Just diagnosed, hormonal concerns

Mon750

Hey all! I knew this was coming after seeing the results of the screening mammogram I had done on 8/16. It said "spiculated mass with architectural distortion". Diagnostic mammogram (9/1) came back BI-RADS: 5 and they fit me in next day for biopsy. The results were completed by late Friday but no doctors were available to call. Instead, someone accidentally uploaded it to My Chart and I got the email notification at 7am Saturday morning. This was actually a big relief because then at least I knew, I have invasive ductal carcinoma. And thankfully it seems to be early stages. By the time Monday rolled around I was getting very anxious to speak with a doctor, nurse, someone. I finally got the call Tuesday morning and I think the doctor on the call (not the doctor I had seen) thought he was breaking the news to me until I said "Yeah, I know, I saw the results Saturday". I have MRI and genetic testing tomorrow, still waiting on HER2 results. It is ER/PR positive, which I think is supposed to be good. I am still trying to process and going over the process and facts helps with that.

To be honest, I was accepting that I would need surgery, radiation, maybe chemo, but for some reason the fact that I will have to stop taking hormonal birth control (that I have been on for probably 20 years) and will likely need hormonal therapy is really concerning me. Over the last year I discovered that when I go off the pill for a week I have issues from the lack of hormones (at least that seems to be the case), such as headaches and muscle pain. Pain relievers do not help much at all. This would get so bad that I could barely think straight for days. My OB/GYN suggested continually taking the pills and that worked, no more awful pain. After a couple months of the pill I would still get something like a period, but no extra pain. Now I have to go off the pill permanently and I am scared to do that while I am going through this process of testing and doctor appointments and setting up a plan. I have seen forums of women that had the same issues as me with the hormonal pain during their periods, but it seems that in general most doctors seem to have no answers for this. I am wondering if anyone has had a similar experience when going off of the pill and doing hormonal therapy. What can be done to help with the headaches and muscle pain when pain relievers do not help? Super grateful for any suggestions!

ThreeTree

Hi Mon750 - I'm really sorry that you have had to come here and that you are dealing with what you described above, and I'm also sorry that I can't really address the issues you are concerned about (I'm 68 and haven't had anything to do with birth control in years and years), but I did want to tell you that re the MyChart upload, I don't think it was accidental. There is a new law in place per my understanding that requires results to be posted as soon as they are available now. Many places used to hold them until a doctor had reviewed them and could call, but not any more. It's just started to happen recently. Of course, some prefer this method and others don't, but that's my understanding of what's going on now.

Wishing you the absolute best with your treatments.

Mon750

Oh that's interesting and good to know! The nurse definitely thought it was an accident and apologized for it happening that way, but perhaps it did happen as it should, as you've said.

Thank you for the well wishes!

jhl

Hi Mon750,

Yes, the federal law is part of the 21st Century Cures Act & it allows access to all your health records in real time so you & your provider get results at the same time. As far as your birth control, yes, you will need to stop taking them. Since your tumor appears to be ER+, the goal is to reduce your estrogen to the lowest possible level. This will be something you'll need to discuss with your medical oncologist. He/she will have some suggestions to help you. Until then, try to stay well hydrated and exercise. The more consistent exercise you can do the better you'll feel.

Good luck in the days ahead,

Jane

ubershop7

Hi! My story was similar to yours. I knew my dx was breast cancer before they called me bc the report said spiculated mass and architectural distortion, too. Almost always means cancer. Not sure of your age. I am assuming your still in childbearing years. Discuss with you oncologist, who you may not meet until after you heal from surgery, and before you start rads like me. I do not beleive you can be on bc pills and hormonal therapy at same time . I ended up having a bso. But I was 50 at the time yet not in menapause yet. Best of luck to you:) Ps I was on low estrogen bc pills until I was 42, and my migraines and mood swings stopped whe I stopped taking them. Give yourself time to adjust. Exercise and Mediteranean diet helped me with the joint pain of hormonal therapy and bso.

BtwnStars

Sorry your find yourself here. But seems like you are on track to get good info and get a plan in place.

I had been off of BC for 10 years when I started getting heavy periods that were affecting quality of life and ability to work. I went back on BC to address this and it helped tremendously! It was about 18 months and I rec’d my diagnosis, also hormone positive. I often wonder if the BC contributed to my diagnosis.

Initially that was a big fear, I stopped using Bc immediately when I found out. I thought the debilitating heavy period would return but surprisingly it did not. Chemo put me in medical menopause and I haven’t had a period since I started.

You may need a stronger pain reliever. There are a lot of ways to choose on this.

I encourage you to continue to voice this concern with doctors and make sure they provide some sort of plan or ideas to address. Also get a second opinion.

moth

I'm sorry you find yourself here.

I think anticipatory worry about the hormone issue is absolutely valid and it sounds like it has really been a big quality of life issue. But also...there is a bigger elephant in the room - you have a cancer and honestly, that is a much bigger issue now. If you end up needing chemo, it will likely hault your hormonal cycle. For many of us, chemo induced menopause was permanent. Endocrine therapies etc will also change everything. There are many changes and challenges ahead - it really is best to just take it one step at a time and not get too far ahead of yourself worrying with what if's. Just know that for almost everything, for symptoms, for side effects, for issues that crop up, someone here has likely been through it and there's nearly always some medical treatment or solution. (almost everything...no solution for stage 4 but everything before that... well it's fixable, manageable, tolerable, adustable....).

Hang in there - it gets better. The first few weeks are the worst.

(& yes, it is law now in the US to make test results avail as soon as they're done. Now that you're going to be scanned and tested frequently, you can decide whether you're ok seeing them in advance or whether you'd prefer to wait to discuss with the doctor, in which case, do not check your portal)

fingers crossed for good results today! let us know how you're doing & again, sorry that you find yourself here at all, in this stupid club

Mon750

Thank you everyone for the info, tips, and encouragement! I really appreciate knowing that there are so many kind people out there willing to take the time to help answer questions. It's all so overwhelming and that really helps.

My initial diagnosis was only in the right breast. I had my MRI yesterday and got a call this morning that they see something suspicious in the left one. I have dense breasts so I guess it was hiding in the screening mammogram. I am scheduled for an ultrasound to check that out next week. I looked at the MRI and it doesn't look spiculated like the other one so I'm hoping for the best.

I am 40 yrs old and the screening mammogram was the first one I've ever had. I did put it off for almost a year and now I want to tell everyone I know to make sure to have your screenings done!

ARmom4

Sorry to hear about your diagnosis. Hopefully the other breast is just from the dense tissue. I was 35 when I was diagnosed. I am also ER+ (and PR+ and HER2+). I was not on birth control at the time so I can't speak to that. I do know that you have to get rid of the Estrogen. It helps your cancer grow. Nobody wants their cancer growing. That can kill you.

I opted to have a double mastectomy and also a total hysterectomy. Instant surgical menopause. My main complaint was hot flashes. My MO but me on Oxybutynin and the hot flashes have diminished. So, I hear your worry about the hormones. It is valid and important. Of course, you should voice your concerns with your MO. I think (and I'm no doctor), that the sudden drop in hormones when you previously stopped the pill, contributed to your terrible symptoms. Maybe you can slowly wean yourself. Start taking it every other day, then every 3 days. Or cut the pills in half and take a lower dose. That's what I did when I stopped taking antidepressants.