than that, it's been ok. I'm definitely achier and creakier, need to sit less and move more, and feel like I look ten years older, but so far these things haven't interfered with my life the way that the sleeping thing does.

    I was thinking of trying the Embr Wave device.

    When I met with my oncologist, I wouldn't say I had a venting session, but I did share a lot of things that have been bugging me both about the process and the treatments and even the structure of the healthcare. She spent almost an hour with me and I appreciated it so much. She didn't always have the answers I wished she had, but I felt confident she was giving me the best information she had access to explaining it to me in ways that made it meaningful.

    She also said that this part of the process is incredibly hard for a lot of women - basically finding a new emotional equilibrium after the initial cancer treatment. Technically the cancer is out and hopefully (though like you say, impossible to know) gone, but we have so much to adjust physically, emotionally, and mentally. This felt very validating.

    From what I have read here, generally doctors reassure patients not to worry about a new pain until it has persisted for at least a couple of weeks. But I know that my doctors would encourage me to call with my concern (or send a portal message, which I generally find easier) any time. Let them know about the new symptom, and let them give you a mental framework of when to start worrying about it what to do with it. That is why they got the thousands of hours of education and get paid the big bucks to do.

    Also - I see a psychiatrist through my cancer treatment center. In this f—ed up medical system, it actually turned out to be the only way I found a good psych that was actually in my insurance, and I would have stuck with him as long as I could even if I hadn't had the recurrence. I have had a long history of depression and anxiety (which in retrospect I think was actually 90% grief plus stress plus undiagnosed ADHD). I am currently on two meds that technically have the potential side effect of increasing anxiety (buproprion and methylphenidate), but my anxiety is actually lower than I would have ever expected it to be (after a spike around the whole diagnostic process), and I think that's partly because he helped me find a combination of meds that actually work for me and the soothing effect of my knowledge that if my mental health does start to go sideways, he is there to help me.

    Short acting anti anxiety meds were definitely helpful during the earlier diagnostic stages, and still sometimes to help with sleep. Pharmaceuticals aren't for everybody (I have friends who can barely tolerate OTCs like advil), but if you have access to decent mental health care resources, it can be a godsend.

    I personally haven't been able to find a therapist who is both a good fit for me and affordable on an ongoing basis. But I did have an initial meeting with a social worker from my cancer treatment center (years ago), and I would strongly recommend that if you can. Since she was with the cancer center, she had a lot of science knowledge but also the communication skills and experience to help me talk through things in a different way than my medical doctors who are more focused on discrete aspects of treatment and physiology. She also knew everything about resources available to me - not just what I could google for myself but things that are actually working for local women. And she was a very supportive listener.

    Wow, this turned out to be a novel. I guess I had stuff to get out! Thank you for asking :)

    I hope the new pain turns out to be something totally fine and unrelated. Bodies are funny and weird.

    Hang in there!!

  • sonya16
    sonya16 Member Posts: 56

    salamandra,

    I definitely feel for you on sleep issue. I only started up the letrozole three nights ago and already the past two nights, I wake up at 3:45 in the morning. been a great sleeper. I have been using .5 MG of Ativan only at night to at least get four or five hours of sleep. You are correct, without sleep how can you ever heal? Especially still trying to get over whatever it is that I have. My legs are so tired and weak. And it’s very frustrating, isn’t it? Especially when you’re used to doing so much more.

    Believe or not, my breast surgeon is a lot more open to discussing my concerns than my oncologist seems to be. he even gave me his cell phone number to call whenever I have a question if I call my oncologist office or I’ll ever get there as a nurse. So my appointment with her is tomorrow and I’m writing my list of questions. If I don’t write them down, I will certainly forget them in the midst of any discussion we’re having.

    I have also always had a tendency towards anxiety, I guess I just think too much and ruminate. Of course this whole ordeal has just put me over the edge, along with my retirement last year. I really really miss my job, but I suppose it’s a good thing I did retire because it wasn’t the kind of job you could take a lot of time off from. But I miss interacting with other people. Maybe if I can get all this crap behind me, I can do some volunteer work somewhere.

    I am seeing a therapist via telehealth once a week who takes my insurance. Looking for tools to curb my anxiety, and also to give me some direction. However, she does not have the science background or the same resources that those at the cancer center would have.

    Someone once told me years ago, that only intelligent, creative people have worries and anxiety. So we’ll take that, right?

    I would just like to get out of my own head and be happy again. Ive fallen into such a slump. This is how bad I am.- I had a hair appointment yesterday and I canceled it. That’s just a small indication of the slump I’m in if I don’t even want to go and do that. However, to be honest, I’m still not feeling well from whatever I’ve been sick with.

    are you getting the Lupron shots for the menopause? Those are once a month? And you’re taking the anastrozole?

  • bchmom03
    bchmom03 Member Posts: 10

    @sonya16 , I am sorry I have been AWOL from this site a while. How are you doing? I too freak out regarding the least little pain. I am having such neck issues, I had them before, that is why I chose a breast reduction surgery, the wt was so much on my small frame. The lengthy mastectomy and immediate SGAP reconstruction surgery was over 12 hrs. The positioning really messed my neck up worse. Been struggling now for almost a yr with it, A recent dental procedure to remove a Bad root canal tooth caused more neck pain. I try not to even go there as far as What If it is something more than arthritis in my old neck, etc? I still have not started the Letrazole. My quality of life right now is too low as it is. I miss my natural hormone replacement I was on. It was not much, but goodness it sure helped me feel like me and decreased the anxiety and I slept better. I am looking for my Joy to return One Day. Again, I hope you are over your resp illness and doing much better over all. God bless.

  • sonya16
    sonya16 Member Posts: 56

    Bchmom03,

    I apologize for the delay in my response. Thank you so much for your message. I am really glad I’m not alone in freaking out over every little thing. I myself am tempted to stop taking the letrozole again because I just never know if I’m not feeling well from an illness or not feeling well from the letrozole. My respiratory infection did get better although for almost a month I was exhausted.

    I too miss the old me. And I’m sure the letrozole isn’t helping. What Also concerns me is that, although my overall white blood count is normal, my lymphocytes are low and have been low since radiation, but they were starting to come back up and at my last blood work two weeks ago, they dipped down again. And for the past few days I’ve been feeling like I have a very low-grade fever so I don’t know if that’s from letrazole or if I’m actually fighting something. And then when I call the oncologists office and get one of the nurses they’re not any help. I’ve also been getting palpitations on and off during the day for the past week or so which don’t hurt but they’re uncomfortable feeling. I feel like all I ever do is complain, and I’m sick of myself!!!! Ugh.

  • bchmom03
    bchmom03 Member Posts: 10

    @sonya16 Just checking in. Hope you are over the low-grade fever. Possibly just a minor bug? My lymphocytes were low after a virus of some sort too. I do fret over it though. I guess we cannot help but fret. Looking forward to this weekend and Easter. Our daughter is coming from Dallas. I do have another phase of the breasts reconstruction coming up 4/19. Getting jittery about that some. It should be the last thing. I have some asymmetry should not be a long procedure. Neck creaks off and on, tight shoulders. I know stress plays at part. I try not to go to “what ifs?” I understand the sick-of-myself. I know my husband probably is tired of all this too. I cried about the upcoming procedure the other day to him.I really feel I need to do it so I will feel whole. A double mastectomy and immediate reconstruction with back fat flaps was so hard. The asymmetry is a mind thing for me, plus uncomfortable with too much boob underarm going on. Just want things as right as they can be. I am def thankful for the reconstruction with native tissues. I am too allergic for implants. Hangeth Thou In There! I am doing my best too:-)

  • sonya16
    sonya16 Member Posts: 56

    Hi bchmom03,

    Thanks for checking in. Yes, I finally got over whatever virus I had. And I suppose that it’s normal for the lymphocytes to drop when you’re sick. How wonderful that your daughter is coming in from Dallas. I haven’t seen my daughter since Christmas but I hoping to fly out to California soon to see her.

    I understand how you must feel somewhat nervous about the upcoming surgery but if it is just some refining that will be done it should be so much easier than the mastectomies and flaps. I only had the one mastectomy and LD flap and that was hard!!! But in the end much better than implants because who needs all the things that can go wrong with them? Also they would eventually need to be replaced anyway. I too am thankful that I had the reconstruction with my own tissues.

    i know I was always a person who is full of what ifs and this experience only amplified it. I am working on trying not to worry so much!!

    Have a lovely Easter with your daughter. You will be in my thoughts and prayers for your upcoming surgery.

  • sonya16
    sonya16 Member Posts: 56

    So I’m on another break from letrazole. I started gettin heart palpitations out of the blue about 2 1/2 weeks back on letrazole. I tried to ride it through hoping the palpitations would stop. I called my MO and the nurse called me back telling me to stay on the letrazole and that it’s not a side effect. I did read in several places that palpitations do occur, particularly in women over 65. But I continued to take it and the palpitations got worse. So I decided to experiment and stop it to see if the palpitations would stop. Within a week they diminished by 80/90%. Coincidence? Maybe. I then called the MOs office to tell them this and they told me to take a 2 week break and then call back to discuss. I do have an appointment with a cardiologist at the suggestion of my MO and my appointment is next week.
    Now, since I’ve stopped the letrazole, I’ve lost 6 pounds very quickly and not intentionally. I may have lost more but I’m afraid now to get on the scale. I’m having problems with my throat again, it feels sore and I feel like I constantly need to clear it. Of course the stress now of losing weight is affecting my appetite. With all this starting and stopping of AIs, my anxiety is in full swing that I have cancer somewhere and that is why I lost 6 lbs in 3 weeks. I do feel physically tense all the time, I don’t sleep well ( I was up at 3:30 this morning) and now I just keep worrying. The anxiety just keeps getting worse. I don’t know what to do at this point.