Just Diagnosed

I am feeling better by the hour, but keep thinking about my doctor's delivery of my results (described above), and feel pretty angry about it. If I hadn't known so much ahead of time, I think I would have been devastated. I'm thinking of others getting the news from her who may not have researched. I know - it's not worth being angry. But could anyone else share the way you were told about your DCIS? (The doctor wants to see me in 6 weeks, and based on what the surgeon says and his or her attitude, I think I'm going to talk to her about her lack of bedside manner.)

I found out in a phone call from my gyn, who had written the original referral for the mammogram that started it, so she got the report. She said "it shows DCIS, so you need to call a surgeon ... they may want to do radiation or something". That was the extent of the conversation. Fortunately I already knew what DCIS was (due to my mom having been diagnosed 6 weeks prior with separate areas of both DCIS and IDC), as she didn't explain at all.

She also didn't tell me that in addition to the DCIS, there was a tiny area of IDC ... I don't know if she figured she'd let the surgeon tell me about that or just that she didn't read that far - when the surgeon gave me a copy of the report it described the DCIS first, then in another paragraph further down it mentioned the micro-invasion of IDC.

The way it was handled didn't particularly bother me, but mostly only because I was already pretty well informed about early stage breast cancer and associated treatment plans and options from the situation with my mother. Had I not had that knowledge, I probably would have been freaking out.

She's doing very well, thanks for asking. She chose to have a mastectomy as with the two separate areas and her not being particularly well-endowed she wouldn't have had much left with a double lumpectomy. She did not have reconstruction because, as she put it, they don't make "saggy old lady implants" so she would have to have the other side lifted too, and it was more surgery than she felt like going through at her age (76). She didn't need radiation or chemo, and while they would have liked to have her on hormonal therapy, she chose not to do it because she already has osteoporosis and the risk reduction didn't seem worth the risk of further damage.

My appointment with the surgeon and to hear what the team suggests as the treatment plan is set for Wednesday. My sister is having her second bout with cancer - first in 1999 - this was discovered a year ago. I called her and found out she didn't know the terminology of her diagnosis when it was found in 1999. I've been basing my assumptions on what my treatment should be based on her experience (she had a lumpectomy, chemo, radiation - 5 lymph nodes were removed and all were clear). (In other words, I was thinking I should have a mastectomy). I have DCIS, although high grade, non estrogen receptive.

Does anyone know if my sister's diagnosis might be relevant to my own case. For instance, hers may have already been invasive. It seems that since our mother also had breast cancer in 1999, that our cancers were caused from the same gene or predisposition, anyway, so I'm not sure that pressing her for exact details (she'd have to call for her old records) would make any difference at all in my own treatment decision. I'm also curious because between us we have 6 daughters all approaching age 40.

So what I'm asking basically - would it be relevant to ask my sister to try to get her initial pathology results from 1999 (when it might be painful emotionally for her) or is all hereditary breast cancer the same and wouldn't matter to find out in the long run to me or our girls?

Hi Mayanne, I was reading through this thread, and I was glad to read that you with be going to MGH. I'm a big believer in going to a major cancer center if you can, although my Mom went to the local general surgeon, and had mastectomy, chemo and radiation all done locally (had node involvement/possible chest wall involvement), and she's still around (28 years later), and with no lymphedema. All of her friends went to the big city hospitals and somehow ended up with lymphedema.

Here are my thoughts about your situation. It makes sense for you, or even better, your mother or sister, to be tested for the BRCA genes, the most common breast cancer genes. If your mother is a carrier, then you can be tested for the specific genetic pattern that is potentially inherited in your family. If you test positive, then your risk of bc recurrence is much higher than average, and you would then be considering not just mastectomy of one breast, but mastectomy of both breasts, and possibly ovary removal (risk of ovarian cancer). If you don't test positive for a BRCA gene, you might be able to still consider a lumpectomy, and leave the other breast alone. Your pathology report says that the DCIS is multifocal. If it is multifocal and multicentric (in several locations), then very often it is difficult to do a lumpectomy without significant cosmetic changes. If it's multifocal but all basically within the same vicinity, then it's easier. The survival statistics for lumpectomy vs. mastectomy are virtually the same. You should certainly come prepared with lots of questions for the MD's at MGH. One would be, do they think that the negative hormone receptor status makes your DCIS more aggressive than DCIS with positive hormone status? In IDC, that is generally true. In DCIS, I'm not sure if that is true. What is true is that you can't be treated with hormonal treatments. Ask them about the survival stats for mastectomy vs. lumpectomy. Ask what your (as best they can determine) recurrence risk would be for lumpectomy vs. mastectomy. Recurrence risk is different from survival statistics. In the case of DCIS, recurrence refers to either recurrence of DCIS or recurrence in the form of IDC, which is generally local to the breast. It is highly unlikely that recurrence would be metastatic if the original diagnosis was accurate and it was pure DCIS (I didn't say never--but I said very highly unlikely). It has been found that when there is a recurrence following an original DCIS diagnosis, 50 percent of the time it is a DCIS recurrence, and 50 percent of the time it is IDC. In addition to all that I've said, until they do your lumpectomy or mastectomy, they won't be sure that you don't already have an area of IDC. If I were you, I'd ask to also get an MRI, if you haven't had that done already.

Try not to worry about the PCP's delivery of the news. You don't really need her at all right now. Go get your treatment. If, after it's all done, you still feel uncomfortable, that's the time to get a new PCP, if possible, or give feedback to her. I know that we are very sensitive to EVERYONE's reactions to our situation. I didn't get the "call" from the PCP, but rather from the surgeon, as my DCIS diagnosis was based on an excisional biopsy. I got the call at 10:30 pm in the evening, and it went like this "It's cancer." so I said "cancer or DCIS?". His response, "DCIS is cancer." I had waited 10 days for those results. My PCP never called me, and when I went in with my daughter a couple of months later (and she saw her), she didn't say a single thing to me, like "sorry you are going through this". Absolutely nothing. I asked if she got all of the faxes I sent her (path reports, etc.) and she said "yes." I was also kind of miffed at her reaction, but she isn't a warm and fuzzy type to begin with. Later in the year, I read in the NYTimes that her sister died of ovarian cancer, so maybe she thought what I was dealing with was small potatoes. I sent a small condolence note to her, and although she never brought that up (which was fine), at least I communicated that I cared.

Best of luck to you!! Keep us posted. Sorry for the long note.

  I live in Marin, just outside SF.  I am with Kaiser and cannot afford to go outside for an MRI.  After reading much, I want an MRI before lumpectomy.  Prefer a RODEO MRI, as there seem to be many fewer less false positives, but will take any MRI for the breast if I can get one.  I know I have been "diagnosed" by 2 punch samples (only 2 as the area is so small) with low-grade DCIS, but knowing there are MRIs out there, do not feel fully diagnosed.  When I told MO I'd like one, she said it's not indicated.  When I told her I knew women at Kaiser who've had them even pre-biopsy, she said they probably had a family history or somehing.  They did not.  Am seeing 2nd opinion breast surgeon tomorrow, so need answers ASAP, please, and thank you.  Anyone with Kaiser in SF area (SF, Marin, Santa Rosa, etc.) have an MRI pre-treatment, was it a RODEO or not, was it at least a breast MRI  and not a regular MRI machine, which facility, did you have to request/ fight for it, and, if you feel like saying, who ordered it?  Thank you all so much.  This appt. is my LAST STOP before proceeding.

I just had a needle biopsy and diagnosed with DCIS....waiting for my report and also surgeon consultation on the 17th. So far been impressed with delivery of services and information. Am 70 years old in excellent health so this diagnosis threw me so anxiously waiting for treatment plan. From all I have read a lumpectomy with radiation appears to be the best treatment plan but still need information on the severity of DCIS diagnosis.

These entries from others have been both informative and reassuring..thank you

thank you for responding...this whole process has been scary and a bit overwhelming being a person who has fortunately had no major health concerns over my 70 years. Your posts are so informative and written in layman terms so they are understandable to we unmedical types. Thank you for all of your time given to inform and support people like me moving into a new world of the newly diagnosed cancer patient.

Mommy- Im no Beesie, so hopefully she will respond-- but Id think it would almost be automatic for your surgeon to do a sentinal node biopsy (snb) during the mastectomy. I started out with dcis and had lumpectomy but ended up doing bmx due to other tumors found. When you go to your plastics guy- is he doing reconstruction? putting in tissue expanders during the surgery to start the process? recommend one of the flap reconstructions?? Regarding grade of the tumor, I think they cannot tell that until after the tissue is removed and you get your pathology report back.

Mommyathome, from the pathology report, it appears that you have relatively small area of DCIS - it's multifocal (meaning that there is DCIS in more than one area) but in total there is only 1.5cm of DCIS. The DCIS is a combination of grade 1 and grade 2 (also called low and intermediate grade). That's all pretty good. There is no invasion, no high grade DCIS, no necrosis within the DCIS. All very good. Even better is that you have clear margins, although the closest margin is 1mm, which is close. You also have a bunch of fibrocystic conditions, but those aren't of any concern - my pathology report read like a pathology manual listing for fibrocystic conditions.

If you were not planning to have the MX, it's likely that a re-excision (a small lumpectomy) would be recommended to widen that one narrow margin. An SNB would not be done. From the excisional biopsy pathology report, it appears that you have DCIS and only DCIS - no invasive cancer. Stage 0. With only DCIS, the nodes do not need to be checked.

However you are planning to have a MX. That changes things. Normally when someone has a MX for DCIS, an SNB is done because of the risk that something more than DCIS might be found in the final pathology. If it all turns out to be DCIS, no problem. But the presence of any amount of invasive cancer, even just 1mm, changes the staging to at least Stage I and with that invasive cancer comes the need to check the nodes. Since an SNB can't be done after a MX (or at least, not easily), it's usually done with the MX.

However, your situation is different from most because you have the pathology from the excisional biopsy and it's already known that there is no invasive cancer. With the clear margins, the expectation would be that no more DCIS - never mind IDC - will be found in the MX pathology. The only fly in the ointment is that you did have that one narrow margin, and you did have DCIS that is multi-focal. So your risk of finding some invasive cancer in the final pathology certainly isn't 0%, but it's also not the average 20% risk that other women with DCIS have when they head into an MX, having only previously had a needle biopsy.

All that is to say that there is no simple answer to your question as to whether you should have an SNB. An SNB comes with about a 5% (or maybe as high as 10%) risk of lymphedema. So there is a risk if you have the SNB - and this risk of lymphedema stays with you for life - and there is a risk if you don't have the SNB and some invasive cancer is found. At that point, you would need to have a more extensive surgery on your nodes. Which risk is higher? I don't know. My suggestion is that you talk to your doctor, ask what he thinks the risk is that there might be some surprises in the final pathology, read up on SNB surgery and what's involved and what the risks are, and then decide which risk you'd prefer to take. Even if your surgeon recommends an SNB, if you decide that don't want it done, it's your decision. By the same token, if your surgeon recommends against an SNB and you decide you want your nodes checked, it's your decision.

As for the consultation with the plastic surgeon, I'd suggest that you read through the Reconstruction Forum on this board and check out websites that explain the different types of reconstruction, and then create your list of questions from there. The questions you ask the PS depend on the reconstruction options that you are interested in and any concerns you might have about the surgery or recovery or what to expect your reconstructed breasts to be like, etc..

Here are some websites with good information about breast reconstruction:

From breastcancer.org: Breast Reconstruction

From MDAnderson: Breast Reconstruction Click through the list under Table of Contents on the right

Also from MDAnderson, this is a table that compares the different types of reconstruction: Reshaping You: Options for Breast Reconstruction

From the American Cancer Society: Breast Reconstruction After Mastectomy

Edited to add: Mommyathome, I was writing my post as you were writing yours. I see that you have asked your surgeon about the SNB. So you have to take that information and make your decision from there.

Hi percy

Sorry I missed your earlier post- I am a Kaiser member in the bay area different service are than you but same region (NCAL). I did not have an MRI before surgery and I did not request one. For me- I was confident with my pathology report that I needed either LX with radiation or MX. My bigger concern was my non-cancer breast but my mammo is unchanged since that vacuum bx in 2009. I thought about BMX but was not ready and agreed with my PS that surgery on a body part with no clinical indication is not without risk. I figured they can always take more.

I am not sure what you ended up doing after your 2nd opinion appt.? Instead of talking just with your physicians I would recommend talking to member services and making a formal request for the testing you want. It may not be approved but you won't know until you request it. I unfortunately have several friends who are Kaiser members all living the breast CA dream right now. I don't know any of them who had MRI pre-op. One had a very aggressive DCIS and went from LX to BMX in her course of tx.

Mommyathome,

I would never presume to tell a family member or good friend what they should do in this situation.

If I said "have the SNB" and it turned out that no invasive cancer was found in the MX pathology and the SNB was unnecessary after all, and if the individual developed lymphedema, I would feel terrible about it and feel that I had led this person down the wrong path.

And if I said "don't have the SNB" and it turned out that invasive cancer was found in the MX pathology and a full axillary node dissection had to be done as an additional surgery, and that led to more nodes being removed and the eventual development of lymphedema, I would feel terrible about it and feel that I had led this person down the wrong path.

So if I was dealing with a family member or a good friend, I would give them the same advice I gave you in my previous post.

There is no getting around this. You have to do your own reading and research and thinking and soul searching so that you can figure out what's the right decision for you. No one should presume to know what's best for you - and even if someone offers an opinion (and it's easy to find people who will), the simple fact is that no one but you can know what's right for you to do. The same applies to all your other surgery and reconstruction and treatment decisions. There are so many different variables involved, so many different ways of looking at it, so many different risks and things that could go wrong (but of course hopefully go right)... it's really important that you not make your decisions or set your expectations based on someone else's experience or what happened to them or the reasons why they made the decisions they made, or even what they think is best of you. The two most important things I've learned in all my years on this board are that: First, everyone's experience is different, so what happened to me (or anyone else), whether good or bad, might be completely different than what happens to you, even if we have exactly the same surgery or treatment or procedure. And second, we all see things differently, so what is a concern for me might not be a concern for you, what I consider to be low risk you might consider to be high risk, my list of pros and cons might be completely different than your list of pros and cons.

These are difficult decisions but they are your decisions to make. You can learn a lot by hearing about what prompted others to make their decisions, but there is no shortcut or easy way to get to making your own decisions.

Edited for typos only.

They can identity the sentinel nodes prior to the MX and mark them with titanium markers. If something from the pathology report indicates invasive cancer, then the SNB can be done later. Occult cancer is an issue -- what if there is an invasive component that is not found by the pathologist? It's a tough decision. I had a SNB with my BMX and had signs of early LE that have finally subsided after lots of care and preventative measures. I know it could pop up again though. Best wishes on your decision.

Beesie - I hope that you are writing a book. The information that you give is so clear and given in such detail, I wish that I had had access to it before I started my treatment. A book with just the answers you lay out to people's questions here would be invaluable. Thanks

check into the Pink Lotus website for info n how they did Angelina Jolie's sentinel node marking. Turned out she did not need the sentinel node surgery, but they pre marked the nodes which could be later removed if occult cancer was found.

I did a bmx for lcis and poor family hx and elected not to have sentinel node. It was a good bet as there was no invasive found. Like you, I had a biopsy followed by wide excision prior to bmx. Because of the substantial work up I took the gamble of skipping the sentinel biopsy. But now, the way AJ did it, that looks like a great option.