Metastatic secondary breast cancer to the skin

[hopefulinadks]

Has any one out there recently developed secondary breast cancer to the skin in the form of painless pea size nodules under the skin? If so, what are the treatment options you are exploring? This is a recent frightening development for me on top of everything else. Any information is greatly appreciated! I am terrified and trying not to become anxious and hopeless.

[LisaT23]

Hi,I was diagnosed 1/2016 with MBC to bone and lymph nodes. Did arimidex with xgeva for almost 2 years, then faslodex with ibrance and xgeva till 6/19. Tried several chemos but either I couldn’t handle them or they didn’t work. In June 2020 some spots showed up in liver and skin nodules. Like you said about the size of a pea and painless. 3 on my back, 1 on stomach,1 on collarbone, 1 on neck, and 3 on scalp.feel kind of hard like a large pimple or bite but they are just there. I am on abraxane with xgeva since July and have had 2 PET scans that show similar or slightly reduced activity. Markers have gone down, so that’s good I guess. They are just something else to watch, as long as they don’t hurt or grow.

Lisa

[hopefulinadks in reply to LisaT23]

Thank you Lisa for responding. I have 4 on back, 1 on stomach, 3 on shoulders, 2 on scalp and additional liver , lung and bone mets. I was diagnosed with bilateral two different breast cancers in October 2018. Stage 1 and Stage 3. Did strong ACT chemo at a local hospital for 3 months (Nov 2018 to January 2019) and then surgery February 2019 at Memorial Sloan Kettering. Mastectomy on right (Stage 3), lumpectomy on left (stage 1) and double axillary lymph node dissection which was not expected. Part of my 5th and 6th ribs were removed during surgery by a Thoracic surgeon after Breast surgeon. Plastic surgeon finished up closure. 10 hour surgery and a week hospitalization in NYC. I then had radiation to both sides of chest for 61/2 weeks and under right arm, I lived at a Hope Lodge in Burlington, VT during the radiation and went home to northern NY on weekends. Finished radiation end of May 2019. I personally think that chemo before surgery allowed it to spread. I just read that research is showing cancer cells change around tumors when you have chemo before surgery and that these cells move and spread. I wish I had had the chemo AFTER the surgery. There was NO cancer in my lymph nodes at initial diagnosis. I didn't know ANYTHING about cancer as none in my family!!!! My prognosis was great. I was supposed to be cured. I was one of the lucky ones so they said. They put me on Arimidex and Prolia in July 2019 . Then devastating Metastatic diagnosis last December 2019 right before Christmas.. I was having ankle pain. Tried keto diet and alternative stuff for a few months because I was turned off to chemo as it did not work for me the first time. Also stereotactic targeted radiation which worked in some areas. I have been on Faslodex since April 2020 and started Ibrance in November 2020. I broke my right femur with a slight fall in September a few months ago (bone mets)so couldn't start Ibrance when I finally gave into it in September. I had to heal more. I am only on my 2nd cycle 75 mg. Not walking yet, also had a tibia rod put in October 2020 to prevent further breaks. Now bone mets in left femur. OH NO! It's been a long road. After surgery these skin nodules showed up. Never catch a break! I think lack of mobility and surgery caused this new development. I started Xgeva last month and have a lot of body aches. I am not familiar with Abraxane. My oncologist wants to go with to Xeloda already without giving Ibrance a chance. Was Xeloda one of your fails.? Gosh, it's so hard to know who to believe as I feel so many mistakes were made by the so called "experts". I pray for guidance. I wish you the best. Let me know if anything works and I will do the same. Let's try to enjoy the holidays anyway. Thanks again for responding as we should know we are not alone in this fight. These little bumps are so disturbing as they seem to pop up almost weekly. Just one more thing to contend with. God Bless and keep you safe. Thanks for taking the time to answer my post. I really appreciate it. Ker

[LisaT23 in reply to hopefulinadks]

Hi,I did exemenstance and affininitor , but blood sugar went over 350 and triglycerides over 1200., and it didn’t even work on cancer. Never had blood sugar issues before. Switched to xeloda and did insulin for 2 months until sugar went back to normal.There was progression so switched to gemzar needed 2 blood transfusions. Ended up in the hospital for 6 days for transfusion reaction, got out March 16 with mass discharge as hospital was made into COVID hospital. My hemoglobin was 7.4 but doc said I was safer at home. Switched to erubilin till end of May. Wound up in hospital for 6 days again with a fever. Put me on vancomycin and cefepim antibiotics, had reactions to both. They never found out what caused the fever but it went away. That’s when a CT found the spots on the liver and skin. I knew the skin ones were there, but they never lit up on any PET scan before then.

I had lost about 1/3 my weight on those chemos, down t below 140 @ 5”9. Since I started the abraxane I can eat and I am now 155. I haven’t needed any nausea meds or blood transfusions, so I think it is easier. Just finished 8th cycle of 3 weeks each. Hoping it lasts awhile longer.

Onc says chemo will work on skin spots also and does not want to stop treatment to remove them. The only one that I would want removed is on collarbone under bra strap, but I haven’t been wearing a bra much so I guess it doesn’t matter.

This whole thing is just taking it all a step at a time.

Lisa

[Adele_Julia]

Hi there ! Yep, I have those. On my same breast originally diagnosed. Driving me nuts as they don't want to remove them since I'm now on iBrance and Faslodex. Here's my brief story:

1) Diagnosed w/ Stage 2 breast cancer 2/2019. Pea sized on my right breast. Had a lumpectomy in March of 2019 and several lymph nodes under my right armpit removed due to "external nodal extensions" of them which means they could have "farted" (for lack of a better medical term) into my blood stream.

2) 4 months of Chemo that ended in July 2019

3) Then full lymph node dissection under my right armpit in August. Healed from that...

4) Followed by 2 solid months of radiation that ended shortly before Thanksgiving 2019.

5) July of 2020, bubbles started appearing at the lumpectomy scar. Looked like tiny boils the size of a pee.

6) August one of them burst. October 2020 had a biopsy. Boom Stage 4. Cells are now swimming around the outside of my lung cavity (not in the lung) and some floating around lymph nodes under my breastplate.

7) Wildly upset about this as now I have 4 on my breast including the open wound from the biopsy. They do not want to surgically remove these as they are indicators of how I'm taking to the iBrance and Faslodex which I started in November. SO I'm one month in.

8) To see these on my right breast is maddening. I would prefer someone just carve the girl off and be done with it. Will be seeing my onc on Friday 12/18 and have another appointment with my breast surgeon on 12/23.

9) Rumor has it that if they remove it now, I'd have to stop taking the iBrance/Faslodex for 6 weeks, have the surgery, heal and start right up again. My doctors are suggesting to let the iBrance/Faslodex do it's "thing" to stay ahead of the game.

Hope this helps but I completely understand the feeling of staring at this "stuff" and having to "wait". Feel free to private message me !. I live in Arizona but knowing that you too have the same appearance of skin level tumors is quite distressing.

Hugs,

Julia

[hopefulinadks in reply to Adele_Julia]

Thanks Julia, I don't really know how to private message on this site. Perhaps you can give me a few pointers on that because I would love to. it seems these things just keep coming. I don't want to even touch myself as I always find another one. It's like looking at the cancer all the time. Maddening is a wonderful word! I am glad that yours are confined to one area at least. We started Ibrance at the same time. My history is written here in response to Lisa. I like the way you organized your history better. It's so much easier to understand! How long will your doctors give Ibrance to work? As I mentioned my Oncologist wants to go the Xeloda route but I feel like I should give Ibrance a chance. I have heard it takes 3 months. They put me on 75mg because of my surgeries in September and October. Starting with the low dose. I have submitted a prayer request for your healing and guidance in your decision making and peace within you. I submitted this prayer to be said for Julia at the Notre Dame Grotto on your behalf. I hope that you do not mind and that this will help you on this journey we face together. Ker

[Adele_Julia in reply to hopefulinadks]

Hello Ker,Wonderful to hear back from you! Ironically, I don't know how to private message from this site. I do on others. Reach me here and stay in touch. I can also be reached at 602.625.9958. Feel free to text or call. And THANK YOU for the Prayers Ker ! I will lift you up as well. I haven't been on Xeloda as I just started my journey on iBrance and Faslodex. Have an appointment with my Oncologist on Friday this week. Blessings ! Julia

[hopefulinadks in reply to Adele_Julia]

Hi Julia, It would be so helpful to hear what your oncologist has to say Friday about the effectiveness of Ibrance/Faslodex towards these little skin aliens. I am still on Ibrance as I feel unwilling to switch so quickly to another drug. I started when you did. I know we are all unique with different cancers but it's good to hear opinions from different doctors, don''t you think? I don't know if you are on Xgeva. I just started it last month and I think it is causing me episodes of severe pain because it's the newest treatment and the first month of Ibrance was a breeze. Good luck to you. I have never been to Arizona. It is one of the states we want to visit if and when I get well enough to travel and Covid goes away. A lot of people from these northern Adirondack mountains move there! Take care and hope the appointment goes well.

[Adele_Julia in reply to hopefulinadks]

I'll definitely report back on Friday. I'm not on Xgeva - possbily because my MTS is not in my bones? Blessings !

[hopefulinadks in reply to Adele_Julia]

Thank you!

[Adele_Julia in reply to hopefulinadks]

Hello there ! I saw my oncologist Friday. It looks like I have a PIK3CA mutation. Again, I just started with Ibrance/Flaslodex a month ago. So the onc is going to keep me on this and told me about Piqway for the future if Ibrance doesn't "do it". I am definitely pursuing CoC. careoncology.com/ These are medications that are treated for different reasons but have been known to be 97% effective attacking cancer. . These medications do not conflict with Ibrance/Faslodex . I'm not leaving my health up to a few doctors .... Yes you are right. I'm a research maniac ! hugs. Julia