What to do, what to do.....

You are not odd at all! We all have our own ways of looking at things. I am going to give you the answers in my opinion. I was diagnosed with DCIS in April.

1. It sounds a little like you may be in the denial stage...cancer diagnosis does tend to put us through all of the stages of 'death'...its not a literal death experience but it is the death of the way things always were.

2. do your research on the wait and watch, there is a lot of great info here. My understanding is that level 3 is the level most likely to become invasive. If it is 'possibly invasive' then its worth the biopsy to find out for sure. A biopsy does not make you lily-livered high maintenance; think of it as becoming an educated healthcare consumer. Your treatments and options are different when it is invasive.

3. That nurse sounds like a piece of work. I think that you might not want to rule out a good doc because of a stupid nurse. Perhaps speak to the nurse manager if there is one in the office, and explain your concerns. The nurse should have had much more tact than she did. I'm a nurse, and therapeutic communication is one of the earliest lessons we are taught. If there is no nurse manager, then I would bring it up to the doctor. It is very possible the nurse thought she was helping you but that her communication style was lacking. Or she was just stupid.

4. I ended up going for a bilateral mastectomy, and I was only a level one. I am certainly NOT telling you what to do, but I am concerned at your result of level 3 and possible invasive. My thought would be that you may really want to consider the biopsy to see exactly what you are dealing with before you decisde how your treat it, because depending on what they find, the treatment may be different. Cancer is a big deal, even if it is stage zero. DCIS is cancer. 

 I hope that anything I said is seen in the way I meant, which is to help and inform and in no way tell you what to do. 

I have DCIS I am also emotionally detached, they didn't give me an option they told me I needed a biopsy. It turned out I have mucinous cancer and dcis. I feel like I am in a cloud , I don't know when I will realize and feel what is happening. Tomorrow is my first visit with the surgeon. It is very strange. Good luck to you.

LadyGrey,

All DCIS is not alike.  Personally I think all DCIS should be surgically removed, but I could see the argument that a tiny amount of low grade DCIS might be safe to leave in the breast, at least for a while.  But that's not your diagnosis.  You say that you have high grade DCIS, and possibly have some invasive cancer as well. That's a whole different ballgame.

The statement "that a large percentage of DCIS never becomes invasive or becomes invasive 25 years later, it is not really cancer and it is over treated." may be true of small amounts of low grade DCIS, but it's certainly not true of high grade DCIS.   The question of what percentage of DCIS eventually becomes invasive is a topic that really interests me, and I've done a lot of reading on it.  I will bump up an older discussion thread called "DCIS to invasive statistics" in which I provided a summary of a lot of what I've read, along with the links to the articles.  Dig around and decide for yourself if you really believe that most high grade DCIS never becomes invasive.  I'll also bump another thread where I summarized a lot of information - and misinformation - about DCIS.  Again, don't take my word for it, but maybe the info will help with questions to ask your doctors, or lead you to your own research.

Edited to add:  DCIS doesn't need to be HER2 tested but it definitely should be ER and PR tested.  That's standard procedure and I don't know why you were told otherwise.    

LadyGrey,   I am also not emotional about DCIS...and consider it more of a major inconvenience to me than a life changing medical situation.  I refer to is as sort of pre-cancer when I tell people, otherwise I get too much unwanted attention about it.   I will get my lumpectomy next week  and if the margins are clear, I may not do radiation.  I will wait for the pathologist report and meet with a radiology oncologist to see what the odds/risks/recommendations look like for my specific situation.  I will also meet with a medical oncologist, although I have serious doubts about taking Tamox....I will meet with the expert, keep an open mind then make up my mind.  The way I see it, they are going to be giving me Mamo's every 6 months, so if there is a re-occurance it will be caught before it goes into a late stage, and will be curable.   

I considered doing the 'watch and wait' thing, but I figure that the chances of me having to get other more invasive treatments (rads/tamox) later would be reduced if it just get rid of it all now.

Good luck.  Dont feel pressured to select certain options just because it is what everyone else does. Educate yourself, understand the risks, and make the decision that is right for you. 

Hi LadyGrey... I'm sorry to hear hat your finish line keeps on moving. This is a good site to get info on the race course, though. My sister and I both had bilateral mastectomies with reconstruction and we both had a breast surgeon as well as a plastic surgeon.

Ignore the nurse.



The only things that limit breast surgeons and plastic surgeons working together is where they have hospital privileges and if they can play together well.



Your tissue MUST be tested for hormonal status at the time of surgery. It is the standard of care.



If the scientific community knew the natural history of DCIS better, treatment could be tailored for each woman based on many factors, but we don't. Watching and waiting is a tough call and certainly doesn't sound at all reasonable or ethical given your results.



This is so crappy for you. I truly empathize with the roller coaster ride. Make your treatment decisions with your docs after exploring all rational options and outcomes. You have no control over this crummy disease but total control over how you chose to treat it.

Jan

Testing for hormone status is standard of care.  I am shocked and appalled that your hospital does not do this.

Pathologists will generally not meet with patients.  You got lucky. 

I was able to have the radiologist show me my MRI, also uncommon.  Like you with your pathologist, I'm grateful for the insight that provided.

I must have seen 10 breast surgeons and 5 plastic surgeons before I decided what I wanted to do.

I'm relieved you've changed your attitude, since "grade 3 w/comedonecrosis and the possibility of invasion" has already left the happy world of a "non-cancer that gets overtreated." 

Some doctors give their cell number to all their patients.

I'd like the cell number of that nurse.  I'd like to have a little chat w/ her.

I complained to a major hospital about one of their breast surgeons (my "first" second opinion).  Mine was not the first complaint, and she no longer works for that institution.

LadyGrey,  That's infurating.  I had to wait a couple of days for a copy of my MRI results (after being verbally given an initial impression of the results the day of MRI)...to give the radiologist a chance to review the images in detail and make sure she did not miss anything, then to document the findings.  But that was literally only 2 days...which seemed reasonable.     A 10 day waiting period imposed by them is nuts, especially when you are talking about cancer.  In reality I bet they have a procedure that the radiologist has X number of days to dictate the results into a microphone, then the transcriptionist has Y number of days to transcribe, then maybe someone else has days to review....not a patient-focused way of operating.

Also, you could tell the Administrator of the Radiology Group that you need a copy of the report and films/CD for your second opinion (or new) doctor and ask them to give you the copy to take with you. 

Since your appointment is tomorrow you need to deliver them personally, although FedEx for arrival tomorrow would be OK.

Get in touch with the words "Let me speak to your supervisor, please." This phrase often has to be repeated as you go up and up the chain of command.

Like you, people who say "no" to me almost always end up regretting it. Sometimes deeply.

Keep at it. You don't need me or anyone else to tell you how, I'm sure. 

LadyGray,

I haven't heard about losing the nipple with lumpectomy.. I have heard about *saving* the nipple with a mastectomy. It's called a nipple-sparing mastectomy and some surgeons will do it if the conditions are right. You still lose sensation, though.

As "recommending the double for aesthetic reasons" - that's a valid reason, but there are many valid reasons to avoid a double if possible. The surgery is much harder and you lose use of both arms during recovery. You also lose sensation to BOTH breasts (for me, retaining sensation was a big objective). Finally, I have seen various discussions here where things did not end up symmetrical even after a double, or one side ended up with complications, and people were dissatisfied (probably a minority of cases, but worth considering). On the other hand, there is something to be said for piece of mind with a double, though there is always some possibility of recurrence since it is impossible to remove all breast tissue.

ER-/PR- means you are not a candidate for Tamoxifen. So I would assume your chances of recurrence are a bit higher than if you were to take Tamoxifen. Your oncologist or surgeon should be able to discuss your risks.

(as for the not testing DCIS for hormone receptors - my experience was they didn't do a hormone receptor test during initial pathology, and waited until final pathology after surgery. Maybe that was what they meant)

Larger does have a higher chance of being invasive, as does higher grade.

Back to normal within a month, hrm. I would say probably back to work within a month, but "normal" probably takes a few months longer, especially if you are doing reconstruction.

LadyGrey,

If you have the mastectomy or bilateral, are you looking at doing reconstruction?  Without reconstruction, I could see that you would be "back to normal" (or the "new normal", really) within a month.  With reconstruction, no way.  Not even close.

As for recommending a bilateral for aesthetic reasons, if you are not planning to have reconstruction, and particularly if you are large-breasted, I could see that argument being made. But I have major concerns about any plastic surgeon or breast surgeon who recommends that to a patient who is having reconstruction.  With reconstruction, there are ways to achieve reasonably good (or even excellent) symmetry without removing the other breast.  For those with smaller breasts, good symmetry might be possible just with reconstruction on the one side.  Or, many women do what I did, which is to add an implant into the 'good' side, to create more fullness and thereby better match the reconstructed side.  For those who have larger breasts, a lift and reduction are often done on the 'good' side to help with symmetry. Or just a lift for those who are a bit saggy.  The point is that there are many ways to achieve symmetry for those who are having reconstruction, other than just lopping off the other breast. And in fact having the second mastectomy opens the patient up to a whole bunch of possible problems.  About 30% - 40% of women who have reconstruction require revision surgery, and if you have reconstruction on both sides, then obviously you face that risk on both sides.  And as many who've come through this board have learned, having a bilateral provides no guarantee of symmetry.  Even if you are having reconstruction done on both sides at the same time, each side is in effect it's own operation and the body reacts to the reconstruction in it's own way on each side. I've seen too many cases come through this board where the 'problem' breast with reconstruction was the side that was done prophylactically.  

If a bilateral is what you want to do, or if it turns out to be medically necessary or medically advisable because of concerns with your other breast, that's one thing.  But for those who require only a single mastectomy and who are having reconstruction, personally I feel that the PS is either lazy or not particularly competent if they recommend removing a healthy breast as a way to get symmetry.  Just my opinion.