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Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by elelizwel on Feb 3, 2019 7:23 pm

Hi, I am new to this group. I was diagnosed with DCIS, stage 0 on Dec.18, 2018. I need to have a mastectomy. I have questions about reconstruction. My plastic surgeon wants to put the spacer in at the time of surgery. I may need radiation after the surgery. I've heard that the radiation "shrink wraps" the spacer and may change it's form. It has been recommended to me not to wait till after the radiation to have the spacer inserted. What are peoples' experiences with radiation and the spacer. Will I have problems afterwords injecting saline into the implant at a later stage. Will it damage the spacer?

I believe that inserting a spacer and then subsequent implant would be very difficult after radiation because of the integrity and malleability of the skin. I don't even know if that is an option or do people have only homologous transplants after radiation if no implant is initiated. The homologous route is contra- indicated with me because of significant risk factors.

Any opinion or experience would help. I do not have invasive cancer but the cells which are there are at a late stage and there are two types of cells involved throughout the breast.

Thank you, elelizwel

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by Brighty on Feb 3, 2019 9:22 pm

elelizwel‍  Welcome to Cancer Connection!       I'm sorry you have to be here, but you will find many amazing  ladies on here who share your experience and will be able to advise you.       I'm going to tag Minus2‍  Dielle‍ Kims1961‍  ashcon‍  and cancertakesflight‍  who will be able to share their experience with you and answer any questions you may have.       

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by elelizwel on Feb 3, 2019 10:41 pm

Thanks, appreciate that very much. Will be clarifying the reconstruction with my plastic surgeon this Tuesday.

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by cancertakesflight on Feb 3, 2019 11:18 pm

elelizwel‍ Welcome to the site. I was diagnosed with breast cancer in 2011. My initial diagnosis was DCIS and then when I had an MRI biopsy they discovered some tumours within the DCIS. Ultimately the spread of the DCIS was over an even larger area than expected and the tumours found resulted in a diagnosis of Stage 2b. There was cancer in two of my sentinel nodes, so I ended up having surgery, chemo, and radiation. 

Prior to my mastectomy, there was no discussion about me having both breasts removed or anything to do with reconstruction. I'm not sure why that is. There seems to be differences in approach between doctors and hospitals. My friend had a double mastectomy and expanders were put in during that surgery. She ultimately ended up needing chemo and radiation. Setup for radiation was a little more difficult with the expanders and the exchange was too soon after radiation (before the skin fully recovered) and she ended up having multiple surgeries. With the various delays, she had the expanders longer than it was originally thought it would be. Everything is fine now. 

I went to see a plastic surgeon years after my last active treatment. She would not do implants for me because of the size of my other breasts. She said it would be too heavy for my skin, especially after the radiation. She would have done the diep surgery (removed fat from my abdomen and create a breast. The problem was that I had too many issues even outside of breast cancer (weighed too much, epilepsy, problems with blood clots) that I decided to forgo reconstruction. 

I would also suggest that you get a clearer picture of your options. A second opinion may also be useful given the differences I've noticed between doctors and hospitals.

cancertakesflight (Debbie)

 

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by elelizwel on Feb 4, 2019 12:44 am

Thanks Debbie for your quick reply and for telling me about your experience. It is a difficult journey no doubt about that. I wonder if you could still have implants if you wanted to. It's pretty awkward for me to ask for a second opinion as my surgery with this doctor is coming up on Feb. 20. I believe he will do the right thing but we do need to clarify whether he intends to do one stage o r 2 stage implants. I'll be seeing him Feb. 5. and since you told me about having the permanent implant too soon after radiation, I will take my time. Take care and I wish you good health. Thanks again, (Eleanor)

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by Dielle on Feb 4, 2019 10:50 am

Hi elelizwel‍, welcome to the site.

I had a mastectomy with a tissue expander, went through radiation and I just had my implant exchange surgery a little over a week ago.  So far I am healing well and the plastic surgeon was pleased on my first followup.

Radiation does throw a wrench into the mix and increases the chance that an implant will fail because of encapsulation or scar tissue.  That is the reason many surgeons will recommend doing the reconstruction with tissue instead of implants but implants are still possible .  I was told with the 2 stage reconstruction that even if radiation did some damage the surgeon might be able to repair it while placing the permanent implant.  I had a few fills before radiation started - they wanted to get the healthy skin expanded as much as possible before radiation.  And then the expansions started again about a month after radiation ended.  The expansions can be quite uncomfortable for a day or two after - take some Tylenol before going in and don't plan on anything that requires heavy breathing for a couple of days.  I was given instructions for how to massage my breast to move the expander around to avoid it becoming encapsulated.  I will have to do that with the implant as well.

I was told I had to wait at least six months after radiation ends to have the exchange surgery.

All in all my 2 stage reconstruction has gone well.  I'm sure your plastic surgeon will be able to  answer all the questions you have.

Good luck!

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by elelizwel on Feb 4, 2019 2:18 pm

That was a great response Dielle‍ . Just the kind of thing I was wondering about. How the skin reacts with the expander and radiation and how often you need to go in and get the implant filled. Also how much pain there would be. I wondered what the timeline was going to be for me. I know it is going to be different for everyone. Just wondered, would I be looking at a year or two years? Just an average? Thanks so much for answering me quickly. I hope to be able to give back as well any way I can. El

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by Dielle on Feb 4, 2019 8:10 pm

I'm so glad you found this helpful, elelizwel‍.   I had the expander filled every 2-3 weeks.  the number of visits you have depends on the size (they want to fill it to a volume that is a little larger than your natural breast).  I did not find it that painful until the last couple of fills -it felt like a weight in my chest and hurt when I breathed - but that only lasted a day.  The expander looks a little weird - it is more rectangular than round and at first it feels like an underinflated ball when you poke it.  When its filled up it is quite hard, like having a softball strapped to your chest.  It is a little uncomfortable to sleep on so I stopped sleeping on that side.

But as weird as it looked, at the time it was comforting coming out of my mastectomy with a breast and my own nipple.  Now that I have my implants (I had a balancing on the other side as well)  I am excited to see how my new body will look.  It takes a few weeks for the implants to drop but already it looks more natural than with expander.

I've been to a Bra Day and saw some women who had the same procedure and they looked fantastic. 

Let us know what you find out in your appointment.

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by elelizwel on Feb 4, 2019 9:49 pm

Ok, will do. Thanks Dielle!

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by Sam67 on Feb 11, 2019 4:25 pm

So glad to see you ask this question. I just got back from my appointment with my plastic surgeon about my bilateral mastectomy and expanders placement that will happen later this month and had questions that I see some answers to from others here. I was told that expanders are a better option with radiation so that the implant may move due to the skin getting very tight and with the expanders you don't have to worry about that. 
I was told that the expanders would be filled quickly before radiation so that the skin will not be too tight for inserting later implant. It would be 3-4 injections to fill expanders. I am not large chested and don't want to be any bigger when this is finished. 
I hope that you and I both have successful surgeries this month. 

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by KathyH on Feb 12, 2019 5:48 am

Question:  If you are having one breast done would this make the other look out of place?  Should you do both?  I"m not at this point yet, just doing chemo before surgery happens.  I have Ductal cancer in Right breast and will do a reconstruction.  I just have the sense to do both at same time and avoid any future issues.  This is all so new and I have not researched or spoken to anyone yet on possibilities.  But I feel that it may be the wiser thing to do.  Wondering what everyones thoughts and experiences have been.

Thanks,

Kathy

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by Minus2 on Feb 13, 2019 5:51 am

Hi KathyH‍ , 
When I was diagnosed in May 2016, I had DCIS in both breasts plus a 2.0 cm IDC tumour in the right.  So, I had to do something with both breasts.  My surgeon's recommendation was bilateral mastectomies with immediate implant reconstruction.
In my case, the cancer was caught very early - Stage 1A- but the DCIS was more extensive on the right side and it was more advanced because it was invasive.  The cancer on the left side was still confined to the ducts and was very small.  In many ways, the timing of my mammogram was almost perfect because the IDC on the right side had just invaded beyond the duct wall and the cancer on the left side was just large enough to be visible on MRI.  Very dense breasts made my imaging very difficult to read. Any sooner, and it potentially would have been overlooked and my treatment plan would have been very different - single mastectomies spaced a year or two apart.
Statistically, the risk of developing cancer in the second breast is very low, but in my case, the statistic was a reality as I did develop cancer in both breasts. I can't imagine going through the imaging and diagnosis and treatment on one side only to have to repeat the process again shortly after.  It's a very personal decision that needs to be well thought out, but even if the cancer had only been on one side, I would probably have advocated for both breasts to be removed.  I am terrible at waiting for the other shoe to drop.  
I am tagging Kims1961‍ and ashcon‍ to share their stories with you as they also had bilateral mastectomies.  
You indicated you are having chemo and then surgery.  Do you have an idea of when your surgery will be done?  And do you have a good relationship with your surgeon?

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by ashcon on Feb 13, 2019 11:41 am

Hi KathyH‍ 

I had a prophylactic bilateral mastectomy, but unlike you and Minus2‍ , I did not opt for reconstruction; I am "flat". 

You ask a good question about doing the left breast at the same time as the right in order to, as you say, ‘avoid future issues’. One thing to consider while weighing this decision is what future screening looks like for you based on one reconstructed breast, or two. From what I’ve heard,

If you had a breast completely removed (mastectomy) and reconstructed, future screening mammograms on your reconstructed breast (or breasts) are not needed. Currently, there is no data to support the value of routine screening mammography after mastectomy and reconstruction — whether you had an implant or flap reconstruction. (The only exception is the use of MRI screening to detect possible rupture of a silicone implant).


Would you have peace of mind knowing that you would no longer be getting mammograms on the breast(s) that have had reconstruction?

FYI: There has also been some talk lately about newly-realized risks associated with breast implants. See this article that just came out yesterday, Feb 12, 2019:

Health Canada: Safety Review of Breast Implants

The good news is that you have some time to do some research, talk to a few experts, and make a decision that you know is right for you.

When do you start chemo?  When is your surgery targeted for?
 

Re: Just diagnosed with DCIS in one breast. Only surgery option is Mastectomy.

Posted by KathyH on Feb 13, 2019 8:26 pm

Thank you all for the wonderful information.  So much to consider and think about.  My surgery won't be till chemo is complete.  I just finished my second round of chemo and am at the hair falling out in large amount phase.  I really didn't think that would bother me as much as it is.  All I know at this point is, I don't want to go through this again.  So if doing both breasts at the same time can prevent that, maybe that's the way to go.  Its all really quite overwhelming, so much to consider.  You women have been a tremendous support, your information, and insights help a lot.  I have 16 weeks of chemo so surgery approx June, then 5 weeks of radiation after that.  It will be a long year of going through this process.  

Kathy

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