New invasive on mastectomy side.

[Nursewithcancer]

I am new to this site and to metastatic breast cancer. I had a mastectomy 12 years ago for Dcis. Unfortunately I have now fallen into the less than 2% of people who get a cancer from the less than 5% of breast tissue left behind. I found fullness and a mass in the arm pit. Anyone else have this experience? I was diagnosed with diffuse bone Mets and started ibrance letrazole and zometa this week. Thank you for listening

[Wintervt]

Dear NursewithCancer,

I am so sorry to hear this! Welcome, you will find a wonderful group of supportive women on this site.

I was diagnosed with DCIS in November of 2015. I had a lumpectomy and radiation and then deemed cancer free. In March of 2018 I was diagnosed with bone mets. To say I was stunned is an understatement. My treatment plan consists of Letrozole/Ibrance, and a monthly injection of Lupron and Xgeva. I had a bone scan last month, my bone lesions are shrinking and my tumor markers have trended down considerably.

Sending ❤️

[mariootsi]

Welcome! You have found a wonderful site with remarkable women willing to support and share! Marianne

[Nursewithcancer]

Wow. Isn’t it crazy? Did you have a new invasive primary ? Everyone down plays Dcis. Even my gyn has recently made a comment that Dcis is no big deal. I have now had every scan you can think of except brain mri. Started having headaches and nausea. I’m having a brain mri tomorrow. Praying that it’s negative.

[Wintervt in reply to Nursewithcancer]

No, I did not have a new invasive primary, just bone mets. I honestly think I had them when I was diagnosed with DCIS, as they are so extensive. I agree DCIS is totally downplayed. When I received my initial diagnosis I was told that I was lucky and it was not considered real cancer. I also suffered from headaches, dizziness, tremors and nausea. I had an MRI and it was completely clear. A month after I started treatment I no longer suffer from those symptoms.

Sending love, light and prayers that your MRI is clear as well!

xo Jade

[Onie54]

Good luck with your scan tomorrow!

[TNVol]

Welcome! You've found a group with much information and incredible support and encouragement. Hope you adjust well to Ibrance and the other meds. Please keep us informed of your progress.

[Selmac]

I was diagnosed with Dcis in 2013. Double mastectomy and chemo. I was on Famara. In 2017 I was stage 4. Cancer in ribs, spine, shoulders and front of hip bones. Started Ibrance and Faslodex. 6 months later it spread. I have now been on Afinitor and Aromisin for a year. Last pet scan was July. No progression. Due for a ct scan but not sure when I'll get it. I was having headaches and had a brain scan last month. All clear with the brain scan. Good luck and prayers to you and all of us with cancer.

[Burgerde in reply to Selmac]

Good morning Selmac. You are one of the few people on the site who I have seen that seem to be on Afinitor other than me. I was on Verenzio and Faslodex up until about 6 weeks ago and was switched because it wasn’t working and Foundation One testing identified a receptor which Afinitor might work. This drug is hard! I feel as nauseated and fatigued as after total brain radiation and IV chemo. Have horrible headaches and just feel awful. My WBCs dropped enough it took 3 weeks off meds to come back up. saw oncologist and he said it is the hardest oral agent for side effects. May I ask how you have done with side effects ?

[Selmac in reply to Burgerde]

Burgers, I've done well on these two meds, thank God. I'm on highest dose of both for a year. I've not had a cold or anything. I did stop it for a few days to help a bad sore on my throat. I get sores on my head and a few on my face. Watery eyes and such. I take half of an allergy pill a day which helps. I drink about 60 oz of water a day. No meat or very little and tons of fruit and vegetables. I have no idea if this helps bit it's what I do. I also eat organic. I give in and eat a whole pizza about once a week. Cheese only. I've never been nauseated. In fact my appetite has increased and I've lost weight. Right now about 115 pounds at 5'1". If you have any more questions just ask.

[Selmac in reply to Burgerde]

Sorry about the name. Spell check took over.

[SeattleMom]

Hello!

You’ve joined a very supportive group of wonderful women who, unfortunately, all share your MBC diagnosis.

My experience very similar to yours: BC diagnosis in 2000, Stage 1, no lymph node involvement and no cancer found in any breast tissue. I opted for a double mastectomy despite my seemingly optimistic prognosis. No chemo recommended at time.

But, like you, a very small but hard lump I discovered in my armpit (Nov 2017) proved to be malignant with spread to spine and pelvic bone. My protocol is Ibrance, Letrozole, and an injection of Xgeva every 3 months. I will be having a scan next week which is always the most nerve wracking aspect of this journey. God bless you! And hope and pray that your meds keep this nasty disease at bay for many years to come!! Linda ❤️❤️🙏🏻🙏🏻

[Burgerde]

I can empathize with you ! I had a lumpectomy and breast radiation 12 years ago for DCIS also. I was deemed free of cancer. 8/2017 I was feeling great and had had a clean mammogram in April. I had a routine eye exam and to make a long story short, diagnosed with an eye lesion which turned out to be a cancer metastasis. I was found to not only have an eye met but also multiple brain and liver mets. I also had several skin mets as well as lung and bone mets. It appears still that I have no breast lump. There are people who appear to have years with just a stray cancer cell floating around and then PUF it’s all over your body ! I now am on Faslodex And Afinitor after starting with IV chemo than failing several other regiments. I have decided that I’ll never know what the exact origin of the MBC was and it doesn’t really matter. I just have to keep going I guess ! I wish you the best and that you do well !

[Nursewithcancer in reply to Burgerde]

I’m so sorry to hear this. There really is no rhyme or reason for why these things happen. It’s so scary and frustrating. All we can do is remain hopeful. I have been having headaches and nausea. I am currently sitting in the waiting room waiting for a brain mri. I am so scarred but hoping that it is negative. Thank you for sharing.