Stage III, TN in internal Mam. Nodes

lwarstler

Hi, My name is Lee Ann, I'm 40 and in the last week and a half, I went from a clinical diagnosis of what they thought was Grade 3, stage 1 and most likely Her2 to finding out it is Grade 3, stage 3 and Triple Neg. The stage 3 is because they just found out on the CT scan that it is "in the internal mammary node to the point it has caused enlargment of the node." My doc wants me to see a medical oncologist now before my lumpectomy surgery scheduled next Thursday, so I am going Tuesday.

When she called she asked if she could get a different oncologist than the one I wanted because he couldn't see me for several weeks and she "thinks something really bad is going on." Of course, at first I completely fell apart but I am calmer today and was just wondering if anyone else who has had something similar could share something of their experience. Thanks

LRM216

You may want to also check out TNBCfoundation.org, and copy this post over there as well.  I belong to that site as well and know that there are gals that are also going through treatment for Internal mammary node involvement as well.  It is a good site for us triple negs as well as this one.

Please know I wish you nothing but complete success.  The beginning is the hardest part.  Once you have a treatment plan in order, it makes a big difference. 

Blessings to you too.

Linda

bak94

Hi Lee Ann,

I have positve internal mammary nodes that were found on an mri and confirmed by biopsy. My docs decided that doing chemo first was the best option, since these nodes can't be romoved by surgery. I will have surgery after chemo and then rads after surgery. My most recent ct scan showed 90% shrinkage of im nodes and no activity shown on pet scan, and I still have 8 abraxane left to do before surgery. Have you also had a pet scan? You might be advised to do chemo first, plus a biopsy of the node to confirm cancer. The biopsy was an ultrasound guided biopsy for me and was no big deal. Sorry you are going through all of this, if you have any more questions please feel free to ask. Hugs to you.

lwarstler

Linda:  Thank you so much and I am really looking forward to getting to a treatment plan. Hopefully we will get one on Tuesday. I will also check out the TNBCfoundation website. Its just good to hear about others who have walked before you.

bak94: Thank you so much for sharing your story. My surgeon/breast care specialist was really upset by the internal mammary node involvement and went from being really upbeat and confident we got this early, etc...to really seeming much more panicked and in a way bigger hurry to get me to the medical oncologist. Your post helped me calm down because I understand now why she wanted me to see the oncologist before our scheduled lumpectomy. 90% shrinkage is also really encouraging. I could feel my muscles relaxing as I read. Having to wait from Friday to Tuesday to find out why your doctor is panicking is a long wait! At least I have a little understanding. If the nodes ar not operable, I can understand her sudden increased concern and desire to wait on the surgery til after we see the oncologist. It will be easier not to go to those darker places in my mind as much until I get there. I have more curiosity now than fear. Thanks

bak94

My thoughts go out to you, it is so tough to wait. My initial tumor was somewhat small and everything seemed to be a bit more positive until they saw something in the im nodes on the breast mri after my mammo and biopsy. There are others that had positive im nodes that are doing fine, so that is what I have been concentrating on. I will also do radiation to the nodes. You seem very calm, and it really does help once you have a treatment plan in place.

amidala

bak94,

 I have a question.  I had a bilateral mastectomy and they found my 1 positive intramammary node when they were doing the pathology following my surgery.  It had been removed with my breast during my mastectomy.  Did you doctor tell you they can't be removed?  The positive IM node didnt' show up on my mammogram but was noticed in the pathology report following my surgery. 

bak94

I think there is a difference between intramammary node and internal mammary node. The Internal mamary nodes are under the breast muscle, kinda between the ribs, the intramammary nodes can be in the breast. I could be wrong, but this is how I understand it. Also, if they do take a bit of muscle with the mastectomy, it is possible to get an internal mammary node, I have heard of this before. I am going to ask my surgeon again that if he can reach the internal mammary node without too much damage if he will try. I also think it depends on each persons individual anatomy. I will ask my surgeon again, maybe even get another opinion to make sure.

lwarstler

Sorry, it took so long. Just an update on operating on the internal mammary nodes. After talking with my oncologist he had decided on neo-adjuvent chemo, and we were set to go. However my surgeion expressed that she felt she could get the internal nodes (2) before chemo..while enlarged...but was concerned about if they shrunk. Since it would only put off chemo about 4-5 days, we decided to go for it. What she told me about the internal nodes is that they are under the breastplate and between or behind the ribs. I had to get a mapping CT scan to mark off the top, bottom and middle of the nodes just prior to surgery and she almost had to give up (it did take an extra hour and a half) but she was able to finally get them. What she told me was that it is really hard to find and get to them without causing a lot of damage and that is why they are often inoperable. However, sometimes, if they are large enough to find, she has pretty good success. I think what could be acceptable damage could vary per the surgeon and patient as well. I could tell she was really disappointed with the fact that she had to really pull and cut on a lot of the skin and muscle (she kept making a face and talking about it) and that it bothered her how it went,  but it was still worth it to me.

I should point out that in my case, several tests have come back quircky and my onc really wanted more tissue to test, so it was this fact coupled with the ability to get the nodes, that changed the decision about neo-adjuvent therapy. If it hadn't been for the concern that a good response to chemo could leave either no more tumor or one too small to test, I'm not sure if just the node would have been worth it to my onc to do adjuvent reather than neo-adjuvent chemo.

I hope you both get or got good, satisfactory answers to your questions from your docs. I am learning more and more how incredibly individuallized each diagnosis and response to treatment is.  

bak94

Thank you for the update. I had 2 surgical opinions and both said not to operate, I have another appointment in a couple of weeks with the surgeon I chose. Like you said, each case is different and I did get a biopsy done confirming breast cancer. I am glad you had a successful surgery for your nodes! My nodes are said to be "resoved" by a pet scan, so it is probably true that the surgeon would now unlikely to find the affected nodes. So did you have your breast operated on already also? What chemo are you going to be doing? Would love to keep talking to you!

lwarstler

Yes, I had the breast operated on last Thursday and she did a lumpectomy with breast reduction. It is almost half in size, but I am not complaining because they were way too heavy to begin with. My oncologist told me before the surgery that the surgeon said I could start chemo in 7-10 days and that he would want me to start ASAP. I am expecting him to call the beginning of this week and he has the chemo port and heart tests being done Wednesday. Based on that I am expecting chemo to start some time between this Thursday and next Tuesday. I am having dose dense ACT (adriamycin, cyclophosphamide and taxol). He is starting with ac every 2 weeks for eight weeks.

I'd love to keep in touch too, so I'll send a PM also. I'm glad you got the second opinion, how are you feeling about them not operating?