What now?

berries

I just had a left mastectomy and they took 4 sentinel lymph nodes out to biopsy and all 4 came back positive for cancer. I am absolutely devastated. What can I expect next? Do they test for more or do I have to have a dissection? I've moved from stage IIB now to IIIA and am gutted.

I meet with my BS on Friday, so I will know more then, but the nurse, who read me the results, mentioned possibly more surgery or radiation. Anyone have something similar or know what I can expect? *prayers*

Sportymom

Hi vmb,

Sorry to hear of your results. I had a similar situation. I had an smallish tumour that my BS could barely find and clinically my lymph nodes looked very healthy, even after I had a breast MRI. The BS thought I would be at Stage I. After my lumpectomy my tumour was still small (11 mm) but this time had a friend (2 mm) and all four of my sentinel nodes cams back positive. So I had the shock I of my life and literally crumbled. I felt everything in my world come crashing down. My anxiety took off. I was on lorazepam twice daily simply to help me function.

Fast forward a few months. I have had a bone scan and CT-scan and then met with my RO and the MO. Both are great. My MO is very good and went over with my all of my options. I have kids that are still young so I decided upon the most aggressive treatment regimen that I could to increase my chances of long term survival.

Depending on what your preferences are you will probably be offered chemo, radiation, more surgery, and hormonal therapy if you have receptors that would respond to therapy.

I know it seems overwhelming because it is. Nothing about this is easy BUT it is a doable. I am still in the first three cycles of my chemo and have some good and “off” days. Others on this board have provided some excellent advice that I take: keep putting one foot in front of the other. In addition, you don’t have to like it or do well you simply have to show up. In the meantime, the initial shock, grief, rage, fear, distress, anger emotions are all normal and allow yourself to feel them. Get help if you need it. Cry, scream, spit, pillow punch. This is hard to accept. However, it does get better. Do the things you love. Eat the things you love. Be with those you love to be around. Accept help. All of this advice was provided to me and has been helpful. Go to take the Stage III board and see that there are people like us living with this for many years. Sending you hugs and prayers.

berries

Thank you so much for your reply. After you received the 4 positive nodes, what was your next course of action? Was it more surgery to test other nodes or did you get radiation right away? or Chemo right away? I'm just trying to prepare myself at this point.

Did they offer you a full set of scans? I'm terrified beyond belief if I have to go through that with the fear it might be even worse. Ugh.

Sportymom

After the four positive nodes my BS sent me for a bone and CT-scan. It was the scariest time of my life and, like you, I was scared of the worst. I reliably took my lorazepam during that time and cried a lot. It turned out fine which was a relief. Then it was onto the RO and MO. The BS had spoken with another MO who suggested that it would be best to go the chemo route prior to surgery. My actual MO agreed. Hence where I am now. After the chemo should be the surgery for the full axillary node dissection and then the radiation, hormone therapy, zolendronate, and then ovary removal followed by a switch of hormonal therapy

Don’t hesitate to PM me if you would like to chat offline as well. I would have loved someone who was in similar shoes but further along to speak with.

berries

Thank you so much for your reply and I'm so glad to hear you are feeling much better and your scans were clear! I can only hope and pray for the best. I should hopefully rest in the fact that I have no symptoms but that is what I am clinging on...

Do you know why they chose the CEF chemo route vs ACT? I always wondered why they pick one over the other and we have very similar stats except for the size.

KBeee

I'm sorry you are dealing with this. You'll definitely want a care team that works together. Have they done an MRI to see how many nodes they think are suspicious? They may choose to do chemo and then more surgery to check other nodes, or they may do a node dissection. Radiation will most likely be in your future as well. It all seems overwhelming now, but take it one step at a time. You also may want to get another opinion to see how they'd address it since there are options. Did they not do MRI first to identify whether or not they thought there were cancerous nodes present? (though those are not 100% accurate) Your team should also order a PET scan. Lots of decisions in upcoming weeks that can seem overwhelming, but once you have a plan in place, you'll be able to plow forward.

Sportymom

Well that was my choice. The MO went over my 10 year breast cancer specific survival rates starting with doing nothing, adding on only tamoxifen, doing regular chemo (ACT) and doing the most aggressive which was FEC for me. Plus he is doing the ovarian suppression which I started right before chemo and having my ovaries prophylactically removed down the line.

The choice was ultimately mine and I decided to chose the most aggressive treatment available. I believe the other typical third line therapy aside from FEC is the dose dense AC then T but I am not sure if there are others to be honest.