We are 154,789 members in 79 forums discussing 122,563 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: “No Radiation after a Mastectomy”… and other misconceptions

Topic: “No Radiation after a Mastectomy”… and other misconceptions

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Feb 19, 2010 06:31PM, edited Mar 15, 2010 07:07PM by Beesie

Beesie wrote:

I've been catching up on the discussions on the board after being off for a few days.  In at least 3 threads, I've read the comment that "no radiation is required for those who have a mastectomy".  I get concerned when I read this because I know this is a factor on which a lot of women make their ‘lumpectomy vs. mastectomy' decision.  And while it is usually true that those who have a mastectomy for DCIS won't need radiation, there is no guarantee - sometimes radiation will be recommended.  Often it can't be known with certainty whether radiation will be required or not until after the mastectomy is done.  If the margins are too close, particularly against the chest wall, then radiation might be suggested.  Additionally, if it happens that the final diagnosis is not DCIS (i.e. it turns out that some invasive cancer is present) and if there is lymph node involvement, then radiation is very likely to be required. 

In all likelihood the women who've made the comment about "no radiation after a mastectomy" are relating their own experience and without doubt they are trying to be helpful.  But the experience of one woman might not be the experience of someone else.  And in the case of whether radiation is necessary after a mastectomy, while most of the DCIS women here who are trying to make the difficult ‘lumpectomy vs. mastectomy' decision probably won't need radiation if they have a mastectomy, for some of you, radiation will end up being recommended.

While I'm writing about misconceptions and misinformation, here are some others that I often see in this forum (and others).  My information is based on what I've learned from my doctors, from others on this site and from doing a lot of reading up on breast cancer, and DCIS in particular, since I was diagnosed. While I usually provide url links and quotes from articles and studies to support the information I provide, I won't do that here since I suspect this will end up being too long even without that (yup, I do tend to be verbose).

 - DCIS is Stage 0 breast cancer - always, whatever the grade, whatever the size.  DCIS is always non-invasive; there is no such thing as "invasive DCIS".  DCIS can evolve to become invasive cancer but at that point, the diagnosis changes to IDC.

 - A fairly common diagnosis is "DCIS with a microinvasion".  This diagnosis is actually a subset of IDC;  "DCIS with a microinvasion" is Stage I - it is the earliest possible diagnosis of invasive cancer. 

- It is very common to have DCIS and IDC together.  When that happens, the diagnosis, staging and treatment plan is based on the size and pathology of the invasive cancer.  The DCIS needs to be removed but other than that, nothing else needs to be done for the DCIS - it will be adequately treated by whatever treatments are given to address the IDC.

- If you have lymph node invasion, you do not have DCIS.  DCIS cancer cells cannot travel to the nodes or move into the bloodstream.  The cancer cells must evolve to become IDC before that can happen.  It can sometimes (rarely) happen that a tiny amount of  invasive cancer is hidden in the middle of an area of DCIS and isn't discovered when the breast tissue is analysed; if this invasive cancer results in lymph node invasion, it might appear that the diagnosis is "DCIS with lymph node invasion" but in fact the medical assumption will be that there was invasive cancer present (but just not found).

- Those diagnosed with DCIS (or early stage invasive cancer) usually will not get a CT scan or PET scan (however these scans are quite common among those who have more advanced BC).

- If you have pure DCIS, you will not need chemo.  Chemo is a systemic treatment - it is given to address the risk that cancer cells may have moved into the body (i.e. distant recurrence/mets).  Chemo is not given to treat cancer that is in the breast and DCIS, by definition, is confined to the breast - that's why chemo isn't necessary.  If it's found that you have a small amount of invasive cancer (a microinvasion) along with your DCIS, according to current treatment guidelines, you still won't be given chemo because the risk of distant recurrence is considered too low to warrant such a toxic treatment.  If it's found that you have a larger amount of invasive cancer, then chemo might be required, depending on the size and pathology of the invasive cancer.

- If you have pure DCIS, you do not need to have an oncotype test.  This test is used to determine whether chemo is advisable or not.  Since chemo is not given for DCIS (see above), the oncotype test isn't necessary for those who have pure DCIS.

- HER2 testing is sometimes done on DCIS but at this point, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS so don't worry if you don't know your HER2 status.  While HER2+ invasive breast cancer is considered to be very aggressive, there is little understanding of what HER2+ status means for those with DCIS and there are no special/different treatments for those who have HER2+ DCIS. What is known is that a fairly high percentage of DCIS is HER2+ (a much higher percentage than for IDC) which suggests that as DCIS evolves to become invasive, in some cases HER2 overexpression may be decreased, with the cancer changing from being HER2+ (as DCIS) to HER2- (as IDC).  For this reason, for those who have DCIS with a microinvasion who are HER2+, it is important to know if it is the DCIS that is HER2+ or if it is the microinvasion. 

- A sentinel node biopsy is not required for those with pure DCIS.  For those with high grade DCIS, there is a significant risk that some invasive cancer might be found in the final pathology, so often an SNB will be recommended. This is particularly true for women having a mastectomy (because an SNB cannot effectively be done after a mastectomy) however sometimes high grade women having a lumpectomy will also have an SNB.  For women who have a low risk that invasive cancer may be found along with their DCIS, current treatment guidelines suggest that an SNB is not necessary even if they are having a mastectomy. 

- Lymphedema is possible, even after an SNB.  Approx. 3% - 7% of women who have SNBs develop lymphedema.  Lymphedema can develop anytime in your life after you have nodes removed and once it develops, you will have lymphedema for life.  This is an important consideration for anyone having an SNB for DCIS (particularly lower grade DCIS). 

- If you have a mastectomy, you will lose all feeling in your breast.  If you have a skin sparing mastectomy, you may regain some feeling on your skin but this is not the same as having feeling in your breast.  Think of what you would feel if you had a baseball inserted under a layer of your skin - the only feeling you would have in that area is a surface feeling.  While all the natural breast sensation is gone once the breast tissue is removed and the nerves are cut, there have been studies that show that a percentage of women develop phantom feelings that seem like real breast sensation.  (In my case, when I get chilled, it feels like my nipple hardens, except I don't have a nipple.).  While some phantom sensations can be pleasant, with a mastectomy there is also a risk that you may develop real or phantom pains.  All this is to say that a mastectomy is an amputation and it comes with all the possible side effects of any amputation.  And a reconstructed breast cannot develop real sensations.  This is not to discourage anyone who wants to have a mastectomy; this is just to lay out the facts.

- It is not true that only 20% (or 25% or 40% or whatever %) of DCIS will ever become IDC.  The fact is that nobody knows what percent of DCIS will eventually evolve to become invasive cancer.  Studies of low grade DCIS have suggested that perhaps only 20 % - 40% may become invasive over 5 to 10 years but other studies have shown that low grade DCIS, left untreated, can evolve to become invasive cancer after 25 or 30 years.  For those with high grade DCIS, it is believed that the percentage that will become invasive is very high but because high grade DCIS is almost always removed and treated, there is no way to know what percentage would become invasive if allowed to progress naturally.  It is known that after treatment (i.e. when the DCIS is surgically removed), if there is a recurrence, in approx. 50% of cases the recurrence will not be found until the DCIS has progressed to become IDC. 

That's it for what's top of mind.... I hope this is helpful to those of you just grappling with a DCIS diagnosis.  And I welcome anyone who is educated and experienced with DCIS to add their own points (and correct any of mine, if I've misstated anything).

Edited Feb.20th 10:45 am to add:

- Recurrence risk after a lumpectomy for DCIS is based on your personal pathology and can't be known until after surgery.  So don't assume that what your risk will be the same as anyone else's. The key factors that go into the determination of one's recurrence risk are size of the surgical margins, size of the tumor/area of DCIS, grade of tumor, presence (or lack of presence) of comedonecrosis, hormone status and age of patient at time of diagnosis.  What this means is that someone who is older who has a small, low grade DCIS tumor and good surgical margins might have a recurrence risk that is as low as 3% - 4% (even without radiaton) while someone who is younger who has a larger, high grade tumor and poor surgical margins could have a recurrence rate that is as high as 60% (prior to radiation). Because the size of the margins and the size of the tumor aren't known until after surgery, it's impossible to know for sure what your recurrence risk will be until after the final pathology report is available.

- For those who have pure DCIS, the recurrence rate after a mastectomy is generally in the range of 1% - 2%.  There have been many studies over many years that have confirmed this recurrence rate after a mastectomy (Full disclosure: There have also been very rare studies that have shown a higher rate, in the range of 7% - 10%).  Recently a new study has shown however that for those who have negative or very tiny surgical margins after a mastectomy (1mm or smaller), the recurrence rate might be higher.    

Edited March 6th 9:40 am to add:

- DCIS cancer cells, if moved out of the milk duct, will not become invasive and start to spread.  DCIS cancer cells are pre-invasive. They have most of the characteristics of invasive cancer cells but they require one final molecular change to the myoepithelial layer of the cell to become invasive cancer.  What this means is that if you have a biopsy or surgery that releases some DCIS cancer cells into the open breast tissue, you don't have to worry that these cells will become invasive cancer. As DCIS cancer cells, without having had this molecular change, they will not be able to thrive and grow and multiply in the open breast tissue.

Edited March 15th 7:10 pm to add: 

- DCIS cannot recur in the contralateral (opposite) breast so a diagnosis of DCIS does not put you at any risk of "recurrence" in the other breast.   The fact is that it is very unusual for any breast cancer to recur in the other breast.  For breast cancer to recur in any location outside of the originating breast, what happens is that some invasive (not DCIS) cancer cells leave the breast, either through the lymphatic system or through the bloodstream, and then settle elsewhere in the body.  This is how metastisis happens.  When this happens, some of the usual places that breast cancer cells move to are the bones or the liver.  It is very unusual for cancer cells to move from one breast through the lymphatic system or bloodstream and then land in the other breast. This just doesn't happen very often.  So even invasive cancer rarely recurs in the contralateral breast.  As for DCIS, DCIS cancer cells are confined to the milk ducts; they cannot move into the lymphatic system or the bloodstream.  While DCIS might spread out within the ductal system of the breast, DCIS cancer cells will remain within the originating breast.

- A diagnosis of DCIS, like any diagnosis of breast cancer, increases the future risk that you might be diagnosed with a new primary breast cancer, in either breast.  While DCIS cannot recur in the contralateral breast, any diagnosis of breast cancer, even DCIS, is believed to increase the future risk that you might be diagnosed again.  This second diagnosis is not a recurrence, but is a new primary breast cancer, unrelated to your first diagnosis.  How much your risk goes up vs. the average women (who hasn't been diagnosed with BC) depends on your personal health history, your family history of breast cancer, and your age.  So it is important to talk to your oncologist to understand your risk of being diagnosed again - it is different for each of us and it might be higher than you expect or it also could be lower than you expect and this can impact decisions on hormone therapy and mastectomies. 

Log in to post a reply

Page 2 of 4 (106 results)

Posts 31 - 60 (106 total)

Log in to post a reply

Feb 25, 2010 03:31PM Beesie wrote:

mawhinney, how interesting!  Yours is the first situation I've heard of where the injection was made into the arm. I've read a lot about SNBs and I don't recall ever seeing this mentioned.  All the articles I've read - and every other case I've ever heard about - the injections were either in or around the tumor, or around the nipple. But what you said is very helpful to me.  I read recently that contrary to popular belief, it may sometimes be possible to do an SNB after a mastectomy and I didn't understand how it could be done.  Now I understand - the injections would be made into the arm.  But, since this is not the usual way that SNBs are done, and because it is so important to ensure that the correct node has been identified, it probably will take some time before this approach is adopted and perfected. But that provides promise that in the future, maybe women who have mastectomies for DCIS won't have to have SNBs at the time of their mastectomy, because an SNB will still be possible afterwards, should some invasive cancer be found.

sherry, I can't tell from what you've quoted from your pathology report what your smallest margin is, and that's key to determining your recurrence risk.  A margin of 2mm is a clear margin and 2mm is usually considered to be acceptable however the recurrence risk for someone who has a 2mm margin will be higher than the recurrence risk for someone who has a 10mm margin.  As for the MRI, I had an MRI about 4 weeks after I had my excisional (surgical) biopsy.  During my biopsy two large areas of breast tissue were removed - it was no different than a lumpectomy.  I know that they had no problem reading the MRI.  So I wonder whether it might still be possible for you to have an MRI now.  If you are unsure about what to do, an MRI might really help with your decision.  In my case, I had dirty margins after my excisional biopsy and was trying to decide between a re-excision and a mastectomy.  My MRI showed "stuff" throughout my breast and while there was no way to know for sure if the "stuff" was more DCIS, my surgeon and I both guessed that it was.  So I went with the mastectomy and it turns out that the MRI was right - there was a lot more DCIS.  On other other hand, the MRI on my other breast came back clear so that helped me decide to have a single mastectomy.  An MRI might be something that is worth pursuing.  Good luck!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Feb 26, 2010 08:07PM Beesie wrote:

Laurakay, the info and discussion in this thread may be helpful to you too. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 4, 2010 01:34PM , edited Mar 4, 2010 01:35PM by Bren-2007

Beesie ... I'm bumping this for a guy named in Les who just posted in the "Just Diagnosed" forum about his wife.

Thanks for all your hard work !

love you,

Bren

Log in to post a reply

Mar 4, 2010 06:49PM aces wrote:

Beesie, 

Okay I have some questions for you....I had a BMX with TE on January 26th.  Final path showed two seperate spots of high grade DCIS and one spot of lobular hyperplasia. The DCIS was small but one of my margins was close-1mm and it was against my chest wall.  My ONC did have the"thank God it was only DCIS" attitude.  No one has mentioned radiation.  I had to visit a GYN/ONC about my ovaries because of family history.  She actually said she would call my onc to discuss tamox.  I have yet to hear back from her and it has been three weeks and I have called her two times.  Curous to hear what you have to say....any ideas on recurrence rate with this margin against chest wall?  Ever heard of radiation in this situation?

Dx 12/23/2009, DCIS, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Mar 5, 2010 10:00AM aces wrote:

Beesie,

This is the only study I could find....looks like I have all of the risk factors that would indicate possible need for radiation....less than 2mm and age <60

http://www.redjournal.org/article/S0360-3016(08)03116-7/abstract

Dx 12/23/2009, DCIS, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Mar 5, 2010 11:15AM Beesie wrote:

aces, that's the study that I was referring to.

Until this study came out in 2008, it was very unusual to have radiation recommended after a mastectomy for DCIS if the margins were 1mm or greater.  I saw it a few times on this board for those with smaller margins (0.2mm for example) or negative margins (cancer cells right at the edge of the removed tissue) but very rarely for those with margins of 1mm or more.  I was in that camp (although my 1mm margin was at the skin) so I paid a lot of attention to posts from others who were in that situation.  Quite a few women went for 2nd opinions and I remember one women went for 4 opinions, all at the most highly rated cancer centers.  All said "no" to radiation.

With this new study, there does seem to be a bit of a shift, but this is only one study and there were only 80 patients in the relevant groups (margins <10mm, no radiation) and only 31 who had margins of <2mm.  Because the sample size is so small, it's not possible to know if those with margins of 1mm or greater had a more favorable result (less recurrences) vs. those with smaller or negative margins - all the 31 women with margins of 2mm or less were grouped together.  I would guess that the smaller the margin, the greater the likelihood of recurrence but we just don't have that info yet.  

This uncertainty is why I think a lot of oncologists and radiation oncologists probably are still sticking to their previous recommendation that no radiation is needed for those with 1mm margins.  If their experience is good (i.e. a very low recurrence rate) there is not enough compelling info to change.  But certainly you do fall in what is now a gray area.

Sorry I couldn't be more helpful!

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 6, 2010 09:47AM Beesie wrote:

I've edited my primary post to include the explanation that "DCIS cancer cells, if moved out of the milk duct, will not become invasive and start to spread."
Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 7, 2010 02:25PM hliu_2001 wrote:

Beesie,

Thanks for your reply and explanation. I met with both the breast surgeon and an oncologist, both of them told me that the 2mm margin is acceptable and it is inferior anterior margin (they explained to me that means the closest margin is at the skin site), and that I should not need radiation. What a relief!

Now is the question about whether to take Tamoxifen, the oncologist did recommended to me based on my situation (grade 3, multicenter DCIS, and my age 40, but no family history), she thought the benefit would outweigh the side effects. I have searched in this forum regarding the Tamoxifen side effects, and those side effects really scared me, seems if I took this for 5 yrs, my life would never be the same as before. All those side effects also makes me wonder if I would be able to still go back to work as I used to (my job does need a lot of hard brain work).

I read somewhere saying that if you stopping taking Tamoxifen before 5 yrs, your risk of getting recurrence would highly increase. But the oncologist said that was not true, even though you only take 1 or 2 yrs, you still would benefit from taking it. Going to see another oncologist for second opinion next week, but can anyone with similiar situation give me some advice??

Beesie, I know you have researched a lot and made your decision of not taking the Tamoxifen, would you referr some of the articles you have read? If you don't mind, would you also tell me what have led you to your decision?

Thanks!!

Dx 12/31/2009, DCIS, 2cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
Log in to post a reply

Mar 7, 2010 05:37PM NancyNJ wrote:

I learned some new things recently.....While you may have a SN biopsy done and told that it's clear does not mean that there were no cancer cells - there is a 5% differential. So up to 5% of the biopsy sample could contain cancer cells and still be considered OK.  Also you have to be careful when reviewing the stats for recurrence/new cancers. It's unfortunate but in most studies, if you've had DCIS in the left breast an invasive cancer in the right breast is considered a new cancer not a reoccurance.

Dx 12/1/2008, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
Log in to post a reply

Mar 7, 2010 05:56PM , edited Mar 7, 2010 06:19PM by Beesie

hliu_2001,

My understanding is that if you take Tamoxifen, but for a shorter time than the 5 year regimen, you will get partial benefits - some risk reduction but not the maximum risk reduction.

As for my decision to not take Tamoxifen, I based it on a risk/benefit assessment, as well as my oncologist's recommendation. I was diagnosed with lots of high grade DCIS and a microinvasion of IDC. I had a single mastectomy and an SNB. My lymph nodes were clear.  My oncologist recommended against Tamoxifen for me. His explanation was that with DCIS, even with a microinvasion, after a mastectomy my risk of recurrence is only about 1% - 2%. While Tamoxifen can reduce recurrence risk by about 40%-50%, for me that would be at most a 1% benefit, compared to a 2%-3% risk of serious side effects from Tamoxifen.

There was one other factor that my oncologist wanted me to consider, however, and that was the protection that Tamoxifen would provide to my remaining breast.  He explained that my lifetime risk (to age 90) of getting BC in my remaining breast was about double what it would be for the average woman my age (I was 49 when diagnosed).  That worked out to 22%. The way Tamoxifen works, if you take the full 5 years of therapy, you get full benefit for about 10 years.  After that, studies have shown that the benefit continues, but at a declining rate. In my case, my cancer was ER+ but PR- so I guessed that my benefit would be on the lower side - probably closer to 40% risk reduction rather than 50%.  So doing the math, if I got full benefit for the first 10 years, that would be about a 2% - 2.5% risk reduction over those years.  If I got a 50% benefit for the next 10 years, that would about another 1% risk reduction.  So my total benefit would be a bit less than 4%, which for me was not enough to warrant the risk of serious side effects and the potential quality of life issues.

Here's another way I thought about it.  Of 100 women my age with something like my diagnosis, if none of us take Tamoxifen, 24 of us will get BC again (a recurrence or a new primary). If all of us take Tamoxifen, about 19 of us will get BC anyway. This means that from this whole group, 5 women will benefit from taking Tamoxifen.  I'm not normally a pessimist, but I can't help but think that if I'm unlucky enough to be one of the 24 doomed to get BC again, chances are I'll be unlucky enough to also be one of the 19 who will get BC despite taking Tamoxifen.  I understand and appreciate that a lot of women would look at it differently - and they would take Tamoxifen to ensure that they don't miss out on the chance that they would be one of the 5 who benefits.  But that's not me.  So it's all in how you look at and assess risk.

Having explained all that, I want to emphasize that I do think that Tamoxifen is a great drug - it can reduce the risk of recurrence by about 40%-50% and that benefits a lot of women.  But like most drugs, Tamoxifen comes with side effects and risks.  For Tamoxifen, the risk of serious side effects is about 2%-3% (this can be higher or lower depending on your age and your health history).  Tamoxifen also has a long list of possible "quality of life" side effects.  For someone who has a high risk of recurrence, and particularly, for those who have a high risk of distant recurrence (mets), the risk/benefit equation works out completely differently than it did for me.  For women who have those risks, personally I think taking Tamoxifen is an obvious decision.  But for those of us who have a lower risk, and particularly no risk (or minimal risk) of distant mets, the decision becomes one of personal choice.  How much recurrence risk are you willing to live with?  How much risk reduction is enough to warrant the risk of side effects and the possible discomfort?  The answer to these questions is different for each of us.

Hope that helps.  And here are some websites with info about Tamoxifen, including clinical trial results.  Unfortunately some of the clinical trial result detailed tables that I used are no longer readily available.

http://www.rxlist.com/nolvadex-drug.htm#ad

http://www.drugs.com/pro/tamoxifen.html

http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPro/Tamoxifen.htm

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 7, 2010 06:11PM Beesie wrote:

Nancy, when it comes to nodal involvement, there is something called Isolated Tumor Cells (ITC), which are defined as "single tumor cells or small cell clusters not greater than 0.2mm" which, if present, still result in the diagnosis being "node negative".  But those who have ITC should have this noted on their pathology report.  The correct staging designation for those with ITC is "pN0 (+)".  For those who have an SNB that is truly negative, with no ITC, the staging designation is "pN0 (-)".  (Note that the "p" stands for "pathologic", meaning that the result is based on the findings of the pathology report.)  http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

As for recurrence vs. new primary, anyone diagnosed with breast cancer (DCIS or any other kind), faces two different and separate future risks.  First is the risk of recurrence, which is when the initial cancer recurs, either in the same area or in another location in the body. Second is the risk of a new primary breast cancer, which is a second BC diagnosis totally separate from the first diagnosis.  In most cases when breast cancer is diagnosed in the contralateral breast (i.e. the opposite breast), the cancer is a new primary.  This is not just true for those who have DCIS but for most women diagnosed with BC.  This is because when breast cancer recurs outside of the original breast, it usually moves into other parts of the body - the bones, the liver, etc..  It is unusual for the cancer cells to travel from one breast through the lymphatic system or the bloodstream and land over in the other breast.  So a true recurrence in the contralateral breast isn't very common.  This is why the studies refer to a cancer in the opposite breast as being a new primary, not a recurrence.  It is a totally separate cancer.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 9, 2010 12:01AM hliu_2001 wrote:

Beesie, Thanks so much for getting back!! These information are really helpful!

Dx 12/31/2009, DCIS, 2cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
Log in to post a reply

Mar 15, 2010 07:09PM Beesie wrote:

I've edited my main post again, to add two important, and often misunderstood, discussion points about DCIS and future risk:

- DCIS cannot recur in the contralateral (opposite) breast so a diagnosis of DCIS does not put you at any risk of "recurrence" in the other breast. 

- A diagnosis of DCIS, like any diagnosis of breast cancer, increases the future risk that you might be diagnosed with a new primary breast cancer, in either breast. 

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 24, 2010 05:35PM Beesie wrote:

Bumping to the current list of posts, for those who are newly diagnosed.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Mar 31, 2010 05:54PM dsj wrote:

bump

Dx 1/20/2010, DCIS, <1cm, Stage 0, Grade 2
Log in to post a reply

Apr 2, 2010 09:53AM mom3band1g wrote:

sigh, had the mast after failed lump and still didn't get good margins.  Now I have to do rads.  So, indeed, mast does not always mean no rads.

lumpectomy 2/10/10 bi-lat mx 3/25/10 rads completed 7/10! Dx 1/19/2010, DCIS, 6cm+, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Apr 2, 2010 11:44AM dsj wrote:

oh no!  I am so sorry.  What a disappointment.  But it's still all DCIS, right?  I am really thinking of you right now.  So, so sorry. 

Dx 1/20/2010, DCIS, <1cm, Stage 0, Grade 2
Log in to post a reply

Apr 2, 2010 02:42PM jameson wrote:

hi! i am soo sorry to hear that.....   what does that mean now????  i have multifocal facing mast?  does it mean more surgery??? will radiation cure it?,,,, what happens now????

Log in to post a reply

Apr 2, 2010 03:50PM mom3band1g wrote:

dsj, yes, the good news is that is was all still DCIS.  There was a lot though, 6 1/2cm. 

jameson - because my margins were not optimal my surgeon is rec rads to prevent a recurrance.  I meet with the rad onc April 14 and will know more then.

lumpectomy 2/10/10 bi-lat mx 3/25/10 rads completed 7/10! Dx 1/19/2010, DCIS, 6cm+, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Apr 17, 2010 12:05PM jameson wrote:

how are you feeling mom3?  how are you recovering from your surgery? i am very panicky about my upcoming mastectomys,,,,,when do you start these rad treatments?

Log in to post a reply

May 1, 2010 10:56PM Beesie wrote:

Bumping for Pat1154.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

May 20, 2010 09:32AM prayrv wrote:

bump

Dx 4/27/2007, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Jun 4, 2010 05:31PM 3monstmama wrote:

bump

Pain is inevitable. Suffering is optional.
Log in to post a reply

Jun 8, 2010 11:02AM CarolineNC wrote:

Beezie, thanks for sharing your research.  I'm headed for a 2nd opinion tomorrow and my head is spinning.  I thought I had my path clear and then had pain in my 'other' breast over the weekend and started to second guess everything.  What I have heard is that 25% of DCIS patients, if after lumpectomy took no further treatment, would have a recurrence.  (I had 5+mm clear margins, sig fam history, neg BRCA)  If you add radiation, that cuts the 25% by 60% so down to 10%.  Then if you add Tamoxifen for 5 years, that can cut the 10% by I think half again.  So down to 5%.   Whatever the ending percent recurrence, 50% will be DCIS and 50% will be invasive.  But is this lifetime or just the breast that had DCIS?  Mastectomy cuts it down to 3-4%.  If I'm being honest with myself and think I won't take tamoxifen, then its the 10% vs. the 3-4% if I have a double mastectomy decision.

Ugh!  I have a 2nd opinion tomorrow, but am scheduled to get set up for radiation next week.  I wonder if I'm the only one who starts to panic when final decision time is looming.

Then the more I read, you see statistics, where 'lived 5 years', lived 10 years', and it gives me pause.  I know those of us with DCIS have been fortunate to be grade 0 - but the overall statistics still apply to us.

Thanks again for your posts like this.  It gives us one place to read so much information with backup links provided!

Diagnosis #1: 4/23/2010 DCIS <1cm Grade 1 ER+/PR+ 0/2
Log in to post a reply

Jun 10, 2010 09:44AM tweetybird wrote:

Bessie,

What a great post! I don't know how I could have missed it! I found out a few new things about DCIS that I never knew. Thanks for all of your time and help here! You're a real Godsend to BCO! Smile

Janet :) Dx 7/24/2006, DCIS, 1cm, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
Log in to post a reply

Jun 23, 2010 01:53PM CarolineNC wrote:

bump for rdeansrowe...

Diagnosis #1: 4/23/2010 DCIS <1cm Grade 1 ER+/PR+ 0/2
Log in to post a reply

Jul 11, 2010 07:03PM Beesie wrote:

Bumping for nwshannon.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Jul 11, 2010 10:21PM mahouna wrote:

Just curious id you have ever read The China Study?

Dx 5/15/2010, DCIS, <1cm, Stage 0, Grade 2, ER+/PR-, HER2-
Log in to post a reply

Jul 11, 2010 11:17PM Beesie wrote:

I haven't read the full study itself but I've read excerpts, as well as many articles about it, both pro and con.  As someone with a research background, I question some of the methodology and findings. 

I won't say anymore because discussions about The China Study usually get rather heated and I think there are other places on this board where this topic would be more appropriate, rather than here in a thread about misconceptions about DCIS.  I'd prefer that this thread not go too far off topic.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Jul 13, 2010 09:35PM CarolineNC wrote:

bump for notsure

Diagnosis #1: 4/23/2010 DCIS <1cm Grade 1 ER+/PR+ 0/2

Page 2 of 4 (106 results)