Angelina Jolie's Innovative Approach to SNB

Kira, thanks for your post. Honestly, everything about MGH was terrific EXCEPT for the downplaying of LE and also the lack of planning for post op physical therapy. Denial doen't make the problem go away.

I wish that we had a standard of care post-op for mastectomies. It seems like there is so much that goes into preparing for surgery and very little that goes into learning how to adapt to your new body. I have found that with physical therapy, by someone with lymphatic and mastectomy rehab training, I have been able to move forward much more easily

I'm wondering if the difference we have here in Australia to the US is that we get injected with the tracer only before surgery.  That gets massaged in (I think from memory I massaged around 20 minutes or maybe 10?? and it lit up on the scan first time, yay!) then we go into surgery and the blue dye gets injected once we are anaesthetised?  I don't remember the blue dye being injected at all, but know it was done as I was peeing blue for a day or so after.

Perhaps it's the blue dye that's painful - the tracer is in a very fine needle as there's only a very small amount of it.  From the amount of blue dye that went down the loo after the op - I would imagine there was a fair amount of it - and I also seem to remember some blue dye on my skin when I had my first wash.

Do you girls in the US remember whether the needle used was a very, very fine needle or a larger one?

Trish

I think Trish has good point. I don't remember the blue dye injection, just the tracer, so maybe Australia and New Zealand follow same procedures? Re the hookwire, I hated that part! Found it quite painful, and they nicked a vein so I bled quite a bit. Everything went wrong that day; first the bleed, then mammogram broke, then radiology screen broke...I said to radiologist, "next thing will be a big earthquake!" (my city was still recovering from a magnitude 7.1 quake). Guess what? I was about to go into surgery when a magnitude 6.3 quake hit...what a nightmare.....had to flee hospital, our house was destroyed and I was left with hookwire in for the next 30 hours and had to get GP to pull it out! Then had to go through the whole thing again (minus the big earthquake) 3 weeks later. So always remember, when you are worried/nervous about anything, IT COULD ALWAYS BE WORSE!! Haha

Oh my goodness Rowan, that was a terrible experience for you. It's unbelievable that all those things could go wrong in the one day. I am with Sara, you are amaziing!

How dreadful to have to front up and have the wire located again too, and you lost your home. I remember seeing the devastation after the quakes in Christchurch, it was heartbreaking.

I sincerely hope things have gotten beter for you!

When I asked my Surgeon about the SNB, he told me that the tracer happens before the surgery, then the blue dye goes in once you are under the anaesthetic, and he uses a geiger counter type thing to locate the node.

That sounds amazing LilacBlue. Just out of interest, how is the medium injected, is the same as with the other SNB, around the breast and into the nipple?

Was it uncomfortable, painful?

First, a ultrasound to find a vein that is connected to the upper left left arm.  Dr. Sever then injected the microbubbles and  massages where he injected to get the bubbles moving to the lymph nodes.  He then follows the bubbles using the ultrasound, all of us watchng the screen and when they get to the sentinel lymph node, he then has a nurse hold the ultrasound and he takes excision biopsy -- a shard of my left sentinel lymph node.  I found it fascinating and no pain and that said from a woman who does not flinch at needles.  The results come back from the lab in a few days and what it does is put to rest if lymph nodes are involved or not.  If microbubble results are positive, a woman can (try) to be prepared for lymph node removal and further tx can then start to be planned and mapped, in advance and that may have a bearing on recon.  For someone who comes back negative - clear,  like myself, huge weight came off my shoulders.  The UK does not yet recognise this test as the final-final, so within common clinical guidelines and protocols, out comes the sentinel lymph node at surgery and they can see the tiny bit that was taken at the time of the microbubble test, knowing it is in fact the sentinel lymph node .

I was told before going in to see Dr. Sever that he is the pioneer of this ground breaking research/test and Dr.'s come worldwide to learn the technique and he lectures on it quite a bit. 

Dr. Sever also before the microbubble test performed a robust stereotactic breast biopsy (where you lie face down and your breast hangs through a hole in the table and then the table hoisted up) using a VAD,  13 samples were taken.  And the hour before seeing Dr. Sever, I had a MRI and he read those results as well.  I was refered to him for two tumors with the thought I perhaps could have a lumpectomy and he found via the MRI two large areas of DCIS that did not come up in the original diagnosis mammograms.

The Peggy Wood Breast Care Centre at Maidstone Hospital in Kent is very cutting edge -- offering high-quality treatment and not as well known as compared to the Royal Marsden in London -- that is the largest and most famous breast unit in the UK. I sought a second opinion and that is how I was refered to Dr. Sever. 

Thank you for that description LilacBlue, very interesting.

I have a friend who is a BC Radiologist and she sends me all the latest research and links to websites for new data. Interestingly, it is always from Britain.

Alliemaxx, I'm so sorry for all the contortions you've been going through--good grief!

But I can't help wondering if you've seen a lymphedema therapist for the belly swelling. Considering the amount of abdominal surgery you've endured it's entirely possible you're dealing with abdominal lymphedema--definitely can happen after tram flap, and very often goes undiagnosed. The good news on that would be that with therapy you can reduce the swelling and keep it in good control. Definitely worth a try--non-invasive, even!

Let us know what you discover. Be well!
Binney

Dear sarajaneeva, sorry about your path report. Yes, you can surely cope with anything. After the shit we went through with the earthquakes (have had more than 10,000 aftershocks) I really still think that things can always be worse!! Regarding the chemo....remember, you don't have to be brave, you just have to show up. Thinking of you xx

Thank you both very much Rowan and Ariom- I am slowly getting through this pathology report- getting it deciphered bit by bit I think-

My ER/PR were both positive(whatever that means) But my HER-2 IHC was negative(1+) HER-2 FISH was Negative-so anything negative is good, I'm thinking..P53 overexpression: negative and the ki-67 proliferative index: high ( I don't think that is good).

I see Rowan where you had 2 lumpectomys on the right-followed by chemo, and then wound up with a mastectomy- I don't understand this- I see a lot of posts where women have a lumpectomy and then several months later return for a mastectomy-my sugeon did not suggest a mastectomy to me- I am wondering if I should suggest it to him or is that something to be done after the oncologist visit? so confusing- I do agree with you that you can find worse things than just what is ailing you, you don't have to look very far either...

I said I wan't going to worry about what I didn't know what to worry about-now that I know, I guess I can worry, huh? 

Hi again Ladies!

I chose Umx, mainly to avoid rads too. Just my personal choice.

Also, I have mentioned here before that my Husband is a C5/6 Quad in a wheelchair. We live in the country, The Lakes District in Regional Victoria. To do rads, I would have had to leave him 5 days a week to stay in a town some distance away.

A BMX wasn't given as an option for me, but if there was any hint of an issue, I'd remove the other breast, in a heartbeat.

I have absolutely no regrets. The decision was the right one for me, and my family.

Whatever you decide, will be the right decision for you.

Take care, and let us know how you are doing. 

sara

Speak to your surgeon about  a possible mastectomy and your oncologist about chemo and the radiologist about radiation ( phew)

Unfortunately,  while you might avoid RADS you *might* still have to have chemo.  Find out for sure before you make your final decision.

I'm very sorry it was not better news, but hope it all works out well for you.

Take Care!

Hi again sarajaneeva, I am sorry if I gave you the idea that my choice gave me a difinitive answer immediately. I should have said, as long as the final pathology was all clear. I took the gamble that there was no invasion, and that I had pure DCIS.

I was one of the very fortunate ones who had only DCIS, so by removing the whole breast, it was all removed. There wasn't any need to have the Rads. Chemo was never an issue for me, becaue it isn't indicated for DCIS. Had anything else shown up at final pathology that could have changed too.

I would suggest you talk to your team and weigh up all the options, you'll find the right decision for you. Everyone has a different Dx and a different path. 

Thank you for mentioning my Husband, but truly, it is all about what you get used to. He is  very high functioning quad who drives and sails, and still works from home since retiring. We have help for him, which makes it easier on me. I always tell people that if he were on two legs, I'd never keep up with him! That's the truth.

I wish you all the best!

@Patty, Thanks for the response-- I am getting a clearer picture now why some mastectomies(yours anyway) follow lumpectomy- so yes, your post did make sense-I have to keep drumming in my head that we are all individuals and our cases will be individual as well-  I appreciate your post and wish you the best with your treatment-

@KayB, Thank you for the response- it does clear things up a bit more for me. Will the next margin surgery, deliver more infomation? 

The bottom line is we won't know the answers to most of my questions until we get everybody on board and get their opinions-

Your responses have been very helpful, thank you ..Best of luck to you!

Hello sarajaneeva, I understand how your head is spinning right now. The waiting is definitely the worst stress that I have ever felt. We just aren't used to feeling this out of control, and in the beginning, this is all about feeling out of control.

There are options, so when you find that you are a bit more in control, and can make your own decisions, things begin to take on a different feel.

You've got a team working for you now, you'll do fine.

We are here for you, if you need support, or you just want to vent.

Thank you again for your kind words:)

I look forward to chatting agin, Good Luck, and take care!