Second Time Around

sjlewis73

Good morning,

I was recently diagnosed with DCIS, cribriform type, nuclear grade 3 of the left breast. ER and PR receptor studies are pending. After already having IDC on the same side in 1999 at the age of 26, and having chemo/radiation therapy back then, this came as quite a shock. I am happy to have so much information at my fingertips this time around as I had no idea what was happening to me back then. I am nervous, I am scared, I am exhausted with emotion. From what I understand, this is very curable so I am going to hold on to that thought as best I can.

My next adventure is to the surgical oncologist on Tuesday the 9th. I have no idea what to expect at this appointment. Are they going to discuss surgery? Will I get the actual pathology report? Are they going to discuss treatment? I know that every situation is different but I was wondering if someone out there has had to deal with this twice with so many years in between? I called the Dr's office this morning and was told that my husband was able to come in with me this time. That made my day since he has had to wait in the car on my last few appointments due to covid rules.

Thank you in advance for any advice you can give! ;0)

moth

Hi sjlewis, you need to know that DCIS is stage 0 and is a pre-cancerous condition ... so as long as no invasive cancer is found at surgery, this is indeed the most excellent of news.

You should be able to get a copy of the pathology reports, whch will indicate the size of the affected tissue and the hormone markers.

I would expect the surgeon to go over your surgical options. Final staging isn't complete till after surgery. After that, you'd likely be referred to a medical oncologist who will make recommendations about systemic treaments which might be needed though you might get to talk to one even before surgery to get an idea of what might lie ahead.

best wishes

LivinLife

Welcome sjlewis and sorry you're dealing with all this!!! As you can see below I was diagnosed with DCIS. Yes, I cannot believe they would recommend anything except for surgery, esp. with your history of IDC. moth gave great information. there is not much I can add to that. The hope is it remains DCIS upon final pathology post surgery. Please let us know how your appointment goes, all right? I'm glad your husband is able to join you! You may want to ask him to write notes too....

Beesie

sjlewis,

You are not alone in developing a second breast cancer many years after your first diagnosis.

With this many years in-between, and with your first diagnosis being invasive cancer and this diagnosis being DCIS, this is almost certainly a new primary cancer, and not a recurrence of the original cancer. As women, even though we've had breast cancer before, and even if it was successfully treated, we are at risk to develop breast cancer again, just like any other woman. In fact, having been diagnosed one time before, our risk to be diagnosed again is actually higher than the average woman's risk. My oncologist told me that my risk of developing a new primary breast cancer was double that of the average woman, and studies I've read seem to confirm that. And just like for all women, the risk to develop breast cancer increases as we get older. So for us, having being diagnosed before, our risk to develop a second breast cancer increases as the years go by and we get older. Your first diagnosis at age 26 was very unusual. Your second diagnosis, at 47 or 48, is not that unusual at all.

Now the good news, as the others have mentioned, is that the preliminary diagnosis is DCIS. I would expect that at your appointment, the surgeon will give you your biopsy pathology report (if it's not handed to you, ask for it!) and talk about surgery. Usually after a lumpectomy, even for DCIS, radiation is recommended. Sometimes it can be skipped but that's not advisable with grade 3 DCIS. Since this diagnosis is the same breast as your previous diagnosis, and since you had rads previously, this means that it's likely that a mastectomy will be recommended, because rads can't be given to the same area twice. As for the rest of the treatment, that will depend on the final pathology. If the final diagnosis is pure DCIS, Stage 0, with no invasive cancer found, then surgery might be all that is recommended. If you have a single mastectomy, anti-hormone therapy might be recommended as protection of your remaining breast. If your choose to have a bilateral mastectomy, usually anti-hormone therapy is not recommended when the diagnosis is DCIS. Of course if the final surgical pathology finds some invasive cancer (usually there is about a 20% chance of that happening after a needle biopsy diagnosis of DCIS), then the treatment plan will be based on the invasive cancer pathology.

Hope that helps! Good luck with your appointment next week, and let us know how it goes.

sjlewis73

Hi Beesie....Thank you so much for the information. This is very helpful. Our situations are almost identical. I will certainly post an update after my appt.

sjlewis73

Thank you LivinLife...that's a great handle! I will keep you posted. Stay well ;0)

sjlewis73

Moth,

Thank you for the information...looks like you're currently in the battle with this terrible disease and I wish you well in your journey. I can not imagine having to go thru all of that in such a short period of time. I wish you good health in the days ahead.

sjlewis73

Update from my appointment with the surgeon:

I tested position for ER and PR receptors. We have decided that a bilateral mastectomy would be appropriate due to my history. They will be scheduling me once they get the genetics test results back...in about 3 weeks.

LivinLife

Thanks for updating us! Sounds like you are comfortable with the surgery decision! Makes sense to me....and I don't even have your history....

Melissag41

Hi

I have also been recently diagnosed with a 2nd cancer (dcis) , first diagnosis at 38 had lumpectomy, radiation chemo and tamoxifen. Now 19’yeats later at 57 diagnosed with DCIS. Since I had radiation , I think my only option is mastectomy. I’m trying to determine if I should do reconstruction since there there is.a 50 percent chance of recovery complications due to prior radiation. I have to make the decision to reconstruct at time of mastectomy or not. If I don’t do it then I won’t be able to later due to prior radiation. I am wondering if anyone around my age (57) have had a mastectomy with no reconstruction and do they regret it? Seems the safest path but something I will have to live with forever, also if I do mastectomy I’ll do a bilateral. Any feedback if appreciated thank

Melissag41

hi

I was just diagnosed with dcis as a second cancel . I think I will also do bi mastectomy, no other option really. I am struggling with whether I do reconstruction or not due to to the added risk due to prior radiation I am 57. I met with the plastic surgeon. Today who told me about the added risk... also if I don’t do it now I won’t be able to do it later due to prior radiation

LivinLife

Welcome Melissa! Type of surgery is really so personal so I cannot tell you what to do though am willing to share some of my process. I'd also recommend you checking out the forums/threads or using the search box on mastectomy, reconstruction/not, bilateral, etc... I was unable to have radiation so mastectomy was the most appropriate option for me. I chose bilateral b/c I have autoimmune and healing issues, already had many call backs and biopsies of my "healthy breast", am 58 so did not want to walk around with a remaining large gravity-laden breast, etc. etc. I knew prior to my DCIS diagnosis I would never undergo reconstruction - saw to much on the scleroderma boards from people who did and it did not go well for them.... So I go flat - don't want to mess with prosthetics, etc. I have no regrets - am very comfortable. After having large breasts all my life this really has been freeing and so much is easier, esp. exercise and sleeping!!!

Pokemom1959

I’ve read that a mastectomy is usually recommended after a prior cancer, treated with whole breast radiology in the same breast ... but what if the first cancer was treated with a lumpectomy and IORT? Anyone have any experience

Melissag41

thanks for sharing. I am heavily leaning to going flat.

Beesie

Pokemom, the issue is that radiation can't be given to the same area twice. So since the surgical choices are usually mastectomy or lumpectomy+radiation, mastectomy becomes the only option if whole breast radiation has already been given for a previous diagnosis of the same breast. In your case, I believe you said in your other post that the current area of concern is not just in the same breast but is in the same location as your first diagnosis - meaning if it's cancer, it's likely a recurrence vs. a new primary. If that's the case, I'm guessing that a MX will be recommended because the IORT would have been given to that very specific area. And with a recurrence, lumpectomy alone without rads would not be recommended. Just my guess though.

sjlewis73

It has now been almost 3 weeks since my surgery, bilateral mastectomy. The pain is bearable most days however, my skin stings. I still have 1 drain that is filling to about 30 ml each day and still waiting for that to be less so I can have it removed. They did not add the spacers at this time. Good news I am cancer free and no further treatments are needed! Wooohooo! Bad news is I have to wait until summer/fall for reconstruction and was told to lose weight. That was never mentioned before. I know it will only benefit me in the long run but I just feel like now that I am cancer free, I am put on the back burner.