Anyone with DCIS choose a wait and see approach?

TaraLeeOm

I am wondering about the experiences of women who decided to wait and see how their DCIS progressed. I am considering at least waiting a couple of months before rushing to surgery, as I am uncomfortable with the feeling of being forced into surgery before I have time to process this huge change in my life.

Has anyone taken their time with this, or know of someone who did?

Sweet_Pea

I can totally relate to your feeling rushed into surgery. I was diagnosed last summer and they were rushing me in, also. My area of pre-cancerous cells was huge, more than 6cm, and a MRI-guided BAV biopsy then turned up DCIS, so their thought was a mastectomy from the very beginning (actually even before they knew about the DCIS) given the area to be taken out compared to my breast size.

I got a second and a third opinión, which led to more testing, which meant I wasn't operated on the next month like they had planned at the beginning, but 3 months later. The testing helped me get my head around the whole thing and feel more sure about everything. But when I asked whether I could wait, they said, "We don't recommend waiting, for instance, six months. We don't know for sure what we're going to find in there." And so it was. Hopefully someone who waited more can chime in for you!

Ingerp

My first decision point was about nine years ago, when I got a mammo call-back, had a biopsy done, they found ALH, and recommended an excisional biopsy (essentially a lumpectomy). I struggled with this and did a lot of research--from what I could gather there was about a 20% probability that they'd find something uglier (like DCIS) in the vicinity. My sister was the one who finally convinced me to just have the dang area cut out.

That really left my brain space, to the point where I was about 18 months late on the mammo I had two years ago. Large chunk of DCIS (8cm x 6cm x 3.3cm), but I never questioned having it removed. But I also never considered a mastectomy. Just my personal preference to keep the breast if I could. FWIW, I don't think having the mammo 6-12 months earlier would have changed the dx, but I do think the area might have been smaller. Regardless, I have a "shark bite" (as my BS called it) out of that breast but still have plenty left.

I just had another lumpectomy last week--again did not delay the surgery. Now all that said I can see it would be *very* different if I were considering a mastectomy. Having a chunk cut out (even a large one) is just not a big deal to me. When the RO asked me if I was going to have plastic surgery to even them up, I looked at her like she was nuts.

I also wanted to mention that the IDC I have now was nowhere in sight six months ago. Not trying to scare you.

Is lumpectomy an option for you?

LostGirl

When I first diagnosed, I felt rushed by the nurse/doctor. I felt like they wanted me to have the surgery within 2 weeks. When I told them I couldn't make it because of work-related travel, they then kept me waiting for 2 months and reassured me it was totally OK. I guess they just wanted to keep their surgery schedule as full as possible. Based on your DCIS size and medium grade, i think it is OK to wait for two months. I waited for 2 months and I felt it was very helpful to keep me acknowledged and prepared.

Bbccats

I was told that it was not an emergency, even though it might feel like one, and to take some time and decide. My biopsy showed dcis suspicious for microinvasion. The surgeon said a couple of months was fine but not to leave it six. I decided not to wait and had a lumpectomy about a month later. I just wanted it it out.

TaraLeeOm

Thanks, all, for your experiences. My biggest issue is the location of the cells, up against my nipple, so it would have to be removed. If it were just a chunk from somewhere else, I'd be less hesitant. I feel that if they're going to remove 25% of my breast tissue and the nipple, I may as well get it mastectocized (is that a word?) and not have to have radiation. I also have a huge issue with the hormone inhibitors. I've read there are so many possible side effects, like stroke, that I don't know what's worse....taking a chance on cancer in my other breast or one of the side effects

Georgia1

Hi TaraLeeOm, and I get how hard that decision would be. Because of the masectomy vs lumpectomy decision I'd advise getting a second opinion and taking your time; maybe consulting a plastic surgeon too. Don't hesitate to start a new thread and get opinions if you want them; I had lumpectomy, radiation and hormones with no problem but you're right that the location makes it tough. Best wishes.

Pi-Xi

I definitely considered the wait-and-see approach, but went with a BMX instead. I had a significant area of calcifications (and I was small breasted) that showed ADH in the core needle biopsy and DCIS in the excisional biopsy. Imagine my surprise with 1.4 cm of invasive cancer in the final pathology. I was just in the unlucky percentage. Imaging including MRI missed it. The tissue was just too dense.

TaraLeeOm

I’m hearing at the very least they’d want me on tamoxifen. I keep hearing awful stories about the side effects. I may go with the single masectomy, just to avoid that

Pi-Xi

That was my plan, but with the IDC, I find myself on the drug.

I hope you'll be on the good side of the stats!

Pi-Xi

By the way, I certainly took my time making my decision (two months, so it was three months before I had surgery) and despite the findings, I don't regret it.

Rrobin0200

nope, no way. I was initially told that I could take the wait and see approach. But cancer is so unpredictable sometimes. I wanted to be in complete control. I know for some that an invasive procedure is not on their radar, but for me, it was the only way to go. And thankfully I bounced back instantly.

Robinda2970

Was your pathology after mastectomy the same as original??

Robin.

TaraLeeOm

Well, I’ve decided to go with the single mastectomy. The issue now is my daughter’s wedding in mid-May. They are making me feel bad for wanting to wait till after. They say the wedding should not factor into my decision. Hellooooo. Of course it will factor in, I’m not a robot. All I asked for was about 2 1/2 months, which is now down to about 6 weeks.

Gosh, what to do, what to do........

EncoreKennel

Hi Tara! I totally get the frustration you are going through... getting a cancer diagnosis ALWAYS disrupts our plans in life! 🤗 Congrats on your daughter's up coming wedding, BTW. I got my diagnosis in Feb.. just as we sold our house, so am moving and dealing with contractors on our new house.. 90 mins away... so I get it! Have to deal with all that plus changing doctors in the middle of chemo! Life is funny that way! But God is in control and He's got this! 😁

As far as your situation... do not think you do not have cancer and can do nothing! Do not let fear paralyze you into hiding your head in the sand! THIS is the time to take control of your life and fight like heck to keep it! What good does it do to go to your daughter's wedding if you aren't there for her children's graduation from high school? Please listen to your medical team. Surgery will not be that bad... I am less than six weeks out and back to my full routine after only 4 weeks... plus have MS and diabetes for decades so complicated factors. YOU CAN do this... I promise you... all of us here will support you. God will give you strength... Do not do nothing... stand up and give cancer the black eye it deserves!!! Get that beast cut out and go from there... if you are not comfortable with your medical team... get a second opinion and change doctors as necessary... but if you trust them... then TRUST them..... please. Please know I am not trying to be harsh... just worried about your delay for so long... it will never "fit in" time wise so just do it and start recovering!!! Big hugs to you!! ❤❤

Egads007

Everyone has different viewpoints and situations...as is their right. For myself, I wanted it out...as quickly as possible. I have no regrets. I also have no judgement on those who wait to process it. I personally was erringon the side of caution, was afraid of METS.

proudtospin

nope, i was told by bs that i could think about it but sooner would be better than later

TaraLeeOm

Thanks, all, for your thoughts. My case is a little different in that my DCIS involves my nipple and it would have to be removed. Because of that, I am opting for a single mastectomy. I would NOT be up to snuff in time for my daughter's wedding. I have decided to get my surgery 4 days after her wedding. That means I will have waited 2 months since my Dx. I know anything can happen at any time, but after careful consideration I have decided to wait until then.

I have spoken to 2 breast surgeons and 2 oncologists. 2 say I can wait, 2 say I shouldn't.

My original surgeon scheduled me for surgery the day I was diagnosed -- in two weeks time. My head was spinning at that point. I have no family history of cancer, I am 63 years old, it came totally out of the blue. I think it was not right to rush me into surgery like that. I feel justified in doing due diligence with this. I wanted second opinions, I wanted to speak with other doctors. I do not think that is being rash.

sandcastle

Tara....It is YOUR journey and YOUR Choice, always remember this...Liz

LisaK12

Don't let anyone rush you into anything. DCIS is generally not an emergency. I was diagnosed in December and had two lumpectomies with unclear margins in January. My DCIS was just behind the left nipple. My BS recommended a unilateral mastectomy and sentinel node biopsy. I took my time, did a lot of research and reading on these boards, and got a second opinion. Second opinion recommended a third lumpectomy and radiation. I decided on bilateral mastectomy (skin-sparing but not nipple-sparing) with sentinel node biopsy and immediate direct-to-implant reconstruction, which happened one week ago today, April 10. For what it's worth, I just got the pathology report . The key takeaways are (1) the sentinel node was clear; (2) DCIS was present on 9 out of 45 slides (one-fifth) of the tissue samples from my left breast, which I doubt they could have removed successfully with a third lumpectomy; and (3) while DCIS was not found in my right breast, lobular carcinoma in situ and atypical ductal hyperplasia -- areas of abnormal cell growth that increase a person's likelihood of developing invasive breast cancer later in life -- were present in my right breast as well as my left. Multiple intraductal papillomas were present in both breasts as well, which are also markers for increased risk of breast cancer. So I am feeling very good about my decision to have a bilateral mastectomy. While it wasn't an easy decision, it was the right one for me.

I am also happy that I had immediate reconstruction and chose to have silicone implants (no tissue expanders) placed pre-pectorally. I lost no range of motion in my arms and have had very little pain. Two nights ago we went out for dinner. I have been walking 10-20 minutes every day and building up my stamina.

Good luck to you with your decision -- you have to do whatever is right for you, which is a different calculation for everyone.

TaraLeeOm

Thank you, LisaK, for your experience. That is interesting you had the silicone with no expanders. That was not presented to me as an option. I will have to ask about this.

It is also encouraging to hear how upbeat you sound. That is comforting