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.
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
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