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Question about follow-up after DCIS

Posts: 24
Joined: May 2002

HI. I'm 6 months out from mastectomy for extensive DCIS ( nodes 0/2). Have not been able to find much info about follow-up for DCIS once the surgery's done. Can any one advise me? I don't know what to expect from my Docs. I see my plastic surgeon often with onging reconstruction but not the internist or general surgeon. I have found a lump next to my trachea that I will take to my internist this week - sure hope it's not a problem. So glad I've found you all and know that none of you will say " Aren't you over that YET?" Thanks. Julie

Posts: 931
Joined: Oct 2000

Hi Julie. I had DCIS Dx in July 2000. I had a mastectomy with immed. Tram Flap reconstruction. I have had 5 other surgeries for recon. I'm now 20 mos. out. I see the general surgeon every 6 mos. I see the Plastic Surgeon quite often but this will slow down soon as I think I'm done with recon.(I hope I'm done!) I also have a mammo and Ultrasound 1 time a year. I also see my opthomologist yearly(to monitor my vision)and Gyno. every 6mos to monitor uterous and endometrium as I'm taking Tamoxifen for 5 years and endometrial cancer is a side effect. So far so good! I have had a few times I've felt something or seen something and thought I'd had cancer again but everything has been ok! Good luck with your "lump". Keep us informed. If I can be of anyother help, please e-mail me here or at RPT1206@aol.com HUGS!! Cathy

Posts: 173
Joined: Mar 2001

Hi Julie,

Each doctor is different in exactly how they follow-up, but usually you see your surgeon every three months for awhile, then every 6 months for awhile and then yearly. My one piece of advice is to keep seeing your surgeon yearly, even when it doesn't seem like it is necessary. When you have concerns, like the lump you found, have them checked out. Just like the other Cathy, I have found lumps, etc and they turned out to be nothing, but it is better to know for sure. Right now, you may feel like you worry about every little thing, but believe me, you will relax and get back to a more normal lifestyle. I had my mastectomy in Jan 1990. My reconstruction took three years to complete, because I had some complications, so I was ready not to see the doctor so much. My cancer did recur and would have been caught sooner, I think, if I had been seeing my surgeon all along. My internist wasn't looking for cancer, especailly since it didn't recur in the other breast. My surgeon would have been. Of course, I changed internists right away. Just listen to your body , get your check-ups and eat healthy. Do what you can do and be happy. You never get over "THAT", you just go beyond it as best as you can.

Hope this helps.

God Bless,

Posts: 321
Joined: May 2002

Hi Julie,just wanted to let you know, I had DCIS this second time around, had lumpectomy, radiation and now I am undergoing chemo therapie. Maybe your doctor feels you do not need adjuvant therapie. I opted for it because of BC in my other breast which is of course history and I am now "high"risk.Hope this helps, I hope the lump next to the trachea is not a problem for you, I will say a prayer for you and wish you the best.Hugs Emmi

Posts: 321
Joined: May 2002

Its me again, forgot to tell you, like Cathy and Kathy, I see my surgeon every 3 month, my internist 3 month. Gyn. once a year, mammo once a year .I am sick of doctors but it has to be. We have to take it into our own hands and make sure all is followed thru.The more WE know, the better of we are.

Posts: 46
Joined: Dec 2001

Hi Julie,
I was DX'd with DCIS and LCIS in Sept 2001. I see my surgeon every six months, my oncologist every 3 months, my Gyn every year. After my one year mark from my double mastectomy (Oct 22), I will see my oncologist every 6 months and my surgoen once a year. After two years, I see the oncologist once a year.
I hope the lump is nothing to worry about. Keep us posted!!!

Posts: 1
Joined: Jan 2017

Has anyone here NOT done reconstruction after mastectomy?  I am undecided and wonder about people who have had one after DCIS and opted against reconstruction.

Also, has anyone decided to do recon AFTER the initial surgery or does that decision have to be prior?

Posts: 2
Joined: Jan 2017

In September, I had mastectomy with sentinel node biopsy for DCIS on biopsy, and mastectomy pathology found both DICS and LCIS components.  Sentinel nodes were negative, and I had stage zero.  I elected not to have immediate reconstruction, as I was undecided at the time and was not sure that I might need radiation, etc. but didn't need any further treatment.  I'm still on the fence as to whether or not I will have reconstruction.  I'm also contemplating having the other breast removed to reduce my risk of cancer and to avoid having to take anastrozole for prevention as this medication was recently recommended by my oncologist.  I'm just not sure I want to take that medication and deal with the side affects.  I'm doing well post surgery, 3 months ago.  I have not seen a plastic surgeon yet, but due for follow up mammogram of the remaining breast in March, and will see the surgeon in follow up at that time, and may make some decisions at that time. 

Posts: 1191
Joined: Dec 2010

Hi momtchr, I had DCIS and precancer in my right breast but for other reasons (somethign showed up on the MRI) I had both breasts removed and I did not do reconstruction and am happy with my decision. If you have anymore questions ,please send me a private message on here!

Posts: 6587
Joined: Oct 2010




Apaugh's picture
Posts: 574
Joined: Aug 2016

I am 54 and chose to go flat.  I dont regret it.  It is a huge weight off me physically and mentally.  It's a personal choice only you can make. 

Posts: 1
Joined: Feb 2017

I was diagnosed in December with DCIS only in left breast Grade 3 in 3 different areas.  I opted for bilateral masectomy with immediate reconstruction just last week January 25! I am in the midst of healing but am quite shocked it hasnt been as horrible as expected.  Mine was not hormone driven so no tamoxifin and the pathology just came back from the breast tissue as clear.  I know there is a long road ahead as far as the healing and reconstruction but I am almost worried that I wont have any appointments with an oncologist just 6 month visits with my breast surgeon for follow ups. Any thoughts?


Posts: 1
Joined: Feb 2017

I was orignally diagnosed in August 2010 with DCIS in the left breast Grade 3, multifocal.  I decided on lumpectomy and radiation.  My 6 year mamo in November showed a reocurrance of DCIS in the left breast Grade 3.  I had a bilateral mastectomy with reconstruction on January 23.  It has now been almost 4 weeks and I am astonished at how slow my recovery is.  I started this process with a great attitude and am losing some luster.  I have contstant pain, tightness and burning primarily on my left side.   Not sure if that's because I previously had radiation on the left.   I can't imagine returning to work in 2 more weeks.  I can't even put my arms over my head.  I'm trying to stay positive because I know there are many people who have a bigger fight.


Lisa-Nana to 5's picture
Lisa-Nana to 5
Posts: 16
Joined: Aug 2016

I'm on the way home from the hospital at this moment after having a repeat mastectomy. I had a bi-lat in 2008 from DCIS of right breast and reconstructed via latissimus flap and cohesive gel implants. Last August, i found a lump in armpit area of right breast(same side as before). I had to have the flap, implant and all skin removed because this time I had multifocal IDC. I was told I had a 5%chance of recurrence, 2% after 5 years. I was 8 years out! Please, please find a doctor who will take follow ups seriously even with DCIS. THIS DISEASE IS SO UNPREDICTIBLE! best of luck to you all. if you're the pray type, please mention me when you speak to God. Love and hugs! 

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