Shock, denial, confused... pls help!!

This is really the toughest time for most of us. The diagnosis to the treatment strategy. Feel free to be scared, worried and depressed, we all have been there. Before you make any decisions you should see a PS or 2 and discuss your recon options. You should also talk to a radiation oncologists since you most likely will have rads if you have a lumpectomy instead of a mastectomy. You should insist on the BRACA gene test because it will help with your treatment decision making. The Docs just give you options and recommendations now instead of telling you what to do. Your treatment is a personal decision based on a lot of variables one of which is your pathology report from your biopsy. Have you BS or Oncologist explain to you exactly what your pathology report is and get a copy of it. Please take someone with you who can listen and take notes at your appointments. Your are in a fog right now and everything is new and strange. There are a lot of us veterans on this site and some of us have been living with BC for many many years. You have to remember that you can do this as there are thousands of us doing this everyday. It's OK to be worried and scared and it's ok for your loved ones to be scared also. Stay on this site and you will find other women who will help and support you along the way. Wishing you the best! I had my second surgery in NYC so you can PM me if you would like to know who I used for a BS and PS in NY. I had a BMX/DIEP after a recurrence 4 yrs after my original DX.

Whether a lumpectomy is disfiguring depends on how much they need to take out vs how large your breasts are to begin with. Sometimes you can't even tell tissue was removed They can also do a reduction on the larger side to make them match better. A lumpectomy may require a 're-excision' if the pathology report after surgery comes back saying that the margins aren't adequate; sometimes called 'dirty margins'. In other words, there needs to be a certain amount of healthy tissue completely surrounding the cancer. If not, they may have missed some cancer cells, which could result in it coming back. They do the best they can, but pathology may find something on a microscopic level that the surgeon couldn't see, so they have to go back in and take more tissue and then wait for the final pathology report.

How many lymph nodes they need to take can depend on how many they think are involved. I'm not sure whether you are saying the biopsy showed spread to the lymph nodes, or whether you have lymphatic vascular invasion. This link leads to an article explaining your pathology report (the difference between positive nodes and lymphatic invasion is on page 9.

http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

More information on lymph node involvement:

http://www.breastcancer.org/symptoms/diagnosis/lymph_nodes.jsp

and info on vascular or lymphatic system invasion:

http://www.breastcancer.org/symptoms/diagnosis/vasc_lymph_inv.jsp

can help you understand why the surgeon might want to take more or fewer lymph nodes.

Good luck. I channeled my nerves into finding out as much info as I could. It took a little while before things started clicking into place, but information is power, so go get it! (((hugs))) Come here to vent or ask questions any time.

The other gals have given you some good information - my concern is your family trying to rush you through this process.  That has placed quite a bit of undo stress on you to make a decision and for sure is contributing to the overwhelming sensation you feel.

Do get a oncologist - your treatment plan should be coordinated through the oncologist.  You will need the breast surgeon and the plastic surgeon and should have everyone working as a team.  Slow down and breathe - give yourself the space to think.  This site contains lots of great information - if you go to the home page, look up the things you are looking for answers for and keep following the links to get a full understanding of the topic.  Start a notebook and begin to write everything down and be sure to include all the questions you may have so you don't forget to ask the doctors. 

There is a forum for DCIS diagnosis - put a post up on there and you should get some very good information from ladies that have the same diagnosis as you. 

I wish you the best and do let us know how things turn out for you - and please, don't rush - make informed decisions and that takes time.  You will experience a lot of waiting for results - and there is no rushing that...

It is very rare to get a hernia from a DIEP performed by a highly skilled microsurgeon. If you plan on going the DIEP route talk to the best flap surgeons in NYC first. diepflap.com will give you info on 3 of the best in that surgery area. Some less skilled docs will say they are doing a DIEP but then switch during surgery to a muscle sparing free TRAM which uses a small piece of muscle. That technique has a slightly higher incidence of a hernia but it is the true TRAM FLAP procedure which can be performed by most all PS that has the highest incidence of hernia. Go to the thread DIEP 2011 for lots of info on women that have had DIEP and Free TRAM. Please speak with several PS before making your decision for recon. If you are going to have rads then you might not want immediate recon because it could compromise the results. Wishing you the best as you navigate all this info and start to formulate your plan.

I am sorry for your diagnosis...We all know how that feels and how shocking and numbing and overwhelming it is.  I has a lumpectomy and rads in 2008, and just experienced a delayed and ultimately failed reconstruction this past spring/summer/fall.  TEs placed March 2011, expanded all summer with complications and much pain, then implants put in Sept. 2001, developed infection again and had them removed Oct. 2011.  According the my ps, it was the radiation that proved to be the reason for the failure. It was traumatic and forced me to reevaluate my decision back in 2008. If you are considering reconstruction, I urge you to get as many consults as you can.  Good luck and know you are doing all the right things in asking questions and getting answers.  

I don't have answers to all your questions. Yes, moderately differentiated sounds like grade 2 (on a scale of 1-3). I had hormone negative (mostly) cancer, so my docs have treated me like a triple negative, with the added insurance of hormonal therapy for 5 years like a heavily ER+ woman. I opted for a bilat MX, but had radiation anyway. They recommended waiting at least 18 mos post-radiation before reconstruction to let my skin heal. I've since decided I'm perfectly happy without doing reconstruction. I've got 'falsies' to wear when I want and love the freedom of just throwing on a tank top or camisole and going. I do look for tops with more detailing, lace or ruffles than I did before. It seems to announce "woman!" and most people don't even realize there aren't any boobs!

As for rads, it can cause lung fibrosis (stiffening) in rare cases, but that didn't happen to me. It can also rarely cause heart damage (also nope) and may cause the ribs and muscles that were zapped to be more brittle/stiffened and if you've already had reconstruction, that boob may shrink some. It just feels different on that side and it was sore to sleep on that side for several months afterward for me. I don't regret having rads, though. My cancer was very aggressive and I wanted to throw everything I could at it. But your decision must be yours.

HardtimeNY-

Reading your post I can really identify. Our situations sound similar. I went through it 7 years ago and have learned ALOT. I was treated at Columbia Pres in NYC. It is the most shocking thing and I am still shocked I have to say. There is so much to tell and it is smart to go on the boards. I learned so much here. Feel free to message me any specific questions about NY. I got implants and am having them removed after 7 years. Sending you best wishes. P.S. Tell them you want an antiemetic (no nausea med) in the drip (not oral) during surgery. If you are prone to nausea when that put you under. My surgery was 8 hours and it took me 3 days to stop feeling nausea. Just a tip...ask around...ask for tips in general. It will save you much unecessary side effects etc...

Jessica 

HardTimeNY, I'm one of the December surgery sisters for the second year in a row. It's hard having it over the holidays. Last year my family was still reeling from my youngest uncle's death from esophageal cancer and this year several of my parents' older siblings and in-laws with cancer, dementia etc. Neither of my parents is in great health, especially emotionally, and now me with this.

You do NOT have to have reconstruction immediately. You can take your time deciding. A mastectomy without reconstruction is often same-day surgery. You would have drains for a couple of weeks and it's a nuisance but the fear, confusion, and all that you feel now are far worse than the pain after this surgery for most of us. If you do mx no recon, you would likely not be in a hospital bed longer than a few hours. I was typing on my computer before dinner the same day, and with working at home, I did not miss an hour of work (I should have, but I didn't). 

I had a home care nurse who came every day for about half an hour until my drain was out and she dealt with the dressings and removed the drain. It's comforting to have someone in your house to help and bring you tea etc. but some people do manage mostly on their own. My husband went to work most days when I was recovering. Setting up a few dishes and food ingredients at counter height to avoid reaching made it manageable. I went to the hairdresser to have my hair washed when I couldn't comfortably reach my head to do it. That was nice. I was able to go out for a walk and have a sandwich or whatever within days.

With lumpectomy, that was nothing. I was shocked at how fast I felt better again, and guilty to even be working at home. I felt that I could have been in the office. Once the pathology report came back, they said my lumpectomy margins were inadequate. I delayed between biopsy and lumpectomy (they told me there was no rush and I had things to do.) So then I had the choice of mastectomy or re-excision (make bigger) the lumpectomy. I just wanted to get rid of the breasts and reduce my risk. I did not want chemo or rads, which with only DCIS I would not need, but if I waited for a recurrence and it was worse, then I might need.

I only had one mastectomy last year (wanted both) and now this year am having the other with DIEP. I chose DIEP because (a) I have access to a top microsurgical flap surgeon, (b) I have allergies to lots of things and did not want to risk foreign objects in my body, (c) I want to continue to run, and TRAM flap can reduce abdominal strength, and (d) despite all attempts at healthy eating and exercise, I still have my "baby weight" that apparently Mother Nature has been saving for 16 years for just this reason, and (e) a little bit of curve makes clothes hang nicer. The first PS I consulted said I was the exact description of a DIEP candidate, and she referred me to one who could do bilateral. If I did not have (a) the excellent surgeon, I would be happy to be flat or use a smaller prosthesis. My breasts had a good run, but they are not that important to me now. 

I think you are onto something with guided imagery. Many people recommend it for stress. I visualize pleasant experiences as I am going under anaesthesia or doing unpleasant things like biopsies (going on a roller coaster, for me).  Other people recommend talking to doctors about anxiety medications. I was so stressed over the decisions and delays that I was destroying my molars. Medication helped with that.

Know that you are stronger than you realize, and that everyone here understands what you feel and your feelings are valid. Trust your instincts. Read different posts on BCO especially of people with similar medical characteristics and see whose feelings and values seem most like yours and who was happiest with their choices. You will find a way. Good luck!

I constantly used Naperstek's CD's to get through surgery and to stay calm. I had days where I made it by listening to her several times...the post above me tells you where to buy them. Successful Surgery is fantastic...I would have been lost without these CD's....