DCIS Stage 0 to Stage IV

i did the 5 day radiation - mammosite.. it was a breeze... didnt like the tube hanging out.. and mine burst but overall, no complications. good luck.....

Aelaine,

I was diagnosed DCIS Stage0 & had 3 lumpectomies before I decided on a mastectomy. I chose to do the other side too. Initially, it was supposed to be nipple-skin sparring but the DCIS was too close to the nipple & they took in surgery. The DCIS was 0.9cm. I am in the last stage of tissue expansion & will get implants in Oct. I know it is extreme but I am so happy I did & encouraged from picture gallery that I will look great in the end. I have total peace that I don't have to do testing anymore & don't have to worry it will come back. Mastectomy is not the end of the world if it ends up going that way, really. If you have any questions, feel free to private message me. Also, oncological surgeon suggested flax seed oil. How did the balloon go? How are you feeling? Did I get it right- you got shingles too?

Aelaine, Wow, that was over real fast. Amazing that balloon! Well, it sounds like for now you are at a good place. You've followed your Dr.'s recommendations and maybe now can get a little peace of mind. The whole diet thing....I don't know. I know I should eat better, but right now too busy. I've taken nutrition classes etc. and it's one thing after another....more fiber, less fat, more the right fat, less calories, less sugar....no! less artificial sugar! I give up for now!  Speaking of artificial sugar....I suffered for years with debilitating migraines and found I was extremely sensitive to Sorbital and other art.sweetners. It is even in toothpaste and when I went through Meningitis, I couldn't even use regular toothpaste without getting severe Migraines instantly. I've talked to many others who figured out the same thing, so maybe it might be something to watch out and see how your body reacts. I am not a dr. so only passing on what works for me if I am at the point where I can't take it any longer...Phenregan! It is used primarily to stop vomiting/diarrhea but it works. It is a last ditch effort though as it will make you tired. Many other studies I've read also say if you can take a quick nap as the symptoms come on, you can turn off the brain in a way to stop it. Lots of good migraine meds out there so ask your dr. if you haven't already. I'm passionate about it because it is so debilitating. My husband just read that on the list of debilitating illnesses, it was right after paralysis. I wish I knew more about tamoxifen and the ovary thing, but I'm sure there are lots others with great advice and things to consider. Wishing you the best, Hummingb1rd

Aeline, How are you doing?

Hi jennifer999,

I was in your shoes in February. Sounds like you have a good handle on things and a good attitude. Ask your doctor if radiation will disfigure the breast based on what they took and where. For some, none to little, for others, more. I was not told that it is difficult to have reconstruction on a radiated breast and wish someone would have explained that to me sooner. All that being said, lumpectomy with radiation is a great choice for sooo many ladies. My aunt had invasive cancer, had lumpectomy, had radiation and worked most of the time. She said it did not disfigure her at all and only felt a little tired at the end. There are lots of success stories and soon this will be over with. Best of wishes.

Hi Aelaine, I think you just have now named appropriately PTBD!!! Every psychologist and Dr. should get an update! LOL! Found PTBD funny but at times know it is really real.

So happy you do not need to take Tamoxifen. My Dr. did not recommend it for me either and was also happy about that. I'm glad to hear you are healing, although slowly and are processing everything like a normal breast cancer survivor. Just make sure you are looking at data on professional medical sites. There is a lot of misinformation out there.

I go through the same thoughts as you and have statistics and research in the back of my head. Funny, I went to Michaels too, yesterday and although I was aware of some minor Halloween stuff, I actually saw a huge cart full of pink, craft items for Breast Cancer Awareness Month. I hate Halloween except for the dress up part for the kids. 

It is hard to take captive of all those racing thoughts. When I get like that I either talk to ladies here or do something nice for myself. I try to celebrate how far I've come, and how lucky I am, especially at those times because they can just start a spiral of depression, which is exactly your point PTBD.  I guess it comes full circle. I was depressed earlier today and now feeling better. It's just the BC journey I guess. At some point, I guess I need to know I made the best decisions for me at the time and find peace with it. There are no guarantees.....in the news a few weeks ago, some disgruntled man shot and killed a young pastor at a church in town. He leaves a wife and six kids of which one is a few months old. I think after my exchange, I will feel like it's all over and hopefully move on. But, like you until then I still have choices to make and statistics to consider. We'll just have to help each other along. Best wishes!

Hi Aelaine, The PTBD has hit me the last few days. Such it goes.  I have a lot of other physical challenges on top of the cancer, and having company this weekend, just found out today. Lots of physical energy needed so keep me in your thoughts. 1000 places to go sound fabulous. My in-laws have the same book and have been loving traveling and checking off their list. That is a lot of wonderful places to visit over a lifetime...great attitude. How did your Dr. visit go? Ovaries? Keep in touch. Best wishes.

Hello to all. This is my first reaching out. I was dx with microcalcifications  R breast in 2/08 via steriotactic bx. I was lucky, no cancer. Was watched every 6 months with Mammo's. Another linear line of calcifications developed 4/10, next to the orginal calcifications. This took me to a core biopsy. Was dx with DCIS Commedo with necrosis, high grade, agrressive, and Atypical Lobular Hyperplasia. In 5/10 I had a 

   R breast lumpectomy with wire localization. I was seen by Radiation Oncology, and was not a candidate for Mammosite d/t the high grade. I had very large breasts DD's. The Con's of radiation won d/t wound complications and the general extent of area needing radiation, and side effects, and long term sides effects . I am 12 weeks out of BMX's/ L prophy. Incidental ALH found in L breast . Very rough time in surgery, bloodloss, needed narcotics reversed, hypotensive drips, albumin and blood transfusion. Developed Axillary Web Syndrome with Cording. And have been in PT/ Lymphedema for 6 weeks..... Am trying to land my body/ mind/ spirit. At the moment I have 17 inches of incisions healing. And I feel like hanging a blurb above my head " Just don't ask about reconstruction..... or prosthetics."  I have just returned to the world flat chested from the getgo.Sitting with Grief, which comes and goes....leaves me worn thin,confused, and no concentration. I look forward to the day I rise above all this. I did not want to be watched every 6 months anymore, and this decision for me was a no brainer.  Is there any where in here with a forum for BMX's optiong out of Reconstruction?

Thank you Jelson.

Tommorow I am pretty sure I will be set free from PT. Yey Me! I had NO IDEA that the rehab involved from BMX's esp with axillary incisions not r/t lymphatic issues/ SN would be Boot Camp and one of the biggest physical/ mental/ emotional ordeals to get thru. I would like to just put the idea out there for anyone having M's that, PT that specials in Lymphedema is the way to go. AND not all Drs. automaticaly give you Rx's for it. They told me just to " Climb the Wall" " Reach behind your Head" and " If it hurt dont do it." Thats what I was told to do for 5 weeks post op. I was so decondioned.

 Is there any way to bookmark posts in here?

(( Blessings to All ))

I leave PT tamara. I will be hard not to cry. I had a Great Therapist. I still get very tight if I do too much....and have not been able to take care of the house/ car/ yard. I don't see that for awhile. BUT I have made so much progress.  I start Yoga in Oct. Have to keep streching.

There is a current thread on the DCIS board concerning follow up. If you use the search function at the top of the page, perhaps searching for "DCIS follow up" and restricting your search to the DCIS board, you may find several other threads in which this topic has been discussed by women with MX, BMX and lumpectomies. Be sure to note whether the posters were ER/PR - or + because that, along with the mastectomy status would have bearing on how long and by whom they are being followed.

Julie E

so there is a chance that DCIS can travel in our blood?

Brazo:  I have a  breast MRI, first it was every 6 months then year and now I am every  3 years.  This has the added bonus of checking the implants to see if there is a "silent rupture".. 

Yes, sometimes microinvasions won't be caught. And yes, sometimes cancer cells do enter the bloodstream (not DCIS cancer cells, however - only invasive cancer cells). And yes, there are some women who are initially diagnosed with DCIS who eventually will develop mets.  Most studies put the long-term mortality rate from BC for those diagnosed with DCIS to be in the range of 97% - 98%, although some studies have the number at 96% and quite a few say 99%. 

So yes, some women who have DCIS will develop mets.  But the fact is that most of those who are initially diagnosed with DCIS who eventually do become Stage IV will have a recurrence and some invasive cancer will be found in that recurrence.  That is how most of these situations evolve.  It's only very very rarely that someone will have an undetected microinvasion that will lead to mets, with no invasive recurrence as an in-between step.

• Approx. 10% - 15% of women initially diagnosed with DCIS have microinvasions that are found.  I'm in that group.  We are not counted in the DCIS statistics because we are Stage I right from the time of diagnosis (because our microinvasions were found).  
• I read in one place that as many as 10% more women diagnosed with DCIS may have microinvasions that are not found.  Most of what I've read puts the risk considerably lower so that's certainly at the high end of the risk scale, but let's assume that this is true.  Let's say that the risk of a missed microinvasion is 10%.  10 in 100.  100 in 1,000.  1,000 in 10,000.
• Multiple studies have shown that the risk of lymph node invasion from a microinvasion is 10%. This means that if you have a microinvasion that isn't found (which is a 10% risk), there's a further 10% risk that this missed microinvasion may have led to nodal involvement.  10% of 10% = 1%.  So the risk of nodal involvement from a missed microinvasion is 1%.  1 in 100.  10 in 1,000. 100 in 10,000.
• For those who have SNBs - which is most women with DCIS who have mastectomies and probably about 50% of women with high grade DCIS who have lumpectomies, the nodal involvement is likely to be found when the SNB is done.  While it might be easy to miss a tiny invasion within a large mass of breast tissue, a lymph node is small and it's very thoroughly examined in the pathology lab.  I think if we assumed that 10% of these lymph node invasions were missed we would be very much on the high side.  But let's say it's 10%.  10% of 1% = 0.1%  So the risk of undetected nodal involvement from a missed microinvasion is 0.1%.  1 in 1,000.  10 in 10,000.
• Finally, what are the odds that these few rogue cells that broke off from a microinvasion moved and into the body undetected actually take hold and start to multiply and form an area of cancer?  Again, 10%?  I don't know so that's just a wild guess. Remember that we are talking about very few cells here - an amount small enough that it was never detected. If 10% do take hold and form a cancer, this means that of those who have a clear SNB, the risk that they might develop mets from an undetected microinvasion is 0.01%, assuming that the cancer cells didn't move out through the bloodstream (which is a much less common way for breast cancer cells to travel, vs. going through the nodes).  That's 1 in 10,000.
• What about those who don't have an SNB?  If you didn't have an SNB, chances are that the pathology of your DCIS was not overally aggressive, so the risk of microinvasions was lower.  Or what about the possibility that the cancer cells from the missed microinvasion moved into the bloodstream or maybe moved through the nodes undetected?  These things can happen, but the odds are much less than nodal involvement.  So if the risk of nodal involvement from a microinvasion is 1%, maybe the risk of these things happening is 0.5%?  5 in 1,000. 50 in 10,000.
• So for this 2nd group, those who didn't have an SNB, or those who had a clear SNB but the cancer cells moved out through the bloodstream or undetected through the nodes, what are the odds that these few rogue cells that take hold and multiply and form an area of cancer?  Again, 10%?  So for this group the risk that they might develop mets from an undetected microinvasion is 0.05%.  That's 5 in 10,000.

I know that I'm just playing with numbers here, but some of these numbers are accurate and others are educated guesses.  Anyway, the point is that while there are some women who initially are diagnosed with DCIS who will eventually develop mets, the number of women who will be caught totally by surprise - because there was no microinvasion ever found, because there was no nodal involvement ever detected, because there was no recurrence with the presence of invasive cancer or nodal involvement - is way less than 1%. 

Having said that, I agree with 3monstmama - no matter how low the risk, the fact is that this can happen and it will happen to someone, even if it's just one woman in 10,000.  So it's important to remain viligant and always monitor your breast area, whether real, reconstructed or flat.  But for goodness sake, don't live your life in fear that it will happen because the odds that it will are so extremely low.