DCIS-high grade

I don't understand anyone having radiation before surgery for DCIS, or any other type of breast cancer.  Radiation alters the ability of your skin to heal, so the standard is surgery first, followed by radiation. In some invasive cancers, they do do chemo before surgery, but that doesn't affect your ability to heal. I also had high grade DCIS, with necrosis, and had a lumpectomy followed by 32 radiation treatments.  I have also been taking tamoxifen.  I saw the surgeon first, then the rad oncologist, and finished up with the medical onc who I continue to see for my follow-ups.  I am doing very well, and reached my five year mark on the 15th of this month.  Please make sure that you see a breast cancer surgeon, there are some general surgeons who specialize in breast surgery, but you want to make certain that you have someone who is well experienced and well respected doing your surgery. I know this is really stressful and you feel overwhelmed, but please believe that you will be ok.  I have a very good life.  God bless you, you will be in my prayers.

Just wanted to say that I also had high grade DCIS with comedonecrosis, and like Jenn, I had surgery first, now doing rads, then will move on to Tamoxifen.

They can't tell whether there's any evidence of invasion until after they do the surgery and examine the excised tissue in pathology. Chemo would only be recommended IF there was an invasive component. 

And, as Jenn said, radiation can complicate tissue's ability to heal.  Plus, as I understand it, radiation is not used to destroy a "clump," it's only used to destroy smaller things, like stray cells here and there.

Edited to add:  Tamoxifen or other hormonal drugs are usually only recommended for women who are estrogen or progesterone positive.  Your results aren't in yet (the ER/PR stuff). 

I too had grade 3 with comdeo necrosis.  They generally won't know if there is an invasive component until they take it out.  I believe the standard of care is surgery then follow up with rads and/or Tamoxifen.  Many women can have lumpectomy and rads with Tamoxifen and move on with their lives.  I hope this is you!  This part is truly the hardest.  Once you have all your facts and a plan in place it gets easier.  Most people generally have an MRI as well. For me I had all the tests done and then met back with the breast surgeon to come up with "the plan".

Good luck,

k

Yes, the MRI.  MRIs are controversial, some Dr's are very pro-MRI and some are very against.  Personally, I'm pro-MRI and would recommend you have one before surgery.  If there's any more cancer in there, in my opinion, it's better to know sooner rather than later.

That said, MRIs can have false positives as well as false negatives.  No imaging is perfect.  But I think MRIs are a good tool for evaluating the extent of disease. 

I'm confused - after reading your posts again, it seems you haven't seen a surgeon yet. What Dr. have you seen?  Did your PCP send you for a yearly mammo, which showed problems, then they scheduled a biopsy, and you haven't really spoken to any breast specialists yet?

So, the breast specialist you saw is a radiologist?

There is an article in yesterday's NYTs that those of you with questions about your receptor status might want to read.  While it focuses on HER2 and testing, it also says that all of the tests have a certain margin of error.  I am thinking that the reason we are all sometimes told A and then told B is because they re-run the tests and end up with different results.

For all of the reasons already mentioned, protocal is surgery, radiation and then if deemed necessary, tamox.  That does not mean, however, that you can't see all of the different types of doctors BEFORE you decide what to do.  I saw 2 breast surgeons, 2 plastic surgeons, 1 oncologist and a radiation oncologist before I decided on the type of surgery and I'm glad I did.

Nancy Brinker, in her book "The Race Is Run One Step at a Time", advises that you assemble your "cancer team" as a whole, integral unit.  This can be a life time relationship, and you do want to make certain that you like, respect and trust all of your team, surgeon, onc, ps, etc.  You want to be able to discuss your options and feel comfortable asking questions.  You should never feel rushed to  make a choice about surgical options, etc, and second and third opinions are sometimes needed to find the right fit.  You may even want to have a friend or family member act as your advocate in regards to insurance and financial aspects of things as this can be so stressful and draining, and takes away from your ability to focus on you getting better. 

A mastectomy was never a consideration for me, so a plastic surgeon was not an issue, but I did take some time getting the rest of my "team" together. If a mastectomy is something you are considering or becomes part of the equation of your treatment plan, please take the time to try to find a surgeon who does a skin sparing mastectomy as the cosmetic outcome is normally better in that reconstructed breast. You are in that early, crazy, stage where everything is scary because you don't know anything yet.  I am not sure about this site, but the Komen has list of questions that you can print out and take with you to your various doctors.  Write down questions as they occur to you and if you can't take somebody with you, I have some friends who have taken tape recorders with them as we tend to forget what doctors tell us when we are under so much stress.  I hope you find doctors that are a good fit for you.

I got my breast surgeon from the first plastic surgeon.   And I got the oncologist from EVERYONE [you know its good when everyone tells you someone is excellent].

Another thing to consider---if your breast surgeon is telling you things like you may need a partial mastectomy or plastic surgery after radiation, you should speak to a plastic surgeon first.  Many plastic surgeons will not perform certain types of plastic surgery on radiated boobs or radiated tissue.  This means that certain types of reconstruction won't be available to you or can be available only  with a high risk of complications and failure.  With only a partial mastectomy, you will probably be told you need radiation after surgery.

The first PS I went to took the time to explain to me why he believed that if I needed plastic surgery after a lumpectomy [what 1st breast surgeon was saying] then something had gone really wrong.  He also took the time to explain the impact of radiation and the potential complications of the various types of reconstruction.  It was quite an education and I really appreciated it because it gave me lots of good information to work with.  I ended up with a lumpectomy and no need of a ps but I'm very glad I took the time to meet with him. Breast surgeons know how to take out cancer.  Plastic surgeons know how to make whats left look pretty.  Each is a specialist and theres nothing wrong with talking to them both.

Some hospitals and cancer centers do use a team approach.  You can't go there unless you accept all the members on your team.  At one point, there was concern that I had thyroid cancer as well as breast cancer so I set up an appointment at a big cancer center thinking maybe I needed more experts.  But when I met breast surgeon#2--shortly after I got told no thyroid cancer--I knew she was the right one for me.