DCIS - Overwhelmed with info and emotion

SueHB

Hi All,

I am 48 years old and have been diagnosed with DCIS stage 0 Intermediate grade a few days ago. Only treatment is mastectomy according to the BS as its quite spread out. So I have opted for mastectomy, immediate reconstruction with implants (a 2 step implant) Some have asked me to seek second opinion but I reckon the results will be the same so I don't want to 'waste' time booking appointments etc. I have read so much past few days and I am overwhelmed and am very depressed too. I worry about the surgery, the recovery period (as I have a school going child and I have no immediate family to take care of me), the complications with multiple surgeries etc. I am still trying to identify my depression whether its due to the fact that I have pre cancer or losing my breast. Just looking for support here, thanks!

Moderators

Sue, we are sorry you have to be here for this reason, but wanted to send you a warm welcome to the BCO Community, we're glad you found us!

We know the first days and weeks can be really scary and confusing, but take one step at a time and things will start to get better. You'll find wonderfully supportive people here that will help you along the way. Please, let us know if we can help you get any further information in our main site or the discussion boards. For now, we thought you may be interested in the following section of our main site: Mastectomy

Good luck with surgery and remember, we're all here to support you!

Sincerely,

The Mods

Ingerp

I don’t know how large your DCIS area is compared to breast size, and I’m not a big fan of second opinions but in this case I’d strongly consider it.For my 2016 DCIS I had an area that was 8cm x 6cm x 3.3cm excised. As one friend pointed out, that’s bigger than a deck of cards. I have a shark bite out of that breast but never considered mastectomy. That when combined with reconstruction is a big surgery with a long recovery. You might at least talk with your BS about conserving the breast or even seek out another opinion.

SueHB

Thanks Mods and Ingerp for the replies. I have an appointment tomorrow with my BS so I will find out how scattered the DCIS is on breast. I will also try to get to see another doctor for second opinion. It was probably a shock to me as I have no family history of breast cancer. But I am glad to have found this supportive group. Thanks again!

Beesie

Sue,

Have you had an MRI? My diagnosis came through an excisional biopsy (surgical biopsy) because the original needle biopsy found ADH and my surgeon recommended excision, just to be sure that nothing more was hiding in there. I had two areas of calcifications, and both were removed during the excisional biopsy. Both areas were high grade DCIS, and one area included a 1mm invasive cancer, so officially my diagnosis was DCIS-Mi, which is the earliest Stage I breast cancer. Unfortunately although a lot of breast tissue was removed during the surgery, there were no clean surgical margins. Based on that my surgeon believed that there likely was a lot more DCIS still in my breast, and he recommended a mastectomy. I didn't want the mastectomy, so I went for a second opinion.

The first thing the second opinion surgeon did was send me for an MRI. The MRI showed that my breast was full of "stuff". That was the word he used, because he couldn't say for sure whether the "stuff' was more DCIS or something benign. But I knew that the "stuff" mostly likely was more DCIS, and that convinced me to have the MX. This surgeon was actually willing to attempt a re-excision lumpectomy, but warned that the odds were high that we wouldn't end up with clean margins. With the MRI results, I decided to skip that step, and I went straight to the MX. Turns out that all that "stuff" was more DCIS (the final count was over 7cm of DCIS in a small breast), so it was the right decision and in the end, the only viable surgical option.

All that to say that for me, the second opinion was very helpful. If the MRI had not shown much, I would certainly have attempted the lumpectomy, but instead, the MRI helped me accept that a MX was the right choice.

You may have already seen these, but if not, here are a couple of links to other threads in the DCIS forum that might help you understand your diagnosis and the options:

Topic: A layperson's guide to DCIS

Topic: lumpectomy vs mastectomy - why did you choose your route?

SueHB

Thanks Beesie for the reply.

I had my first mammogram done 4 years ago and she requested me to do another one for the left breast. She has nothing to compare so she cleared me and asked me to come back in 3 years time. Unfortunately I only did the current mammogram after 4 years and after comparing both, there are more calcification spots and have become clustered. Then I did my biopsy and confirmed DCIS intermediate grade. I also went for MRI and BS told me that the only option is mastectomy as its quite scattered. I have not seen my report yet. I tried calling for an appointment with another doc but the only available slot is one month away. I didnt want to wait and be miserable for another month. I was also thinking even if the second doctor said no need to do a mastectomy, will I be forever worrying about what ifs and when. I know all these facts but I am not ready emotionally and having a hard time trying to accept it. Hopefullly it gets better.

Thanks for the links too!

Salamandra

Hey SueHB,

This stuff is so hard mentally and emotionally. Your cancer center may (should) have a social worker and maybe even a psychiatrist on staff. Be assertive and get yourself in to see them! You don't have to carry this all alone.

If your cancer center can't help you, keep looking. One organization that I used that had a social worker for me that was very helpful and supportive was Sharsharet. It's a Jewish organization but they serve everyone. If you leave your email/phone, a social worker will contact you. But there are many other organizations like that.

Social workers can be a great listening ear, but so much more too. They know or can find out about organizations that can help you with the logistics, care taking, or finances of breast cancer. They can help you get paperwork and file applications. They can find support groups. They can support you advocating with doctors. And more.

SueHB

Thanks Salamandra for your reply. I will better soon, just need to keep reading! Thanks for your support!

SueHB

Hi All,

Just a short update. Well, one of the nurses told me that my doctor has tendered in her resignation and I wasn't comfortable that she didn't tell me. Was wondering why she kept pushing me to do the surgery the next few days. I went for a second opinion with another doc in the same hospital today. So, I wasn't given a choice, its mastectomy on the left breast as my DCIS area is at 12 o'clock, close to my collarbone. Cant do lumpectomy as I have a small breast and she will have to take a big chunk out. Before I could ask her any questions, she has told me all the answers. I guess its 'easier' to decide when you have a good feeling about the doctor. She also said do not leave it as its not worth the risk IF I have deal with more stuff later on. I will have another appointment with the Plastic Surgeon tomorrow.

So in short, please GET a second opinion!

Hugs to everyone here.

Ingerp

Sue--good to have the decision behind you. Now you can steel yourself to move forward.

MBPooch

Sue - I had small breasts and had gotten implants so when I got my diagnosis of DCIS and pagets a year and a half ago I also didn't have much choice but to have a BMX. I was of the decision to do a BMX almost immediately for more piece of mind but was also offered a BMX with direct to implant. Meaning that the BMX and implants would occur during the same surgery. It was motivating to wake up with breasts similar to what I had. Not sure if that would be an option for you but maybe something to ask during your appointment tomorrow. My recovery, was surprisingly not that bad, better than what I had anticipated. Thinking of you, please keep us posted!

LisaK12

I agree with MBPooch -- it is worth finding out if you might be a candidate for direct-to-implant rather than 2-stage reconstruction. And consider looking into the pre-pectoral option rather than sub-pectoral (to avoid potential animation deformity). Good luck to you.

SueHB

Thanks MBPooch and LisaK12 for the replies. Yes, I am doing direct to implant as my BS told me there isn't any need for more surgery. The PS will put the implant "behind" my pectoral muscle. My surgery is schedule this Thursday and I am freaking out! Am waiting for calls to go in for blood test and stool test as well as I have been having diarrhoea for the past 5 days, could be due to anxiety! It didn't help after hearing out the possibility of complications with the surgery and post surgery. I should feel 'better' after the surgery! Thanks!

Debsauga

SueHB, this is the club no one wished to join. So sorry that you have to be here. It seems you have a plan already, goodluck with it all and hopefully the surgery goes well and your recovery is smooth.

SueHB

Thanks Debsauga for the reply. I am just two weeks post surgery. Recovery is 'do able' but its really, really tough. Hopefully will get 'there' soon!

MBPooch

SueHB - Was thinking about you. Hopefully you'll be feeling better soon!

SueHB

Thanks MBPooch for the wishes! Drain is out and now just dealing with pain and getting used to the new breast!

IBJUSTFINE67

SueHB, I am on my 4th week post surgery and had the same surgery but with nipples removed and implants over the muscle. I had a tricky time the 3rd week even though I finally got my drains out! I did the exercises too soon and now that I have tested my girls, I feel so much better...just wanted to put that out there...I paid the price of doing too much. I just hope you are doing ok. I had good and bad days and was just searching for people who "got it".

SueHB

Hi IBJUSTFINE67, I hope you are doing well now. Its been two months since my surgery and like you said, bad days (throbbing pain that comes and goes) and good days (not realising the perky breast is there!). I did the usual recommended arm exercises throughout, some part of the scar didn't heal well as I pushed myself a bit too hard without realising it. I only started slow walking on the treadmill, swimming and pilates after six weeks. It was tough the first couple of times (swimming and pilates) but it gets better. Take care and hope your recovery will go smoothly.