Mastectomy with or without snb

Alfieval

I have just been told that I have high grade dcis in one duct and susp in the second duct they don't know. I am having simple mastectomy but can't decide if I should have snb with the surgery or wait until tests on breast and get snb afterwards if needed as snb can cause other problems. I have fibromyalgia in shoulders and upper back so exercises after snb will be painful.can anyone help please?

Alfieval

hi Kayb. Thankyou for answering. My surgeon offered me snb with my mastectomy because not sure what is in second duct.but I don't have to have it,my cancer nurse said I can have it after breast removed and tested she must have got it wrong. It is cording and nerve damage that I'm worried about because of exercises after with this fibromyalgia  Alfieval.

farmerlucy

Alfieval - Check out what they did for Angelina Jolie. Seems like the best of both worlds.

OOPS - put in the worng link thie first time.

Here is the right one,

http://pinklotusbreastcenter.com/breast-cancer-101/2013/03/prophylactic-breast-dye-injection-an-innovative-idea-from-the-pink-lotus-breast-center/

Alfieval

hi Kayb  I am only worried about the excercises after snb so I will see my GP and ask what help I can get afterwords,I suppose I will have to have the snb even though I may not need it.Thanks for your good idea and would like to know if you are getting on ok now?  Alfieval

farmerlucy

Kayb - I wonder if they mean the dye injection is prophylactic,  and if after the surgery it was true DCIS and no nodes were initially taken they're good. If something else is found they can go back in and take the node since it appears it will still have the blue dye in it. I wish I was offered that. My BS did a SNB after the fact, and from what I've learned here it could be suspect. Oh well. I'm going with the assumption that it was the right one. Take care. 

Alfieval

Hi farmerlucy  Sorry didn't understand your message,I am having simple mastectomy for one high grade DCIS and one suspect,which procedure?  Alfieval

farmerlucy

The link to Pink Lotus highlights another option for doing a SNB. One that can be done reliably after the fact. No nodes are taken at the mx, but the SNB prep is done and the dye is doing its thing. If pathology finds invasive, the BS can go back in days or even weeks later and take that one node. I may be missing something big here, but common sense tells me this is a good idea for not only prophylactic mastectomies, but could be considered for pure DCIS as well. 

SpecialK

alfieval - the Pink Lotus procedure has you getting the dye/tracer injection done at the time of mastectomy to utilize the breast tissue while it is still intact - and the materials travel to the sentinel node.  The breast tissue is removed, but the SNB is not - if there is no invasive component (the reason for the SNB in the first place in the case of a DCIS diagnosis) then you have no nodes removed.  When the breast tissue is examined in post-operative pathology, if no invasive component is seen the nodes remain intact. If an invasive component is discovered you go back and have the SNB done because the dye/tracer remains for a number of days.  Also just a note - you can develop cording/lymphedema from the breast surgery alone even if your nodes are left undisturbed.  You may want to strongly consider having some therapy regardless to help you with exercise, range of motion, and possible impact from the breast surgery if you are already compromised with movement.

Alfieval

Hi Kayb  What a great idea,I could ask if they can inject dye but not remove nodes unless I get bad report from breast tissue. Wow that answers my question. Thanks a lot  Alfieval

SpecialK

kayb - I think it is a judgement call on the part her BS - some might do it, some might not.  I think it is a potentially usable procedure if the thought is that you  have a pure DCIS dx - some BS don't do SNB at all for DCIS, so others may figure what is the harm in doing a delayed one.  I def don't think any BS would do this procedure in the face of invasive disease.

Alfieval

hi SpecialK. That is the way I will go,it sounds just right. Neither the surgeon or the breast care nurse told me about cording and lymphodema from mastectomy,they should have. I will look into after help.  Thanks. Alfieval

Alfieval

Oh dear I'm back to square one. mastectomy with snb or dye on day and snb later. They are sure of one high grade DCIS but not sure what the other one is. 

Infobabe

I don't understand why they don't know what the other one is.  Did they not biopsy it?  There is a big treatment difference between DCIS and invasive.

Alfieval

hi SpecialK. could you send me that Linc  to Pink lotus procedure, I appear to have lost it. Thanks. Alfieval

Alfieval

hi Infobabe. Yes I had biopsy they said inconclusive, suspect. Surgeon says if I had another biopsy he is 95%sure it would be positive but for what DCIS? I have a long way to go for a biopsy. and Iv had three already I had one in the nipple ouch but that was negative.  Alfieval

Alfieval

Hi SpecialK. Could you please tell me how you know that I could get lymphodema and cording from simple mastectomy.I am worried I wasn't told this by any of my medical?  Thanks  Alfieval

SpecialK

alfieval - your BS would have to be on board with doing a delayed SNB - they may just say that they don't think it would be a good idea because this is a widely accepted practice for prophy MX/BMX, let alone for women diagnosed with any type of cancer - this is something you should discuss with your surgeon.  Here is the link:

http://pinklotusbreastcenter.com/breast-cancer-101/2013/03/prophylactic-breast-dye-injection-an-innovative-idea-from-the-pink-lotus-breast-center/

kayb is right - you would need a speedy pathology report since the duration of the dye staining is variable.  Also important to reiterate - this has been done prophylactically, not routinely on patients with known breast cancer, so your BS may not support it for those who have been diagnosed.

farmerlucy

Everyone brings up really excellent points. Please come back and let us know what your BS says. Also if anyone else reading this had pure DCIS and chose to do a similar procedure or even discussed it with their BS could you please weigh in? 

Thanks everyone.

Just this week I learned new things from folks in Canada, Israel, South America, not to mention the US. That is why this site is SO great!

Moderators

Alfieval, We welcome you to the BCO online community. As you can see there is a lot of information and support here for you. You can search our site for additional information about your particular concerns, especially as they relate to fibromyalgia.We would agree with the suggestions of the women posting here that it might make the most sense to consult with a physical therapist who is certified in lymphedema management prior to your surgery. He/she would be the most knowledgeable about your risk for lymphedema, the difference in risk factors for the different procedures and your unique situation of also having a history of fibromyalgia. Good luck and keep us posted. The Mods

Alfieval

Hi specialK   Thanks for help. Strange thing is my surgeon says it's my choice snb at surgery or not. When I talked to breast care nurse she said I can have snb with surgery or after surgery when they have checked breast,they do them together to save patient from two surgeries. So question,how do they do snb after breast has gone. I haven't been told by anyone that I can get lymphodema and cording from SM without snb,concerned could you please give me more info on that please. Just found out That those odd numbers surgeon gave me ment, both ducts have DCIS high grade,but still dcis.

lago

I had a Bilateral. The MRI showed 3 suspicious spots in the "good" breast. We didn't even biopsy it. My BS was worried about one of those spots which ended up being LCIS. I did have a sentinel done on that side and 10 nodes removed on the other. If we had know it was LCIS I would not have had the SNB.

But if there is no breast then they will have to take the first level. My other arm that got 10 nodes removed has lymphedema. Granted I had level one removed because of the size of my tumor (usually don't do that now). It's something to consider.

Alfieval

Hi to all my lovely friends. I have been back to talk to my surgeon as I wasn't getting any sleep trying to decide. Have been told if I don't have snb until after the surgery and they find something bad in breast tissue I would have to have more nodes removed because cannot do snb after breast is removed. He said that with having a duct that they are not sure of snb is recommended. I asked him a question that might amuse you. If I was your wife or a loved one,what would you advise her to do? His answer was, the members of his family would decide for themselves, but if they didn't  have snb he would be very cross with them. That was the answer I needed although he gave it to me in a round about way.he smiled at me. So my decision is now made and I can forget about it until 16th June. I am having simple mastectomy with snb.  Thankyou  for all your help,will let you know how things go afterwards. It was good being able to talk to you.  Love. Alfieval

Moderators

Alfieval, We are glad you made your decision . Thanks for letting us know.  Please check back and let us know how your surgery goes.  The  Mods

Alfieval

Hi  Did my last message go through to women on forum,I can't find it.  Alfieval

SpecialK

alfieval - glad you were able to make a decision - having established a plan will help you relax a bit as that is one question answered.  FWIW, if I were in your shoes, I would do the same. I think the terminology and explanation from the nurse may have been confusing also - they can certainly remove nodes after a mastectomy, but it is no longer a SNB, it is node removal.  A SNB (Sentinel Node Biopsy) inherently implies that the dye and/or tracer travel to the "sentinel" or first node away from the breast in the axilla - the one most predictive of a spread to the nodes, and for that to happen you need breast tissue to conduct the test.  If the tissue is removed there is no way for the surgeon to tell if the node is the sentinel or not - they just remove nodes - and generally remove a larger number - which would increase your risk of lymphedema.  SNB was developed to prevent patients from suffering the potentially troublesome side effects of more extensive node dissection.

Alfieval

Hi All my lovely friends  Just came back to let you know what my GP said about about fibromyalgia and exercises for snb. First of all he has added Amitriptyline to my pain meds. Get this!!! He said you can only do what you can do,how about that for an answer from a Doctor,like it doesn't mater if you do exercises or not.

Ariom

Alfieval, I am joining in a bit late on this subject, but I had to make the decision about having a SNB at the time if my simple UMX too.

The wording my Surgeon used was "It would be very remiss of me to not do a SNB at the time of your MX!" he didn't suspect invasion, but he told me, if I had chosen to have a lumpectomy, he would not do a SNB, because he could go back after a lumpectomy to do a SNB, but after a MX the opportunity is gone, so I would have to have an Axillary Clearance.

My Mother had BC in '94, before SNB was available. She had all her nodes removed, as a matter of course. There was no invasion discovered after her MX, but she did have Lymphedema for the rest of her life, so for me, it wasn't a difficult decision.

I should mention that I have Rheumatoid Arthritis, so I was religious in my exercises to prevent me losing any range of motion after my surgery. I did, however, have cording after my surgery, not from the SNB, it was cording down my chest and abdomen. It lasted for several months and then resolved itself, just as I was told it would. 

I wish you all the best for the 16th!