If you are not Stage IV but have questions, you may post here

Jen- didthey say anything about the hernia being related to the flap surgery? Just curious. I had an abdominal hernia repair in 2013. It was simple, so if that's what you need, I hope it's as easy as it can be. I'm planning to have DIEP flap early this summer...

Some details and terminology may not be exact but I'll do the best I can. My mom has been fighting breast cancer for 7 years, she was diagnosed in 2010 when she was 51 years old. She has one of the worst breast cancers you can be diagnosed with, called Triple Negative Breast Cancer. It has come back every 18-24 months since then, I won't go into every time and what happened because it would be the length of a book. I always felt like this cancer thing was going to be something that would flare up, and she'd fight it and that would be that, nothing would really happen. Through all these years, there's been ups and downs and up and downs. We were always told that the cancer was in her lymph-nodes, as long as it wasn't in a major organ, that was a good thing, scan after scan and it never was in a major organ- more cancerous lymph-nodes would pop up and some would even go away, we knew things were getting more serious because there was only one medication left for her to use to treat her cancer. That was scary but through it all, mom continued to be positive. Last summer, she started getting a lot of swelling in her leg, they couldn't figure out why, doctors appointment after doctors appointment, it was assumed it was from the immunotherapy treatment she was on - through the fall it continued and then it was both legs, then she started physical therapy. At Christmas things were great, mom was a little tired and the swelling was bothering her, but her and I cooked and she gave the kids all of their gifts. And then the week between Christmas and New Years is when everything started happening. My mom called me and had said her dad and I were on their way to a regular routine appointment with her oncologist, no worries, nothing to be concerned about, just a check up. The day before a check up my mom gets blood work. She called me a few hours later and said her kidney functions were off, they thought maybe dehydration, so they sent her to the hospital to fluids, after another blood test, something was still not right, they did a few more tests and discovered cancerous lymph nodes in her kidneys that were causing a blockage. They scheduled surgery right away to put stints in her kidneys. We were nervous about surgery but also positive because this meant that the swelling would go away-finally, they figured out what was causing the swelling in her legs. She had surgery. Afterwards the pain was awful. I have never seen my mom or anyone in so much pain. We thought it HAS to be from the surgery, it has to be, she wasn't having this pain before surgery! But whenever the doctors would come in, they would slightly shake their heads at the pain being from surgery, just enough to cause us concern that maybe it wasn't from surgery, maybe something else was going on. They wanted to do a special test in her back that would take a couple hours, we were told the cancer was in her back but just to pray it wasn't in her brain. Just pray, so we did, we kept praying. They never got to the scan of her brain because the scan of the back showed that the cancer was in her spine and not just in one spot, and that's when they told us that they can manage her pain but there's nothing they can do. Since that day, our lives will never ever be the same again. My mom is now home, hospice comes twice a week and we are caring for her and spending as much time with her as we can. They gave her 4-6 weeks and I I'm really confused. She looks great, she's walking, talking, I mean, she has a morphine pump but should we be getting a 2nd opinion? I'm so confused, she's only 58, she looks great, I just can't imagine 4-6 weeks. Is she just going to not wake up one day?

yes, you are correct, it's in her spinal fluid. I didn't know the difference between spine and spinal fluid when I wrote this, my brother was telling me last night that there's a big difference. Thank you for your response.

Hi All,

I appreciate the support that I have received in these forums. My mom has since allowed me access to her medical records and I have found the following:

Diagnosis:

Peritoneal Carcinoma, ER-, PR-, possibly HER+ that is consistent with her original breast cancer diagnosis in 2005.

I have not seen the HER + confirmation report yet, but I spoke with the doctor that treated her in 2005 and he said that the treatment would be Herceptin (if HER+) , Cytoxin, and Adriamycin. Her pathology report states "Separate Report to Follow" under HER2 status.

A few questions and comments:

* My first plan of action is that I will inquire regarding when the FISH test or the Inform HER2 Dual ISH test to confirm the HER+ diagnosis to ensure that the Herceptin will work.

*Does anyone have experience for treating this using the Herceptin (if HER+) , Cytoxin, and Adriamycin?

*Naive question- Since the peritoneum is essentially a lining of the stomach area and not a vital organ, why does this show as a poor prognosis? Why is it so hard to treat?

* Is a combination of cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (HIPEC) an option for treatment?

Thanks all!

TMs are accurate for some people, and not accurate for others. In your case, you could consider this test an an early warning system. It will not say whether or not there is cancer again, but higher TMs would alert your onc that a scan should be done. Oncs will tell you that finding mets earlier does not mean longer overall survival, so that is the argument for avoiding the anxiety of TMs, and not doing TMs or scans without symptoms. On the other hand, finding a recurrence earlier may mean better quality of life; for example, getting treatment before a bone break appears, or being able to use hormone therapy instead of chemo as the first line therapy.

Being high or low risk is only about statistics, not about individuals. Your onc is being careful because of your stage; it does not necessarily mean she thinks you will recur. Talk to her about the TMs some more, until you feel more comfortable with the decision.

What is the treatment for bone mets. Does arimidex work. Thank you for any insigh

Thank you Chrissy

Please get a second opinion from a major cancer center before you consent to surgery, Goincrzy8.

I just read a message in a breast cancer support group I'm in. I think it can go into the don't say this. A woman is very worried because she's stage IV & was told she only had a few months left, I don't know what treatments or any she's on. She has school age children so was worried about them etc. This lady, answered that her mother died of breast cancer leaving 4 children & it was devastating for them. I think that's not very nice. She's already worried about telling her kids, the last thing she needs to be reminded about is how devastated they'll be. She knows & doesn't need anyone to repeat it. So just be kind. Let your friend know she can honestly tell you her feelings. Don't push anything. Everyone needs something different. Some want to vent & talk where as some just need company.

Scared, I'm just the opposite, I hunted around till I found an MO that did TM's. I always have aches and pains and when I had the TM's 6 months ago and they were normal it brought me tremendous peace of mind. I'd like to know about mets earlier rather than later but we're all different. I think the TM thing should be up to the patient. Good luck with yours and try to relax, easier said than done I know.

Thanks Genny...good luck to you as well!