Starting on targeted breast cancer meds.

Sorry you are dealing with this! At first I thought you were describing a recurrence at the original site vs stage 4, but then I wasn't sure when you mentioned spread down your arm and into chest wall, and also that there is a lung nodule. Do you know for sure that you are stage 4? I hope the lung nodule can be properly and safely assessed.

I hope someone in the same situation chimes in. I can only say that I did letrozole for 5 years with preexisting osteoporosis that was pretty significant. My doctor did not prescribe the usual Reclast to protect bones, due to my afib which was a concern at the time (no longer). So my bones did decline quite a bit. I did Tymlos after letrozole and my density is now better than before cancer. But most people go on Reclast or Zometa (zoledronic acid) or Xgeva (denosumab) to protect bones and have added help with cancer in the bones.

I seem to lose some hair with every med I take but less so with letrozole. I had some joint pain that was alleviated by walking more than 20 minutes (first 20 hurt, then I felt good- onco said this was common).

I am 10 years out. I have a nodule in my lungs that needs to be rechecked, and have a small lump between breast area and armpit. Double mastectomy in 2025. My oncologist discharged me after 5 years so I will go to PCP first to evaluate.

Keep us posted and again hope someone with more experience responds!

Hi @ginny100
Sorry to hear you are dealing with breast cancer and treatment again. I had a double mastectomy in 2013 for stage 1 BRCA2 positive BC. No other treatment per their recommendation. 7 years later, I had recurrent BC in my chest wall and muscle, 3x as aggressive with Ki-67 50%. I had the tumor resected and there was a positive margin. I had 37 radiation treatments that hopefully took care of the positive margin. My oncologist told me my BC was so aggressive this time that cells likely got away to other areas before we resected the tumor. I'm not a candidate for chemo due to my pre-x neuropathy, but he said he wasn't sure chemo would work for my cancer anyway. So after radiation, I started on Kisqali and Letrozole and have been on them for 3.5 years and so far no cancer is visible on my CT scans. It takes millions of cancer cells together to create a visible tumor so it could still be there, but not progressing, but either way it is good.

Yes, I can still live and enjoy life on these meds, but they do have side effects. Note that I always have adverse side effects from meds. I first started Kisqali 600 mg, but I immediately got QT prolongation which is a dangerous heart rhythm that only 4% of patients get with this med. We stopped and till my heart rhythm was normal and then reduced the dose to 400 mg and that rhythm didn't come back. I did start having issues with afib on day 5 and it has continued for the past 3.5 years though. Not listed as a common side effect, but it happened to me. Both the Kisqali (CDK 4/6 inhibitor) and Letrozole cause fatigue, hair thinning (not bald, but my hair is thin and less healthy now). I had an issue with constipation the first year. Some joint pain in knees and shins from letrozole. My blood pressure went down. It also causes neutropenia so you are somewhat immunosuppressed. I'm cautious, but I have been really sick 3 times in the past year and it took me a month to completely recover, but I have lung issues as well. Note that two months after I started those meds, I started octreotide for neuroendocrine lung cancer and it also causes fatigue, hair thinning and other issues so it can be hard to know which med to assign side effects to sometimes. The bottom line is that I plan to continue on all my meds so long as they keep working. I'll address CDK 4/6 inhibitors and lung biopsy in separate responses. Prayers for you.

@ginny100
CDK 4/6 inhibitors -- which one to choose?
There are three to choose from, Ibrance, Kisqali and Verzenio. They have some similar side effects, but each has some unique side effects. Kisqali's main issue is the possible heart rhythm issue. Verzenio causes severe diarrhea for a lot of people and that's a deal breaker for me -- no quality of life there for me anyway. Ask your oncologist why Ibrance has been selected for you. My oncologist started to put me on Ibrance and then changed to Kisqali because he said the latest clinical trials at that time indicated that while all three showed progression free survival time, Kisqali was the only one that extended overall survival time. The literature I've read confirms that, but maybe your oncologist has other info or anecdotal stories to share.

@ginny100
Regarding a lung biopsy:

Did they tell you how your biopsy would be performed? With a needle from the outside or how? There are many methods to do lung biopsies depending on the size and location of the tumor.

I had a lung biopsy due to my rare neuroendocrine lung cancer (not related to my breast cancer). Mine is very slow growing cancer (Ki-67 2%). They first discovered over 50 tumors in both my lungs back in 2008 with a CT for chronic bronchitis. They wanted to do a biopsy, but the largest tumor was buried deep and only about 1 cm then and they couldn't reach it with any certainty any way except to filet my chest and lung and I felt that was too much to go through and recover from so I declined. They were guessing it was either metastatic cancer with an unknown primary cancer or it could be something benign. They were baffled. I was not going through a major surgery just to hear it was benign.

Fast forward to 2020 when my breast cancer came back. The largest lung tumor was now 2.6 cm and they said they could now successfully do a needle biopsy from the outside. They insisted on the biopsy to see if it was related to the BC. I anxiously and reluctantly agreed. I was as concerned as you are. The biopsy took about 45 minutes, 8 tissue samples, while I was awake. They went through my back into my lung. It hurt some, but not unbearable. Note that pain meds and sedatives don't work on me. It was not a pleasant procedure, but doable.

There was a 15% chance of getting a collapsed lung and I did get a partially collapsed lung afterwards. That caused chest pain, severe fatigue and breathlessness, but healed up in about a week. Again, doable. I was borderline of having to go in the hospital so I chose to stay home to heal. I just had to go for a chest xray every day to monitor. I did not need a tube inserted. I later had microwave ablation to successfully destroy the largest tumor and that also resulted in a partially collapsed lung, same story. They believe the reason I likely got the collapsed lung both times was because I had a chronic cough and they think the coughing didn't allow the opening in my lung to heal.

There is an 85% chance you will not get a collapsed lung. Ask about that. Maybe procedures have even improved in the past four years.

A biopsy will tell you if the tumor is related to the breast cancer or not. It may not be and, if not, the treatment may be different. It turned out not only was mine not connected to my breast cancer, and not only was it a rare neuroendocrine lung cancer, but I also have an even rarer condition called DIPNECH (only 300 documented cases) that is what causes me to have so many tumors and all the respiratory issues of chronic coughing for 30 years and shortness of breath misdiagnosed as asthma. The DIPNECH is why 20 doctors over 12 years couldn't figure out what was in my lungs until the biopsy. Most doctors still have never heard of it. I can't have my lung tumors resected because there are so many tumors scattered across my lungs so we'll just destroy any that become 2 cm or take off from the pack as those are more likely to metastasize. Most are 1+ cm now. I have advanced DIPNECH, but after all these years, my neuroendocrine lung cancer is still considered stage 1 since it's confined to my lungs.

Please share your decision and outcome. Prayers for a good outcome all the way around.

I’m sorry you are going through this! I can only comment on Tamoxifen because I did not take the other drugs you mentioned. First, let me give a little of my background. I was diagnosed in 2014 with Stage 4 breast cancer mets bones. I took Tamoxifen for 6 months. I did lose my hair (which I knew was going to happen and I was ok with that). I have to say I was never sick a single day while taking it. I was tired but that was nothing unusual for me. I’m blessed to say by the end of 6 months, I was cancer free (NED) and have been for 10 years. Prayers to you

Thank you for your reply. How wonderful that you are now cancer free🙏. NED? what does that stand for? And did your hair grow back?

Thank you all for your replies 🙏. Very helpful and informative from” the horses mouth”. I am seeing med onc next week. I am really in a quandry in how to best deal with this for me. I hate feeling unwell!! And at the moment the only physical problem I have is radiation damage to some muscle in the shoulder which doesn’t impact me very much.

NED means No Evidence of Disease. They use this for Stage 4 because the thought is you can’t be cured. Yes, my hair grew back. Actually, prior to chemo, my hair was straight and fine. After chemo, it came back thick and curly!! I loved it! The bad news for me is that my normal blah hair came back two years later. I was really hoping to have my chemo hair forever.

I also have straight fine hair and would love to have some curls in it😄😄. When you say chemo, do you mean the tamoxifen, or did you also have something else?

Can someone share with me their experience with a lumpectomy please? I’m schedule for one next week, having a sentinal node biopsy at the same time. Has anyone had both done together. I’m told I’ll only need Tylenol and Advil for pain after?
I had a colon re-section 3 years ago and followed Mayo Clinic blog for that. I find it so helpful. If I can help anyone with that experience , just ask.
I’m terrified this time. My tumour is 1.6 cm not sure the stage. The biopsy said stage 2 but I know they really need to look at the actual tumour once it’s out