Advice Please

fluffykazzie

I am writing on behalf of my sister, she is aged 45 yrs, she was diagnosed by chance on the 8th April with DCIS, it is in two places on the same breast,no lump, so the surgeon has advised a full mastectomy and it is scheduled for next tues 26th, she is frightened to death and does not want to go through with the surgery, I asked the suregeon about a lumpectomy and she said that she would strongly advise against it, my sister has Comedo necrosis, we do not know about margins etc or anything else, the surgeon aims to take the lymph nodes during the mastectomy and do a reconstruction using silicon/saline implants at the same time. It is does seem to be very quick and of course she has not got her thoughts in order, could any of you ladies please give any advice, I am so worried for her but of course we know that she has to do something she doesn't want to live under the worry of it becoming invasive in the future and of course we never know when and if it will happen, please help if possible, thanks.

Jelson

fluffykazzie

A benefit - if you can wrap your head around there being a benefit, of the diagnosis of DCIS is that it gives us more time than higher stage bc diagnoses to make the decisions which are right for us. If you and/or your sister are not comfortable with the speed with which decisions are being made and surgery planned, then perhaps  second opinions from a different breast surgeon and pathologist are in order. It is not clear from your post whether your sister is getting a single or bilateral mastectomy. Usually, with DCIS, during a single mastectomy only one - sentinal node is removed. 

Your lucky that your sister has you with whom to share her very legitimate concerns. She should be comfortable with the plan. The second opinions may confirm that of the original doctor - and might give your sister the reassurance she needs to proceed - or they might provide other options. 

Julie E

 

J9W

I agree with Julie, if it's moving too fast, slow the train down. DCIS allows us time to think things through. If you aren't comfortable with the doctors, find new ones.  The first surgeon I went to called me the wrong name the whole time I met with him - even after I pointed that out to him!  I left there, cried my eyes out, and found a different doctor.  Cyber hugs to you and your sister.

sweatyspice

When doctors talk about this, they consider the breast as if it were divided into quarters, like a clock face.  If the areas of DCIS are in different quarters (quadrants) it's called multicentric.  If the areas are close to each other, in the same quadrant, it's called multifocal.  Sometimes they even mix up the terms and use them improperly.

For multicentric disease the standard of care is mastectomy.  For multifocal disease, it may be a bit more of a grey area.

That said, if your sister has multicentric disease and just cannot handle the idea of mastectomy, it MAY be possible to find a surgeon willing to try two lumpectomies. A lot if it depends on the exact location and size of the areas of DCIS, and only a breast specialist with a lot of experience will be likely to consider going against the grain. 

I agree with the other ladies that the first thing to do is slow down and get some other opinions. 

I'm also concerned because from what you describe, it seems that the breast surgeon is also doing the plastic surgery.  That seems odd to me, I've never heard of the same person doing both.  Usually a breast surgeon and a plastic surgeon work together, with the plastic surgeon taking over to do the reconstruction after the breast surgeon completes the mastectomy. 

If mastectomy is indeed her only choice, she has several reconstruction options, she doesn't necessarily have to do implants.  Another reason to slow down and talk to more doctors, including plastic surgeons.

I had multicentric disease and thought I'd be having a mastectomy for a while.  I ended up, after a LOT of pushback and consults and aggravation, having a bilateral lift and reduction.  This was only possible because my cancerous areas happened to be located in a certain way - but it took a lot of searching to find the right doctors to do it.  There were several others who were willing to try two lumpectomies, with varying degrees of enthusiasm.  

If you want to talk about the details, feel free to PM me.   

SJW1

Fluffykazzie,

If your sister is not comfortable with her doctor's recommendations, she should at least get a 2nd opinion. Because DCIS is non-invasive, your sister can takes months to begin any treatment.   

In 2007 I was told twice that I would need a mastectomy for my DCIS. After consulting with Dr. Michael Lagios, a world renowned pathologist and DCIS expert, it ended up that all I needed was a lumpectomy, with no radiation or tamoxifen. Dr. Lagios has a consulting service that anyone can use. 

If your sister wants to discuss this with me further, she is welcome to PM me anytime,

Best,

Sandie

Because surgeons and pathologists disagree fairly often, if your sister gets a 2nd opinion from either or both, her treatment might be radically different. Even if it is not, she will feel much better about having a mastectomy if several experts say the same thing.

CTMOM1234

Your sister is my age, and I remember being frightened to death when I was where she is.  But there is not a single day that I wish I'd had a mastectomy rather than a lumpectomy & radiation! And eighteen days from diagnosis to mastectomy surgery sure does seem fast to me. The brain needs time to process all of this and it would be tragic if your sister looks back on the quick decision to have a mastectomy with regrets.

While mastectomy may wind up being her only option, I, too, would get a second opinion from a breast surgeon. There are some really good ones out there who may be more skilled to consider her unique medical situation-- and I would also meet with a separate plastic surgeon.

With DCIS she has the time now to make the best decision for herself. The surgery date can move.

MamaMia41

As everyone has stated previously, a diagnosis of DCIS means that we have an opportunity to take our time and make an informed decision.  I too am surprised with the short time span from diagnosis to surgery your sister's doctor is suggesting.  For me, things seem to be taking a long time.  I was diagnosed at the beginning of Feb, had genetic testing and MRI (and lots of waiting) before my lumpectomy was finally scheduled for 3/22/11.  I am now facing a decision about another surgery as radiologist thinks margins are too close to begin rads.  My surgeon tells me there is no harm in waiting until I am on summer break from work in mid-June to schedule next surgery.

I would definitly seek out another opinion, especially since your sister does not seem to be at peace with the treatment plan. Good luck!

Sandy105

I agree with what others have posted about this situation. I do think it is not only advisable, but absolutely critical to get a second opinion! I think second opinions are always a good thing but become absolutely critical if things do not seem 100% right or there is something which makes you wonder if things are moving along more quickly than you feel they should be!

There is nothing "wrong" with postponing a surgery if things do not feel right! A good doctor will understand this and do everything they can to make you comfortable INCLUDING refering you to someone for a second opinion!

Good Luck!

Sandy

Snobird

I agree SLOW DOWN this train. Your sister has time with DCIS. It is not considered invasive yet. It can and most likely, will, at some point become invasive but it could be months or years depending on the aggressiveness of the disease. Don't let her have full axilla lymph node surgery. The standard of care now is sentinel node surgery for IDC and it is not always recommended for DCIS. Please get a 2nd opinion and only a PS should be doing the reconstruction. She is blessed with time and she should take it to do the research for the best outcome. If her BS pressures her then find another. It is great that she has you to stand up for her.

Snobird

Find an NCI breast clinic. Travel if you must.

fluffykazzie

Well thank you ladies, thank you all so much for taking the time to reply, the update on my sister is that she underwent the surgery yesterday, she had to start taking diazepam to help get her thru the days, and the evening before her surgery she was out of her mind with worry, I did suggest that she postpone her surgery, I know that if it were me then that is what I would have done, but she felt like she was terrified of going thru with the surgery but more terrified of the DCIS becoming invasive and decided that she could not live with that fear, so one fear outweighed the other and her decision was made. We have to wait 10 days until the removed tissue has been biopsied before they can either give her the all clear and no further treatment or the other news, that she indeed does have to undergo further treatment, so please all keep your fingers and toes crossed that it will be good news. She only had the one diseased breast removed so has still got the other one, which is also acting a bit suspiciously, the diagnosis on that is a Hammertoma, sorry if I have not spelt it correctly, they said it is benign tumour of blood vessels but have biopsied it just in case and she is still waiting for the news on that. Obviously she will get more details once the labs have done their tests but all I know at the moment is that it was medium to high grade Comedo Necrosis and that it was in two areas, one area near the nipple, so they could not save the nipple, and the other area further up going towards the neck. She was offered in the begining 3 types of reconstruction, the Tram Flap, Silicon/Saline Implant, and the Latissimus Dorsel muscle, the muscle was not big enough, and the plastic surgeon ruled out the Tram flap saying that for her with her BMI he would not risk it, so that left her only option of the implant which the surgeon who removed the breast was going to do at the same time, I know it's strange having the same surgeon to do the both parts but that is what has happened. I did speak with her on the phone this morning and she said that the surgery went as planned, that she was obviously very sore and tired and that the implant was a lot smaller than her natural one but in time they are going to do a breast reduction on that one and even them up a bit more, so she is not panicking that they are different at the moment. She also wanted to pass on her thanks to you all and are all in her prayers, I will keep you updated on the outcome.