Women Who Were Diagnosed With DCIS Currently & 5 to 10 Years Ago (Your Experience & Decisions)

I am much older than you, and so my choices and experience might not help. 

I opted for a double mastectomy, although the cancer I had on one side was barely discernable (Stage 0).  I had no real choice about what to do about the other side (Stage 3A).  I chose this action because I did not want to have to mess with all of this more than once, if possible.  After my surgery, my doctor told me I made a smart choice.

Before my surgery, my oncologist had already strongly suggested radiation therapy.  The pathology report, showing a lymphnode affected, meant I should go ahead with the recommended chemo.  I did four rounds (every other week) of adraimycin and cytoxin and then four or taxol.  It was do-able.  I tended to see that my down time came about four days after my infusions, but did not last long.  My "anti-puke" drugs worked, and I had no more than a bit of queasiness those down days, just with the AC but not with the Taxol -- I did not take those meds when I was on taxol.  However, my breathing was somewhat affected -- not sure what all contributed to that.  My onc suggested an allgery pill for the days I was really bothered.  Those days tended to be about 10 days after my taxol infusions and cleared right up when I took the allergy pills for a few days.

With the chemo, I managed to avoid being housebound.  I did not go to work, only because I worked with young kids (school) whose parents send them to school, even when they are sick.  The weekend after my second infusion, my husband and I traveled about 400 miles each way to my family reunion.  I fared well.  Ten days after I finished chemo, we took another trip, almost the same distance.  That went well, too.

As for radiation, that was do-able.  I did resume work that September, but only went in half days because of what time my appointments were.  I had a little problem with burns, but not enough to put me off schedule.  With a little extra attention to the area, I healed quickly.

I think a lot of how we manage all of this has a lot to do with how we are physically.  I do not have things like allergies, which I think can have an impact on something like this.  I also think our mental state helps as well.

I chose to aggressively tackle my disease because, as I said before, I did not want to have to do it again later -- if possible.

Hope this helps.

Hi dlaw1.  I'm both currently diagnosed (4/2015) and past (2009)!

I had a DCIS diagnosis in 2009.  It was ER/PR positive, high grade (aggressive) but small, only about 9mm. I had a lumpectomy and brachytherapy radiation.  On my 6 year anniversary mammogram, another small spot of DCIS was found, even higher ER/PR positive, intermediate grade, 13 mm.  The "standard of care" is that a mastectomy is called for if a breast has been irradiated once.  The tissue couldn't take it again and would die (ugh).  But because I did not have whole breast irradiation in 2009, I fought for having a second lumpectomy with efforts to remove the previously irradiated cavity.  MD Anderson at first said they would go along with that, then said no.  So I went to Cancer Treatment Centers of America in Chicago and they did my second lumpectomy on the condition that I would agree to whole breast irradiation this time.  That breast was also "reduced" at my request, when the surgeon took out the cancerous "area" (couldn't see the DCIS on the pre-op mammogram -- at that point it was 3 months past the initial discovery) as well as any tissue that may have been irradiated in 2009, tissue that was hard (I had a big seroma all those years where the lumpectomy cavity had been) or scarred.  I had "macromastia" and had plenty of breast tissue to do all of this AND still have a reduction.  However, part of the reduction scar did not heal well and I had to pack an open wound for 4 months to get it to heal.  This delayed healing was probably due to the prior radiation affecting circulation in that area.

The other breast had to wait for its reduction until after radiation since that process shrinks and sometimes hardens tissue.  However, I asked for the Oncotype DX test to be done on the pathology sample first.  The test showed that I would not benefit much from radiation. So I decided not to have it done and proceeded with the contralateral breast reduction on November 5.

If your DCIS is intermediate grade or lower and your Oncotype DX result is a low score, you may be "overtreated" to have a mastectomy and radiation.  That's a lot of money, pain, drugs, surgery, and "down time" that you may not need, not to mention the side effects of all of those things.  Please read about the overtreatment of DCIS before you make your decision.  It sounds like you'd rather avoid overtreatment and side effects if you can.  In some cases, it is reasonable to do less and be more watchful. I don't want to die of breast cancer metastises but neither do I want to live with searing arm nerve pain, fear of lymphoma, brittle ribs, heart and lung disfuntion, numbness of my chest and underarms, not to mention large scars when my DCIS may not ever spread.

~~Connie~~

breastcancer.org is another great website to use. It is only for breast cancer. There is a forum just for those who have or had DCIS. I highly suggest you check that site out, as there are women who are posting here that had some invasive component in their breast cancer. DCIS IS NOT invasive, so it is a little bit different.  join breastcancer.org and look for the DCIS section. You will find lots of good information there and more women with just DCIS. I use both sites

dlaw1 said:

DCIS Response-Connie

Hello Connie,

 

I appreciate you sharing your experience and valuable information. This has really helped me a lot. My concern is recurrence and I want to be smart in the decisions I make. The suggestion of the Oncotype DX test is a great and glad you mentioned this to me. It is crazy, I was not even offered this option…only the BRAC and I didn’t realize that there was a test that could determine whether or not if radiation would even be beneficial or not in my case.

Was your DCIS recurrence found in the same area of the breast; as some doctors claim it can or was basically in a totally different area from the original area you had your first lumpectomy? My DCIS was like 1mm or 3mm (the way it was explained it was mixed in there) and attached to the pre-cancerous cells the first time around.

 My doctor was talking about potentially 33 treatments/whole breast radiation for about 6-7 weeks (10-15 mins)? I am concern with the side effects and the damage this can cause in the future. I have also been researching breast thermal and believe I will make this a form of my breast preventive care and have read into this a lot to compliment my mams. My naturopathic physician suggested this as well because the studies shown that radiation from the mam machines is still not good to do on a regular basis and many don't know of other alternatives ways to maintain proper breast health.

Basically, my doctor’s current plan of action/thoughts if I go the route of not getting radiation or include radiation in my treatment plan; I will need to go get a mam/ultrasound every 6mos and an MRI annually for the next 5 yrs. Then I will graduate to annual checkups. If I get mastectomy, I still will be monitored but I only have to do a MRI annually and I would make a good candidate because I can spare my nipples because nothing had spread.

That is crazy in reference to the seroma. Had you noticed any pain prior or discomfort before finding this out?

I read all of the issues you were having in the healing process as well; which my doctor did mention that in the event that I was to go the radiation route it would make it difficult for any form of surgery such as a mastectomy once the breast has been radiated. In the end you are right, you don’t know if the DCIS will form again or ever become more, but I feel like I am at fork in the road and have been given this opportunity with this early detection to possibly change the cards. Which makes the route to choose challenging because you really don’t know the future. I am so thankful to have people I can discuss experiences, opinions and suggestions with. I appreciate you all who responded back to me.

 

 

Thank you and I will keep you all in my prayers

 

RE: seroma      I had a LOT of pain and a hard lump, which was the seroma/fibroid tissue.  Mammograms never hurt until they compressed that breast and seroma!  Now it is gone, no more pain.  Yay!

RE: location of second DCIS       In 2009, after the lumpectomy, the anterior margin tissue shaving had a speck of DCIS in it.  In fact, after the biopsy the month before, that is the area that still showed one speck of DCIS.  In other words, the surgeon got that final piece of remaining DCIS in the margin shaving tissue.   So, JUST BARELY.    In 2015, the recurrence was "at the anterior aspect of the prior lumpectomy cavity."   My theory:  there was some more, not visible, cells of DCIS a little further down the duct. The first surgeon took 10 centimeters (not millimeters) of tissue but IN THE WRONG DIRECTION.  the second surgeon also went the other direction (toward my chest, not toward the nipple) in order to take out the old lumpectomy cavity, but the plastic surgeon took a lot more, in all directions.  So I hope it's all gone now, never to develop anywhere else.

Tell us how things are going!

~~Connie~~

jenny57 said:

DCIS

Hi I was 54yrs old when I was diagnsed with late stage DCIS her negitive 2.

I had my lumpy done on the right side of my breast in December 15th 2011 and my lymph nods removed in December 30th 2011.

When I started chemo therapy in 2012 my husband thought it would be a good idea for me to try medical cannabis because I was having nausa from the chemo and for my radiation therapy too. I did try taking the anit hormone pills but they gave me extreme bone and joint pain and super bad hot flashes and nause and those pills made me feel like I was 190 year old lay that was super crippled. And it also made me feel like I was dying too.

I chose to go off of the anti homrone pills because I just wanted my quality of life back too.

Since my mammograms and pet scans and ct scans my doctors have told me from the Knight Cancer Institute that as of this last June I am full breast cancer remission.

This is also because I hve been staying strong and positive in a good way and also because I keep my fatih in god too.

And I remember the last week I had chemo therapy someone told me at chemo therapy that god in on your side no matter which chocie you make he is there for you! So this helped me out a lot! Because after I found out that I got cancer I was really scared! But I haven't been ever since a women I met told me that god is on my side no matter which chooice I make he is there for me!

 

 

 

 

 

I was diagnosed with grade 2 DCIS, clear margins. Estrogen and Progesteron positive. The cancer was 6mm. I had a partial mastectomy on December 10 because of a core biopsy which showed atypical ductal hyperplasia. The DCIS was discovered with the partial. 

I've been reading a lot of studies since my diagnosis, trying to figure out what to do. My docs -- all high-powered specialists -- have done everything they can to convince me to opt for 6 weeks of radiation and hormone therapy. But I have severe asthma and a history of repeated pneumonia. When I learned -- from ny own reading, not from my docs -- that the radiation would also hit my lung, I decided against radiation therapy. The docs admitted the radiation would hit my lung, but pooh-poohed my worries. However, they don't know or appear to care about my medical history. They are basing their recommendations entirely on studies and statistics of lots of people with all sorts of medical histories and situations. Last week I learned from my oncologist -- after I pushed her for the truth -- that if I have a double mastectomy, I can be free: No rads, no hormone therapy. Nothing. Nada. Zip. I can walk away.

When I said I wanted the double mastectomy and my freedom, everybody went ballistic. The radiologist -- another appointment, the same day -- went over the top, even told me he'd never had one single patient who had problems with lung damage. That was an obvious lie and I'm through with him. In fact, I through with all my high-powered specialists at the NIH center. 

Talking to them is like talking to a bunch of bookies. All they do is quote statistics, and they misapply what the statistics mean in a preposterous manner. They don't even read my chart. First, they made me feel likel I was a disemobodied cancer in a petrie dish, not a woman with a complex medical history and lifel considerations. Now, they've made me feel like all I am is a set of variables in a spreadsheet. I have never -- not once -- had the impression that their recommendations were about me or that my health was the consideration. I felt from the get-go that this was about internal medical politics and had nothing to do with me.

But when they lie to me ... I'm out. 

I cancelled my Monday's appointments with them and called and made another appointment with an oncologist and breast surgeon closer to home. (I was traveling 200 miles to go to the NIH center because I thought they were the best.) 

Bottom line: Unless somebody gives me reasons that have something to do with me, my life, my health to do otherwise, I am going to have a bilateral mastectomy. I don't want any of the cheese. I want out of the trap. 

sgraves68 said:

lobular breast cancer

just got through with chemo treatments and will have surgery of right breast end of this month or first of Feb why was chemo given before surgery my scan came back good so why surgery?

I had chemo before my surgery too. They do it normally to shrink tumors. My surgeon explained that it is like when you have a pimple. It is easier to remove if you shrink it dry rather than when it is all inflamed. That way, they have a better chance of getting it all out during surgery and then you have clean margins. It worked for me. Good luck, Anna

oklabecca said:

DCIS. Diagnosed Dec 16, 2015

I was diagnosed with grade 2 DCIS, clear margins. Estrogen and Progesteron positive. The cancer was 6mm. I had a partial mastectomy on December 10 because of a core biopsy which showed atypical ductal hyperplasia. The DCIS was discovered with the partial. 

I've been reading a lot of studies since my diagnosis, trying to figure out what to do. My docs -- all high-powered specialists -- have done everything they can to convince me to opt for 6 weeks of radiation and hormone therapy. But I have severe asthma and a history of repeated pneumonia. When I learned -- from ny own reading, not from my docs -- that the radiation would also hit my lung, I decided against radiation therapy. The docs admitted the radiation would hit my lung, but pooh-poohed my worries. However, they don't know or appear to care about my medical history. They are basing their recommendations entirely on studies and statistics of lots of people with all sorts of medical histories and situations. Last week I learned from my oncologist -- after I pushed her for the truth -- that if I have a double mastectomy, I can be free: No rads, no hormone therapy. Nothing. Nada. Zip. I can walk away.

When I said I wanted the double mastectomy and my freedom, everybody went ballistic. The radiologist -- another appointment, the same day -- went over the top, even told me he'd never had one single patient who had problems with lung damage. That was an obvious lie and I'm through with him. In fact, I through with all my high-powered specialists at the NIH center. 

Talking to them is like talking to a bunch of bookies. All they do is quote statistics, and they misapply what the statistics mean in a preposterous manner. They don't even read my chart. First, they made me feel likel I was a disemobodied cancer in a petrie dish, not a woman with a complex medical history and lifel considerations. Now, they've made me feel like all I am is a set of variables in a spreadsheet. I have never -- not once -- had the impression that their recommendations were about me or that my health was the consideration. I felt from the get-go that this was about internal medical politics and had nothing to do with me.

But when they lie to me ... I'm out. 

I cancelled my Monday's appointments with them and called and made another appointment with an oncologist and breast surgeon closer to home. (I was traveling 200 miles to go to the NIH center because I thought they were the best.) 

Bottom line: Unless somebody gives me reasons that have something to do with me, my life, my health to do otherwise, I am going to have a bilateral mastectomy. I don't want any of the cheese. I want out of the trap. 

Please please please ask them to do an Oncotype DX test on your DCIS pathology specimen.  When I did that for my DCIS, intermediate grade, it came back showing that there would be little benefit for me from having radiation... SO I DIDN'T NEED TO HAVE RADIATION DONE! Six years ago when I had my first case of DCIS, this test was not available except for invasive tumors, which DCIS is not.  Now it is available for DCIS.  Please ask!

~~Connie~~