Newly diagnosed - feeling overwhelmed

Goose11

I was diagnosed with DCIS (Stage 0) on June 1st. Mammo on May 10th, biopsy May 31st. 13mm. I do not know the grade, etc. Met with BS on June 5th. She kept trying to reassure me by saying this was not going to kill me, was non-invasive and had probably been there for years. Then, she somewhat off-handedly stated that the area was too big to get a good cosmetic result with just lumpectomy. She scheduled appts with genetic counselor, RO, and PS with the assumption that I would be doing a MX. I told her that I didn't want a MX if at all possible and had made no decisions. She encouraged me to meet with each of these people and get information, then meet again with her in a few weeks.

Since then, I feel rushed to see doctors, get tests and make the decision for MX. I'm still processing the diagnosis and I'm a ball of emotions. I had an emotional meltdown at the lab when the technician asked why they were drawing blood. Poor guy. He was not prepared for that.

Here's the thing - what if I'm ok with not a good cosmetic result? I have large breasts (34D) and would be quite happy with smaller ones.

And don't get me started on my gyno (who I love). When she called me with the DCIS DX, she told me that if genetic testing came back positive for BRCA, we could schedule hysterectomy. Huh? I told her that I can only handle one crisis at a time.

Is it ok to take a step back, process all of the info coming at me and make the decisions that I'm happiest living with? I just feel like everyone wants to cut and cut and cut.

LisaAlissa

Hi Goose.

Yes, yes it is ok to step back and process the information that you're getting before you make your decisions.

But you're going to want to be very deliberate with your process and your decision-making. And some decisions can only be made in the context of others. That is, you may not be able to make them all at the same time.

When you talked with your doc about your pathology report, did they give you (or did you have) a copy of the pamphlet about pathology reports from BC.org? If not, you might want to print one out from "here" and fill out the details. That, too, will help you think through the various considerations. And if you want specific feedback from people who share the particulars of your diagnosis, you can add those to your "signature" and then make it public...

In the meantime, have you read Beesie's post on DCIS in the thread titled "A layperson's guide to DCIS"? That's a great place to start--and it's so "info-dense that you'll probably want to go back to it more than once.

You'll also want to check out her list of things to consider as you decide on whether or not to have a LX or a MX. You'll notice that she was told that given the extent of her DCIS she wasn't a candidate for a LX. I don't know if she talked with an oncoplastic surgeon or not, but if you have access to one, that might be a good place to be in trying to avoid a MX.

Let us know what you're thinking about and we'll be glad to pipe it, I suspect.

My very best wishes to you!

LisaAlissa

Jujube2

I'd just like to encourage you to take it one step at a time. You have a lot of information coming in and you will have to process that as you go.

The initial time After you get the diagnosis is the worst part! I found it was easier to wrap my mind around when I had all of the information and could make a plan.

You can do this! Sending you a hug!

Lula73

so sorry you're having to deal with this too. Everything does seem to come at you very fast at first. It's really a time of information gathering but as they throw results at you right and left it's hard to keep calm and think straight. It does get better. Much of the information gathering that's going on now with biopsy, scans, blood work and genetic testing are all interrelated. It's ok to stop your dr and ask how it's all related. It's ok to stop them ask why they're saying MX is the recommendation-it may have to do with pathology and/other things seen on mammo/MRI/scans. Having pretty much only having the option of bilateral MX, I can tell you that doing skin & nipple sparing MX with immediate reconstruction makes a huge difference vs traditional MX. And you have choices of implants or natural tissue reconstruction (I did natural tissue and they pretty much look and feel like they did before surgery.) as far as hysterectomy, that can wait a bit even if genetic testing comes back positive for it. I've put mine off 5 months so I could do it at same time as stage 2 breast surgery. In the meantime start a notebook of test/scan results, write down all your questions that come to mind, ask the dr to give you a timeline and layout of your treatment plan options and don't be afraid to stop the dr and ask them to clarify and/or have them explain what they're saying in layman'sterms. Good luck to you!

Davy

(((Hugs))) Goose.  You have every right to go step by step and not allow the doctors to dictate your treatment.  Some doctors will treat every case in cookie cutter fashion, but you do not have to accept that.  Jot down questions as you go along and make an informed treatment plan WITH your doctors.  They should not tell you what the plan is.  Is this medically necessary?  What are my other options?  What if I take this path instead...what are the considerations?  What does the research indicate about this?  

I agree that this gets a lot easier when you have decided on the treatment plan, but it doesn't all have to come together by close of business on Wednesday...if you get what I mean.  

You are stronger that you imagine and your voice should be heard.  

Goose11

Thank you for your responses. I met with the Genetic Counselor yesterday and she reassured me that no matter what the results, it was my information to use as I choose. This was the first time in since my diagnosis that I was made to feel like I had some control. She also encouraged me to meet with the PS now while we are waiting on test results, MRI etc. She pointed out that it was worth the $40 co-pay to get info on what the PS thought he could do in various scenarios (lumpectomy, UMX, BMX) so I had that when meeting with BS after all the testing is done.

My MRI had to be rescheduled because they scheduled it the day I'm supposed to start my period. I have dense breasts already and I've read several posts about false positive on MRIs if done at the wrong time in your cycle, so I'm OK with this.

MTwoman

Goose, there are "false positives" on mri regardless of the cycle time. That's why it isn't routinely done; all of the resulting biopsies that then follow after "finding" something. That being said, it is very sensitive and "sees" things that other technologies miss. Like for me, 2 more areas of DCIS that hadn't been seen before on diagnostic imaging. I had selected lx as my surgery of choice. I got a second opinion on my pathology as pure dcis seemed (in comparison) a great diagnosis, and I wanted to make sure nothing was missed (like micro-invasion). My second opinion pathology report came the day before I was scheduled for my rads mapping. The second opinion suggested an mri, as my architecture type tends to present as multi-focal disease. (MRIs are routinely done now, but back then, not) I made the very difficult decision to put rads on hold and fly out of town for an mri (my smaller hospital imaging center didn't offer them at the time). Long story short, 2 more areas were found and upon biopsy were also identified as DCIS. So I ended up with mx, as that is what was needed to rid me of the bad cells. If I had gone into rads with those 2 areas intact, they may not have been eradicated by the rads and could have progressed. I was triple negative, so wasn't a candidate for endocrine therapy. While I was definitely initially upset about not being able to stick with my choice of lx, I ended up not having rads (you typically don't do rads after mx for DCIS) which means that, heaven forbid, I have a recurrence, I can still use that intervention. (you don't irradiate an area of the body twice). I quickly came to the conclusion that I would do whatever it took to give me the most risk reduction as I was 38 and still had/have a lot of time for a recurrence or another primary.

It is a lot to take in quickly, and you should most definitely make decisions based on 1) your personal risk profile (please have your providers discuss this with you), 2) the risk reduction provided by the various interventions (each specialist should be able to tell you your recurrence risk and the reduction in your personal risk that is offered by their specific intervention) AND 3) your personal tolerance for risk. These 3 things are different for everyone; which is why there are so many women with similar stats who chose different treatments. Cosmetic result is definitely a consideration for your surgical team, but there are practical reasons as well. Make a list of your questions and make sure you are getting the answers you need to make the best decision for you, before moving forward.

Good luck and gentle ((hugs))

Annette47

Just to add to what others have said, with your size breast (same as mine), 13 mm (you didn’t mean cm, did you? because that would be a different story) is really not THAT large an area that they shouldn’t be able to do a lumpectomy, unless it has something to do with where in the breast it is located. It might be worth getting a second opinion with another surgeon if this one isn’t confident about doing a lumpectomy with good results. There are also options for reconstruction after a lumpectomy (such as filling in the “dent” with fat transfers, etc.). They aren’t as commonly used because most lumpectomies have good cosmetic results, but it might be something to look into. I definitely wouldn’t let someone rush me into a mastectomy if I didn’t want one without fully exploring all my options.

Best of luck!

pinkvictory

Hi Goose. I was just diagnosed on June 1st as well. This has been a tough month. It is very overwhelming with all of the appointments and decisions that have to be made. seems like for every one decision made there are so many follow up decisions regarding the choice. I have been spending every waking minute trying to sort through all of the information and make sense of any of it. so confusing at times with all of the numbers and percentages and varying risk factors etc. Maybe it would help you if you had a second opinion about your treatment plan? You definitely want to make the decision that feels right to you , it is your body after all. Leading up to my decision has been exhausting, emotionally and mentally. I had a lumpectomy back in May(due to ADH), which revealed the DCIS. My recent MRI showed that they did not get the entire area, there is residual DCIS that needs to be addressed. After the numerous appointments that followed, I called today with my plan of treatment. I am a worrier, so I have chosen a bilateral mastectomy. Hopefully I will sleep better tonight, now that I have made that dreaded phone call. I hope that you find the option that is best for you, and have the support of your medical team. best wishes moving forward...