Recently diagnosed with high-grade DCIS -- so many questions

Thanks Beesie...I read your comment in tears...I think I could deal with a mx if I would wake up with a breast and nipples.

I am seeing an oncologist next week, and a pain specialist. I hope these meetings will help me make the right decision. I am very tempted right now since it's a slow cancer to leave it be...and treat it with alternative medicine. I just wish the surgeon was willing just to take out the cancer, but she said it was a matter of time until I dx again. UGH.



Binney4...thanks for the website, but right now, I just can't go there.

Hi Ladies. So many interesting and helpful posts here. I am just wondering if anyone was told they didn't need an MRI with DCIS. I asked my surgeon several times for an MRI prior to my MX and was told, "It is warranted in your case." Well, I ended up with positive chest margins and feel like my doctor would have had a better idea what she was dealing with if she would have let me have an MRI. Just wondering if anyone had a similar experience with their BS.

Nana - Many doctors don't do MRIs with DCIS.  I went to two surgeons for opinions and one recommended an MRI and one did not.  I went with the surgeon who recommended the MRI, and although it picked up two additional areas of DCIS, it didn't pick up everything and I still ended up having three lumpectomies without clean margins and then finally a mastectomy.  Sorry, I don't mean to scare those who are newly diagnosed - I'm the exception.  I did read though that 60% of DCIS patients who have lumpectomies don't get clean margins the first time.  Unfortunately, the surgeon can't see the DCIS, so s/he is basically going in blind.  The wires guide the surgeon to the correct spot and the mammogram or MRI give him/her an approximation of size, but unfortunately even an MRI often isn't sensitive enough to accurately show the extent of the DCIS.

All - A few people were talking about survival rates for patients undergoing mastectomy vs. those undergoing lumpectomy + radiation.  Although the survival rates are similar, the recurrence rates are very different.  With a mastectomy, there is about a 1% risk of recurrence (it should be zero, but it's not), and with a lumpectomy + radiation, the risk of recurrence is about 10%.  Taking hormone-suppressing drugs if you're ER+ further reduces the risk of recurrence.  Approx. 50% of recurrences in DCIS patients are DCIS and 50% are IBC (invasive BC).  Even when the recurrence is IBC, it tends to be caught early, so it's treatable.  That's why the survival rate is basically 100% for DCIS patients whether they initially choose to have a lumpectomy + radiation or a mastectomy.

Hi Barry,

I'm so terribly sorry that you are going through this. I'm sure soon enough you will be on the other side of this, but in the meantime it's so frustrating.

I also have hashimoto's. Most of us with hypothyroidism do. It's very common as you know. I don't have stats on this, but I'm sure that there are countless women who are hypothyroid that have had breast radiation all over the world.

I did not have rads for my DCIS, but it had nothing to do with being hypo. I had several opinions on this and all the docs knew I was hypo and if my pathology was more aggressive, I would have had radiation.

I do not know anything about RSD. Perhaps that is more the reason. I would make sure to double check with your endo or natural path regarding the Hashimoto's. I'm certainly not an expert, but it doesn't make sense to me.

The only alternative stuff I do is the same stuff I did before DX. Some supplements- Vitamin D, fish oil, calcium. Exercise has always been in my life as well as a good diet. I don't know anything about iodine etc. What I do know about your situation is just what I have been reading.

Your body keeps making cancer. Who knows why. It sucks for all of us-those with one cancer as well as several. You have been very fortunate that it hasn't (yet) been more serious. Maybe it's because of the alternative or maybe not.

Because this is the DCIS forum and not the ALT  forum, I want to make a heartfelt suggestion. PLEASE PLEASE treat this. Get more opinions re radiation. Talk to other docs regarding MX. Not a natural path- an MD. Your DCIS DX was serious enough- this is even more so. Even if it's stage 1, it's still invasive. Now it's a different ball game.

I truly wish you peace. A clear head to make the best decisions. I'm sure that your friends and family really love you and want you around for a long time.

Best.

Namaste!

Nana60:  For 20 years before DX I had the experience of many Bx that turned up B9 and one pre-cancer that was treated with local excision.  I knew that if DX with BC that I would choose bilateral if mastectomy was the recommended surgery.  Because my DCIS was in multiple areas my BS said I needed a mastectomy.  He said that because I was going for bilateral mastectomy it was not necessary to get an MRI.  I ended up with a pre cancer in the prophylactic side but do not know "if" it would have shown up on MRI.  It definitely did not show up on mammogram.

Karla

louishenry, thanks for remembering that; you're so sweet! I'm asking my surgeon at my 5-week follow-up tomorrow for the all-clear to start trying SOON! Hopefully Barry will have surgery for the IDC, whether it's lumpectomy or mx... it sounds from her post above that her surgeon is pressuring her to go for a mastectomy... I think when a surgeon is putting pressure to do something you're not willing to do, it might be time for a second opinion!

When discussing recurrence & survival rates after a mastectomy vs. lumpectomy + radiation, we need to specify if we are talking about invasive cancer or DCIS.  The considerations are actually different.

My original comments in my earlier post were directed at voicewriter, who from her posts appeared to be concerned about having a lumpectomy if it turned out that invasive cancer was found in her next surgery.  My follow-up comments were in response to a post from barry, who was recently diagnosed with invasive cancer.  So I was explaining that for invasive cancer, survival rates are the same whether one has a lumpectomy + radiation or a mastectomy.  The reason is because it's distant recurrence (i.e. mets) that impacts survival for those who have invasive cancer and having a mastectomy does nothing to reduce the risk of distant recurrence.  So although local recurrence rates may differ, for those with invasive cancer, distant recurrence rates are the same if one has a mastectomy or if one has a lumpectomy + radiation.  If cancer cells have escaped the breast prior to surgery, having a mastectomy won't make any difference at all.  It's closing the barn door after the horses have escaped.  In fact a couple of studies have shown that distant recurrence rates may actually be lower for those with invasive cancer who have lumpectomies + radiation vs. those who have mastectomies.  

"A local recurrence after mastectomy has about the same prognostic importance as a distant recurrence, and it is often assumed that a recurrence within the breast after radiation has the same implication as any other type of local or regional recurrence. The fact that the overall survival of patients randomly assigned to receive breast conserving therapy and radiation in these studies is equivalent to survival of patients who underwent mastectomy in spite of the higher local failure rate suggests that recurrences confined to the irradiated breast do not have the same prognostic importance as recurrences in the lymph nodes, skin and muscle."  http://www.rsny.org/200_PDFs/GSL-A-NEW-REPORT-IN-THE-TREATMENT-OF-BREAST-CANCER-MASTECT.pdf

"Women with early breast cancer (no metastasis) who have breast conservation surgery (lumpectomy) followed by radiation are less likely to die of breast cancer within 10 years than women who have a mastectomy." http://www.healthcentral.com/breast-cancer/c/78/128782/lumpectomy

Also, to the earlier comments, in many cases the survival rate stats that I've seen that show no difference in survival actually go beyond 5 years or 10 years:  "Women with relatively small breast cancers who were treated with breast-conserving surgery plus radiation therapy were as likely to be alive and disease-free 20 years later as women treated with mastectomy (surgery to remove the affected breast), two groups of researchers report in separate studies published in the October 17, 2002, issue of the New England Journal of Medicine."  http://www.cancer.gov/clinicaltrials/results/summary/2002/mastectomy-versus-lumpectomy1002

This is the DCIS forum so I should have been clearer in specifying that I was talking about considerations related to the choice of mastectomy vs. lumpectomy + rads for those who have invasive cancer. Sorry if I caused any confusion.

For DCIS, there is no concern about distant recurrence (unless a local recurrence is not found until it had advanced) so the parameters on which to compare a lumpectomy + rads vs. a mastectomy are slightly different.  

Pure DCIS has a 100% survival rate if there is no recurrence.  50% of local recurrences of DCIS are not found until they are invasive. Overall the survival rate of those initially diagnosed with DCIS is 98% - 99%.  Since there is no risk of distant recurrence from DCIS, obviously this means that the women who do not survive had invasive local recurrences.  Therefore, for DCIS patients (unlike patients with invasive cancer), it's a local recurrence that is linked to survival rates.  

It's true that the local recurrence rate generally is higher for those who have a lumpectomy + radiation vs. those who have mastectomies, but we have to be careful when we start quoting numbers. Lots of studies have shown what that the recurrence rate after a mastectomy for DCIS is in the range of 1% - 2% (assuming acceptable margins). The studies on recurrence rates after a lumpectomy + radiation are not nearly so clear or definitive. It may be true that the "average" recurrence rate is around 10%, but I've seen studies that quote a range from as low as 3% to as high as 60%. So any discussion about the merits of mastectomy vs. lumpectomy + rads for someone with DCIS needs to take into consideration the specifics of that individual's diagnosis and pathology - using the 10% average is almost sure to be misleading, either favorably so or unfavorably so. 

voicewriter...hey, I'm sorry for hyjacking your thread. I didn't mean to. I assumed what Beesie wrote was for anyone considering a mx or a lumpectomy and based on what she shared, I thought it answered questions I had at that time. I should had figured that she was sharing from a DCIS perspective. I was dx with dcis twice. I really thought if i was ever dx again it would be another DCIS dx.

In whatever choice you make voicewriter, please know that whatever treatment you choose, you must always be careful to continue screening. Last May they found nothing, and in December they found something.