Recurrence confirmed- need help!!
 

One month after my last herceptin, my breast cancer came back in the same breast. It started with red blotch that got worse in 4 weeks and a tiny lump right underneath skin. Next week I will have a pet scan to be restaged

My questions are

1. Is skin mets on the same breast considered local recurrence or does that bring me to stage 4
2. My skin blotch is the size of a dime. If no cancer found anywhere else, what kind of treatment is usually prescribed? Surgery to remove the skin? And/or more chemo? Sine I just finished radiation 6 months ago, I doubt this will be my treatment.
3. Is local recurrence of this type treated with the big chemo taxotere and carboplatin, or only the targeted therapy drug like herceptin or tykerb? Since my recurrence happened while I was on herceptin, is it still worth using this drug? I have seen people using herceptin to get Ned for recurrence.

I am hoping there is no distant mets. Hats off to my surgeon who insisted on a biopsy despite a negative ultrasound result! I feel better that I took matter in my hands but can't help feeling frustrated and scared as it came back so fast. I wonder how much longer will I be around? Will I get to see my 5 year old grow up?

Thanks for listening!

Re: Recurrence confirmed- need help!!
 

Oh Yanyan, I'm so sorry this is happening to you! You have already been through so much! Which has shown just how strong you can be. I wish I had some answers for you. We both know before long you will have the answers soon from all the strongest survivors here! Many thanks to this site with all the great knowledge here, there is an arsenal of treatments you can throw at this awful cancer and beat it! Please know you are in my prayers.

Gods blessings to you and your family.

Re: Recurrence confirmed- need help!!
 

Hi. I'm sorry to hear this news. Maybe my experience will help you. I developed skin mets on the cancer breast while on herceptin and taxol, during neoadjuvant treatment. At the time, I had no mets anywhere else, so I went from Stage 3 to Stage 3C. My skin mets also appeared as a "blotch" that showed up at the end of hereptin and taxol. My oncologist decided to proceed with epirubicin and cytoxan. This was when there was the shortage of adriamycin. She was very aggressive with it - dosing me every 2 weeks, instead of every 3. By the time I was done the blotch had faded and shrunk and looked more like a scar. I then went to surgery to have a double mastectomy without reconstruction. The pathology showed no cancer in the breast or in the skin. I then finished up my year of herceptin and had a pet scan when I was done, which showed the liver mets. Since I am BRCA2+, and epirubicin and cytoxan are DNA-destroying chemos, and they worked so well on the cancer in/on my breast, my oncologist believes that the her2 doesn't drive my cancer as much as the gene does. However, this doesn't really explain why the cancer is now in my liver. I'm now on a parp trial at UPenn, receiving veliparib/placebo (don't know which), plus taxol and carboplatin. Veliparib is for BRCA1 or BRCA2 and prevents the cancer cells from repairing themselves. Carboplatin is another DNA-destroying chemo. Our prayer is that, even if I'm receiving the placebo, the carboplatin will destroy the cancer. We're hopeful since the liver discomfort has decreased after just one treatment-praise the Lord!

Hats off to your surgeon AND to you. Being our own advocates increases our survival. I pray there are no distant mets - when will you have a Pet/CT? You will definitely be around for a good, long time. There are so many treatments available. There are women who have been battling her2 cancer for years. I'm sure they'll be along soon to give you encouragement. They are a great source of comfort!

Please keep us posted on you!

Re: Recurrence confirmed- need help!!
 

Thanks Penny! I hope your doctor will find the right treatment for you! i am surprised to learn so many had skin involment. I don't carry the gene and already had a mastectomy. Did you have reconstruction done? So this wil not be an option for me. Some of us unfortunately go to stage 4 so soon for all the surgeries we have had. Sometimes I wonder is it better to be stage 4 off start than have one year Ned without breasts? I know I wanted a mastectomy anyway. I would so relate my recurrence with a lumpectomy!

If I look at it in a positive way. The recurrence gives me a chance to find a more effective treatment regime. I still have doubts about my oncologist decision not to change or add drug when there were 10 positive nodes after 4 TCHs . He said too many chemos are not good for me . I didn't insist on getting a second opinion which is my own fault. It is so important to be your own advocate!

I read on breastcancer.org that some are given xleloda and tykerb. Some are
Given the big chemo drug. I don't know if my surgeon wants to remove the affected skin only. I will need to get my expanders removed or drained since there won't be enough skin to cover the expanders. Next week will be a busy week for me. I have been taking supplement and herbs to prevent recurrence it still came so fast!

Re: Recurrence confirmed- need help!!
 

If the cancer has not spread distantly which your scans will show, you will not be restaged to Stage 4 as this will be considered a local recurrence. However, they may give you some more chemo just to be sure after surgery. They will remove more tissue and the small lump. Stay strong and we are all here for you.

Re: Recurrence confirmed- need help!!
 

Thanks Becky! I guess if I am stage 4 no major surgeries for me. I am keeping my fingers crossed!

Re: Recurrence confirmed- need help!!
 

I have had 2 major surgeries since becoming stage 4. One to remove skin mets, worked for a while but 2 small spots back now. Also had 4 rods inserted in my back due to collapsing spine. I was told my best case scenario was a wheelchair but the surgery went fine and I am fully mobile again. i think surgery depends on your physical condition. hope things go well for you.

Re: Recurrence confirmed- need help!!
 

I did not have reconstruction as they weren't sure what they'd find in the skin and wanted to take as much of it as possible. I could eventually down the road if I ever get to NED but not sure if I'd want it at this point.

Keep up the positive attitude and keep us informed!

Re: Recurrence confirmed- need help!!
 

What type of imaging will be done? Considering renewed activity in the originally diagnosed breast, you might ask about both a mammo and MRI on both breasts and a PET/CT for body. Possibly an MRI for brain. This would seem to give about as complete a picture as possible to inform your next steps.

A blotch might not be enough but if cancerous tissue is going to be removed and you pre-arrange things properly, you could investigate chemosensitivity testing that might better inform chemo choice.

Regarding Herceptin. Ongoing research seems to suggest benefit of continuation beyond progression. i.e. may not be your silver bullet..but more a thorn in the cancer's side.

Re: Recurrence confirmed- need help!!
 

Thanks Rich! I am going to have a PET scan. I have never been prescribed an MRI. Does my oncologist order chemo sensitivity test or my surgeon? Since I already had a mastectomy not sure how much tissue left to be removed

Re: Recurrence confirmed- need help!!
 

Both would hopefully be involved..ideally coordinated by onc..would likely help pick from "menu" of chemos to test.