A layperson's guide to DCIS

Sms15

This article has been the most helpful and unbiased information I have read since my diagnosis

blah333

- 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.



I find that this is quite misleading information. What does that even mean "in your breast?" If you have a mastectomy there is no breast left to have feelings in..... I did not get reconstruction and have all feeling on my skin. Yes, it is no longer sexual but it's not NUMB, at all. I feel my whole chest when it is touched. This sounds like it was written by someone who had reconstruction or who had a lumpectomy. Many women who are flat talk about the feel of fabric on their skin etc... This should be edited to say "sexual sensation is lost" or something like that. Now when my chest is touched, it is similar to how it feels when my back is touched.

Beesie

blah, I wrote that paragraph after reading innumerable posts from women saying that they have "regained full sensation" in their breast after a MX. Yup, there are posts on this site that say that. Obviously, as you point out, if you have a mastectomy there is no breast left to have feelings in. Yet you would think otherwise if you read this site. This is particularly relevant for women who are having reconstruction, who will have a breast (of sorts) and who might be misled into thinking that they will regain breast sensation (as opposed to skin sensation) after reconstruction.

The skin sensation that you describe is exactly what I was trying to explain, which is that someone who has a MX might regain feeling on the skin. Not all of us do, of course. I have areas with sensation and areas that are numb.

blah333

Well you should be more clear. There are two realities with mastectomy - if an implant is in place or if it is flat (OK, or other fat to create a mound....) I hate talk about "regaining sensation" because being able to feel is different than the prior sexual sensation. I think I know what you mean. Due to some women's comments online I thought my nerve endings could heal to have some kind of vague residual "sensation" ie sexual, but that is not the case. However the surface of my skin can feel sensual in many instances - big difference, but it is better than numbness/nothing. It is not "lose all feeling" - the way you phrased it sounds a bit severe.

As I first skimmed this, that line reads very anti-mastectomy vs. just a plain reality of having a breast surgery.

Beesie

blah, the reality of breast surgery is that if you have a lumpectomy, you are quite likely to retain all feeling "in the breast". Only if you have a MX, because the entire inside of the breast is removed and all the nerves are cut, will you therefore lose all feeling "in the breast". So my statement was not referring to all or any breast surgery, but was specific to mastectomies.

I have read too many posts on this site from women who have already had a MX, who ask, "when will my breast sensation return?", not understanding that the best they can expect is surface skin sensation. Of course skin sensation can be very pleasant but it is not the same as how any of us would have described "breast sensation" prior to our mastectomies. It is also unfortunately the case that some women regain little skin sensation and remain numb across much or all of the chest. Other women develop hyper-sensitivity and find any touching of their chest skin to be unpleasant. This is why I was careful to not overly emphasize the return of skin sensation, because it is different for all of us.

My statement is not anti-mastectomy (I've had one, after all) but makes points that anyone having a MX should understand in advance. I tried to be as clear as I could be by highlighting the word "in" using underlining and italics, and by following immediately with the explanation that feelings "on the skin" may return. I'm glad for you that you have regained pleasant/sensual skin sensations. I would be happy to change the wording if that were true for everyone but unfortunately that's not the case.

MagicalBean

Thanks for your help, Bessie. I have read and re-read your post since my DX in 2014, and I must tell you how much help and comfort your words have been. I still refer to it on occasion, even now. Bless you.

Beesie

MagicalBean, thank you!

Hope2019

THANK YOU SO MUCH for all the Dcis information.

It helps me understand about Dcis.

God Bless!

Elena1963

Thanks Bessie for your time and such detail answer . I was pretty confident in my decision to skip hormone pills , but there few stories here that made me again think about my initial decision.

LoveFromPhilly

BUMP!

Hoping to help update this thread for a friend recently dx'ed with DCIS. Thank you Beesie SOOOOOOOOO much for this information. Is it still up to date, relatively?

Beesie

You're welcome!

Yes, to my knowledge, still up to date although the stuff highlighted as being new (Oncotype DCIS test, Pink Lotus SNB method) isn't that new any more.

mbb54

I had my biopsy of my right breast last January 12, 2021 and the result said at least low to intermediate nuclear grade ductal carcinoma in situ in solid comedo and clinging patterns. Tumor size 1.2 cm in single widest dimension with no definite lymphovascular invasion identified, Tumor present in 3 0f 4 cores. Immunohistochemical stains for myoepithelial cells (P63 & SMMS) was done on Jan, 19, 2021 for further evaluation for invasion. The diagnosis is that Invasive Breast carcinoma, no special type ,involving 3 of4 cores. Nottingham Histologic grade grade at least2 and nuclear grade 2 associated w/low to intermediate nuclear grade ductal carcinoma in situ in solid cribriform & clinging patterns, Tumor size 0.7 cm in single greatest dimension and no definite lymphovascular invasion identified. The P63 & SMMS stains fail to demonstrate the presence of myoepithelial cells, hence support the presence of invasion. Nottingham combined histologic score: 6 ( Grade 2), Tubule formation Score 3; Nuclear Pleomorphism: Score 2 and Mitotic rate: Score 1. The surgeon who did my biopsy said my stage is DCIS but I sought 2nd & 3RD Opinion and they told me I have Stage 1A and 1 respectively. May I therefore know what my actual stage is? I plan to have mastectomy in 2 weeks time. What type of treatment is needed? What other options do I have based on my diagnosis? Please advise. Thank you very much.

Beesie

mbb54, welcome!

Your description of your diagnosis says "Invasive Breast carcinoma, no special type ,involving 3 of 4 cores". It also says "The P63 & SMMS stains fail to demonstrate the presence of myoepithelial cells, hence support the presence of invasion.". This clearly means your diagnosis is IDC, invasive ductal carcinoma, and not DCIS. So you are preliminarily Stage IA (staging can change once the final pathology is in). Your diagnosis is not Stage 0 DCIS; there is no question about that and I have no idea why your surgeon would say that your diagnosis is DCIS.

You do however also have "associated w/low to intermediate nuclear grade ductal carcinoma in situ in solid cribriform & clinging patterns" which means that along with the IDC, there is some DCIS. This is very common. Most IDC develops from DCIS, so it's very common to find both mixed together in one tumor. But when that happens, while the DCIS needs to be surgically removed, it is otherwise pretty much irrelevant - the diagnosis, staging and treatment is based on the more serious condition, which is the IDC. So you can forget about the DCIS and just deal with the IDC.

As for treatment, that will be based on the pathology of the IDC. You need to find out the hormone status - is the IDC estrogen and progesterone positive or negative (ER+ or ER- and PR+ or PR-)? And you need to find out the HER2 status of the IDC - is the cancer HER2+ or HER2-? During surgery you will also have lymph nodes removed, and your treatment might be affected by whether or not you have any positive nodes. Triple negative cancers (ER-/PR-/HER2-) are often prescribed chemo even for small tumors. Same with HER2+ cancers. But if your cancer is ER+/HER2-, then a tissue sample will likely be sent for an Oncotype or Mammaprint test, which will assess the aggressiveness of the tumor. Based on the results, you might be prescribed anti-hormone therapy (a daily pill, taken for 5 or 10 years), or if the cancer is aggressive, both chemo plus anti-hormone therapy.

Since your diagnosis is not DCIS, I would suggest that you start a new thread in one of the following forums that I've linked here, so that people with a similar diagnosis can comment and offer advice: Just Diagnosed or IDC (Invasive Ductal Carcinoma)

sorrel

am newly dx with high grade DCIS. I really need some support. Not sure where to post. Quite overwhelmed. I had to take a break from my boyfriend too because he was adding to my stress.

Sometimes he was supportive and sometimes the opposite.

I am struggling. Please could someone reach out to me .

Thank you,

Sorrel

Beesie

Hi Sorrel,

The Moderators responded to your previous post, with instructions on how to start your own thread. It's always best around here for those who are new to start their own thread, rather than tagging on to someone else's thread, so that the attention and answers are specifically directed at you. Here's a link to the thread you posted in previously:

https://community.breastcancer.org/forum/68/topics/879623?page=1#post_5674104

Take a look at the Mods reply to you. Why don't you start a new thread in the DCIS forum and tell us more about you and your diagnosis? Ask away with any questions you have. That will get the conversation going.

CaraleeAW

Thank you! I found this information very helpful. I learned a lot!

Jons_girl

Beesie thank you for this information. I know it’s a older thread. But this was very informative about dcis. Thank you