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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Process of making treatment decision need help!

Topic: Process of making treatment decision need help!

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

Posted on: Jul 5, 2017 06:38PM

piano wrote:

I am a 44 yr old female recently diagnosed with noninvasive DCIS after excisional biopsy. I have an aunt paternal side diagnosed with breast cancer at 46 and passed away 8 yrs later. My Br1 and 2 tests were negative. My Dr told me my recurrence risk is low and discourage me from mastectomy but she said Its my choice to decide. She said radiation would be better and its usually standard Tx for DCIS follow with tamoxifen. I am in fear for future but thankful that I caught it very early. I could not make decision, so then DR is ordering Oncotype gene test. Has anyone having similar dilemma like me? and if Oncotype test result is very low, then I can not have surgery for mastectomy on my Lt breast? I am leaning toward mastectomy then radiation but if result is low, would I be qualify to have mastectomy surgery? Please let me know if anyone had similar story.


Dx 6/12/2017, DCIS, Left, <1cm, Stage 0, Grade 1, ER+/PR+, HER2-
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Jul 5, 2017 11:11PM MinusTwo wrote:

It's your cholce to have a bilateral mastectomy. Depending on how your doc codes the requests, you shouldn't have any trouble with insurance.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 5, 2017 11:17PM jinmo wrote:

I was diagnosed in November of last year and chose the mastectomy. I am 52. You can see below that my diagnosis is similar to yours, just grade 2 DCIS instead of grade 1. I was offered the same choice as you, rads + 5 years tamox, possible hysterectomy later. I did the gene testing and had no known markers.

I had a bilateral mastectomy, no reconstruction.

I just didn't want to mess with worrying about more mammograms, more biopsies, the stress of "surveillance" etc. anymore, and decided I'd rather deal with surgical side effects instead of rads/meds side effects.

It was not a walk in the park, but I am pleased with my results and happy with my choice. This is just a hard decision, no matter what.

Note, if you are in the U.S., you can demand that both sides be done, for symmetry. Insurance is required to cover this under the law.

Sending you support no matter what choice you make.

jinmo


Dx 11/28/2016, DCIS, Left, 1cm, Stage 0, Grade 2, 0/5 nodes Surgery 1/16/2017 Mastectomy: Left; Prophylactic mastectomy: Right
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Jul 6, 2017 10:18AM Annette47 wrote:

Just to clarify something - you said you were leaning towards mastectomy and then radiation, but in the vast majority of DCIS patients, mastectomy is not followed by radiation as it simply isn’t necessary and radiation would add some risks without adding any benefits.

Lumpectomy plus radiation overs the same long-term survival as mastectomy; although there is a higher chance of recurrenceit is usually found and treated early enough that it doesn’t affect survival.

I chose a lumpectomy; mastectomy may indeed be the right choice for you, but I get the feeling from your post that you are not necessarily completely clear on the risks associated with each choice and I would urge you to be very well informed rather than making a decision out of fear that you can not rescind later.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Jul 6, 2017 11:31AM piano wrote:

Thanks for the reply Anette47, your diagnosis is almost same as mind.

As you may know I have wide option to choose but standard Tx out there now is lumpectomy follow by radiation. During my excisional biopsy, surgeon cut out more so she said it was like lumpectomy. She encourage me to do radiation. But I just dont like radiation due to unknown side effect in the future. My other option is mastectomy or do nothing but go on a pill Tamoxifen. Please share with me how you have chosen your tx option and are you happy with it?

I met with all the doctors but now its me that needs to decide. There is possible complications for both radiation and mastectomy. I just need to hear more experiences.

Dx 6/12/2017, DCIS, Left, <1cm, Stage 0, Grade 1, ER+/PR+, HER2-
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Jul 6, 2017 12:46PM MTwoman wrote:

piano, I do know that this is a difficult decision for many women. There is actually a thread on the DCIS forum where women have discussed why they chose what they chose to clarify the issues. If that feels helpful to you, it is here: https://community.breastcancer.org/forum/68/topics/806074?page=8#idx_222


Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Jul 6, 2017 01:14PM candles1 wrote:

I chose one-step BMX/reconstruction with no regrets. I do think that BMX is not the norm for DCIS; it seems like more women with DCIS choose the lumpectomy/radiation/hormone therapy/surveillance combo than choose "one and done" BMX.

But...I am TERRIFIED at the direction medical surveillance is heading in. The lump/surveillance path is 100% dependent on how good your follow up surveillance will be. I read more and more about how the medical and governmental entities are trying to save $ and issue findings that "less is more" in so many areas of medicine.

With the lump/surveillance route, there could come that one day that your cells decide to create a recurrence. 50% of the time that recurrence will be an invasive cancer. I think right now the mammos are done every 6 months for 5 years after the lumpectomy. That may or may not satisfy most patients re: catching something really early, but what if medicine/government decides at some point that every year is really good enough? Every other year? Etc.

Medical standards are a moving target. Laws change. Insurance obligations change. The statute requiring that all of this be covered could change. I just felt more at ease knowing that I did everything possible at the earliest possible moment. With DCIS, I could choose immediate over the muscle reconstruction because the lesion was so early and my skin had never been radiated. I would not have the same cosmetic choices if I recurred, and possibly not even the same insurance coverage for the procedure (which some future statute/law could deem purely cosmetic).

Yes I'm a worry wart. Most DCIS is fully cured regardless of the path you choose.
Dx 11/8/2016, DCIS, 1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
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Jul 6, 2017 02:34PM Annette47 wrote:

Since you asked, I chose a lumpectomy, along with radiation and Tamoxifen because for me, a mastectomy seemed too radical for a spot of cancer the size of a grain of rice. My surgeon mentioned it as a possibility, but she too felt it was unnecessary. Sensation is important to me and I didn’t want to give that up without a good reason. Radiation was recommended both because of my age (45 at the time) and because I did have a tiny spot of invasive cancer along with the DCIS. For what it’s worth, I’ve had little to no problems from the radiation. No real skin issues during treatment, just some swelling and fatigue both of which resolved. No long term problems either, although at 4.5 years out, there is still a way to go, I guess. Today’s radiation protocols are much safer than in the past, with much less risk of long term issues such as damage to heart and lungs.

The Tamoxifen was considered optional - my oncologist left it up to me. The main benefit I get from it is most likely the prevention of a new cancer, as the surgery and radiation should have taken care of the original one. At my age though, and still being pre-menopausal, I do worry about eventually developing a new primary, which is why I chose the Tamoxifen. Had I chosen a mastectomy, which would have eliminated most of the breast tissue I might have made a different decision. Part of my reasoning was that I don’t have any particular risk factors for the more serious side effects of Tamoxifen (blood clots and uterine cancer) and the “quality of life” ones go away once you are off the drug, so I went into it thinking if it was too unpleasant I could quit. It hasn’t been though - just some minor annoyances like a vaginal discharge and hot flashes (which at my age I would probably be having anyway!).

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Jul 6, 2017 02:39PM - edited Jul 6, 2017 02:39PM by Peacetoallcuzweneedit

I am in the process of recovering from my bi-lateral MX June 1st with tissue expanders in place and just got scheduled for my exchange to implants August 1st. I was dx May 6th and needless to say considering the time frame, this journey still seems surreal. However, these damn tissue expanders let me know constantly that this is not a dream.

My original dx was DCIS ~6cm in my left breast high grade--> 3. There was a spot on my right breast ~3cm that was biopsied as lobular neoplasia intermediate grade. I opted for a bi-lateral MX because the stress of knowing this was inside me was way too much. However, with reconstruction path I chose, I will still have risks associated with implants...trust me none of this is a cake walk with a clear cut answer.

The Mx went as planned, and final pathology showed no invasion from the DCIS on my left breast and sentinel node was clear. However, in my right breast the lob neoplasia was confimed BUT there was DCIS AND Invasive ductual carcinoma (IDC) micro-invasion that my biopsy did not show/test that area. Since you had a surgical biopsy a surprise like this is highly unlikely...I am not doing hormone therapy of any additional treatment because of risk vs benefit. (my sis died of uterine cancer - tamox is not an option and tumor board and BO + BS agreed the risks were too much)

Daily still is some anxiety and questions about long term, and I think that is part of the ball game. These boards are full of women with their journeys and thank GOD for the opportunity to come together like this. I find posts that fill my eyes with tears, and some of the humor brings me a smile, and a continued deep appreciation and awe of the human spirit. At the end of the majority of posts most women say --->> YOU have to feel good about what YOU decide...and I can't stress that enough and trust me that is a journey as well.

If you have any questions about the process of MX and recon to implants I would be happy to help. I don't regret my choice, but a MX is certainly not the right answer for all.

5/2017 Left Breast DCIS 5+cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, ER+/PR+/ HER2- 6/2017 BMX, SNB left, Reconstruction with TEs current
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Jul 6, 2017 04:30PM LisaAlissa wrote:

Since you've recently been diagnosed with DCIS, you might also want to read Beesie's posts on "A layperson's guide to DCIS", as well as her discussion of deciding between Mastectomy & Lumpectomy "here." The second link give you a list of things that you may want to consider as you make your decision.

Both are very helpful, as Beesie is one of the best researchers and most articulate writers here.

HTH,

LisaAlissa

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Jul 6, 2017 08:45PM Legomaster225 wrote:

Peacetoall, are you having radiation on your breast that had the IDC? I too had "surprises" in my "clean" breast. I chose BMX with preoccupied implants. Thank God I did as all the diagnostic tests did not find it. I was planning on radiation in the cancer but now wondering if I'm going to be doing it in both sides. I just read my path report online. I'll meet with my doctors next week for the plans forward.

These decisions are not easy for anyone.

Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, ER+/PR+ Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Surgery 6/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 8/21/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/17/2017
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Jul 6, 2017 09:31PM debiann wrote:

Some people choose mx because they want to avoid radiation and its possible side effects. Something to consider.

"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/2/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/7/2014 Herceptin (trastuzumab) Chemotherapy 5/7/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/28/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/4/2014 Arimidex (anastrozole)
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Jul 6, 2017 10:32PM - edited Jul 6, 2017 10:40PM by ChiSandy

Unfortunately, these forums have many women who went with BMX and still ended up needing radiation. BMX is unlikely to require radiation, but it's not a guarantee. And there are women on these forums who had DCIS, BMX and still had mets years later.

I had very few SE's from radiation, and those I had were extremely mild—so mild that two weeks later I was able to take a European cruise involving many strenuous walking tours. And except for a darker areola, even those SEs disappeared.

My cancer was invasive, 1.3 cm, and grade 2, and I still chose lumpectomy + rads, followed by 5 years of an aromatase inhibitor (letrozole) because I was 10 years post-menopausal (and the risk of blood clots from Tamoxifen was too high, given that my family history is a cardiovascular train wreck). Most mets come not from undiscovered tumor cells left behind in the breast after lumpectomy (or normal cells in the breast that go rogue after lumpectomy), but from tumor cells that might already have been sent out years before diagnosis of the original cancer and lain dormant.

But I can understand “scanxiety,” though my followup mammos didn’t faze me. Many women opt for the “peace of mind” they believe BMX will give them. With family history, genetic mutations, or large tumors (or widely scattered multifocal ones) in small breasts, mastectomy makes sense and many women, even those who have no medical reason for prophylactic contralateral MX, opt for it anyway for the sake of symmetry—either remaining flat, or reasoning (accurately) that dual contemporaneous reconstructions more often turn out similar.

However, I’ve seen too many instances of throwing everything in the arsenal at one’s tumor and then getting local recurrence, new primary tumor or even mets. I find that “peace of mind” is often illusory and never guaranteed.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Jul 7, 2017 12:55PM Peacetoallcuzweneedit wrote:

No legomaster ---> No radiation. No chemo. No endocrine therapy.

Agreed about reading posts from Bessie....very helpful....


5/2017 Left Breast DCIS 5+cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, ER+/PR+/ HER2- 6/2017 BMX, SNB left, Reconstruction with TEs current
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Jul 10, 2017 06:27PM jjdrury1007 wrote:

Every family member on my father's side has passed away from cancer. My father died Feb 5th, and I was diagnosed with DCIS-MI on 4/25. I opted for a double mastectomy and I did not care about the cost. I was 41 when I was diagnosed and I am now recovering from my Bi-Lateral Mastectomy (at 42). I have four children 19, 11, 10, 9. Ask a ton of questions and make a decision that is best for you and your family. God Bless you! <3

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Jul 10, 2017 06:31PM jjdrury1007 wrote:

Wow, we have the same story. I had my Bi-Lateral masectomy on May 31st. I am in the reconstruction stage and honestly it sucks big time. I am on this board to find others who are going through what I am. Because there are times that I think I am the only one...

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Jul 14, 2017 01:05PM suzydthatisme wrote:

I was diagnosed with DCIS (grade 1). My oncologist game me these stats: 97% chance of no recurrence with radiation, 92% chance of recurrence with no radiation. I'm nearly 60 so hormonal treatment isn't something they would consider. She said that there are risks associated with radiation, especially if the DCIS was on the left side. I opted for no radiation. She was pleased with that decision, I think. She assured me that they will watch me like a hawk to monitor for recurrences. I trust their decision - I am followed at a major cancer centre. It's scary, this whole thing.....but in the end my way of coping is to try to forget it's happening and get on with my life. If it comes back, I'll deal with it. Anything could take me down at any time......DCIS is probably the least of my worries LOL. I cherish every moment of life now. Crap like this reminds us of life's priorities. God bless and take care.

Surgery 7/12/2016 Lumpectomy: Left Dx 9/6/2016, DCIS, Left, 1cm, Stage 0, Grade 1
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Jul 14, 2017 01:47PM Lula73 wrote:

we can share our stories all day and we will all have a different opinion on what's best. In the end only you can decide what's best for your own peace of mind. I opted for BMX with immediate DIEP flap/natural tissue reconstruction and anti-hormone therapy for 5 years. I will also be having my ovaries removed later this year (genetic testing came back positive for ovarian cancer risk). The BMX and secondarily the choice on type of recon & ovary removal were the choices I felt most at peace with as I know I've thrown everything at this that I can from the start. So my advice is investigate your options (lumpectomy w/rads, UMX or BMX with or without recon, types of recon, and/or anti-hormone therapy), make sure you know what followups and side effects go with each and go with the option that leaves you most at peace.


-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 16, 2017 05:46PM - edited Jul 16, 2017 08:36PM by kittenknit

Suzy, is this a typo?

"My oncologist game me these stats: 97% chance of no recurrence with radiation, 92% chance of recurrence with no radiation."

I'd like to know where she got both those stats, but especially the latter, 92% recurrence without radiation. I haven't seen that anywhere.

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Aug 4, 2017 12:46AM speech529 wrote:

DCIS and it's treatment cannot be one size fits all. Breast cancer is a multi focal disease and each patient is different. I was dx'd at age 51 with DCIS; lesion was grade 3 with high grade comedonecrosis so I opted for a unilateral mastectomy. This was after undergoing a lumpectomy that excised a large section of my breast tissue and I had positive margins. Because my surgeon recommended a second surgery to remove more breast tissue, followed by radiation and a poor chance for reconstruction, I opted for the MX. My breasts were very small (AA) so the lumpectomy was almost half the tissue there. I was able to have immediate reconstruction. I also had a hysterectomy & oopherectomy at the same time ( mother died of ovarian cancer; maternal aunts with BC).

These decisions are very difficult, personal and very individualized. My decision was appropriate for me.

I am an information gatherer, it helps me to feel equipped.

I wish you peace with your decisions and an excellent outcome


Keep going. Take a rest when you need it. Then get going again. Dx 3/27/2010, DCIS, Stage 0, Grade 3, ER+/PR+, HER2-
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Sep 20, 2017 09:09AM Linwentz wrote:

I was diagnosed with DCIS grade 3 ER/PR negative in my left breast In July. I opted for a lumpectomy. The first one left me with 2 unclear margins. I had the re-excision surgery two weeks ago and still have one unclear margin. Another re-excision surgery is scheduled for this Friday but I am waffling. I am strongly considering a Bi-lateral mastectomy instead. My BS said if this re-excision surgery is not successful I will need a mastectomy but he clearly favored another lumpectomy.

My decision to have a lumpectomy vs a mastectomy was an informed one. I read many many articles and agree with LisaAlissa that Bessie's posts were extremely helpful. But now I am getting weary. The lumpectomies have been easy--especially the second one--but I am beginnining to understand just how illussive this disease is.

I had extensive imaging done--mammography, MRI, ultra sound--& I naively thought that it would be easily located and removed. Not so the case.

So now do I I cut my losses and opt for the ultimate clear margins with a mastectomy & skip a second re-excision? I agree with what Chi Sandy said that peace of mind is illusory & not guaranteed. But I am not finding peace of mind right now at all and am not sure I will have it even if the second re-excision surgery is successful followed by rads. I don't trust this cancer that has invaded my life. It is very sneaky. And even if the pathology report says it is gone... I don't know if I will completely believe it.

As I have said, I am becoming weary. My positive attitude is waning. Today is Wednesday. I met with my BS yesterday... 2nd re-excision is scheduled for Friday. Any feedback would be most welcome

Dx 7/12/2017, DCIS, Left, 4cm, Stage 0, Grade 3, ER-/PR- Surgery 7/28/2017 Lumpectomy: Left Surgery 9/12/2017 Lumpectomy: Left Surgery 9/22/2017 Lumpectomy: Left Radiation Therapy 10/23/2017 Whole-breast: Breast
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Sep 20, 2017 10:16AM - edited Sep 20, 2017 10:50AM by TrmTab

Lin

As you can see from my signature block, I had 2 LX followed by MX. My BS would not do another LX...at the time I was very disappointed as I had 1200cc removed at MX and only 2 slides of pathology came back as having DCIS. So my MX did seem like brute force over the top. That said, I didn't have to do radiation and I am very grateful for that. Since I had 2 LX before MX and there was no pathology of any micro invasion I did not have any SNB so also have no risk of lymphadema...that was a major point of discussion with the BS. If one elects for MX from the start, then the standard of care is MX and SNB. Having already had 2 procedures with no invasive I argued that I had more information so why risk lymph issues...

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 12/21/2015 Lumpectomy: Left Surgery 1/10/2016 Lumpectomy: Left Hormonal Therapy 2/5/2016 Arimidex (anastrozole) Surgery 6/3/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 1/1/2017 Arimidex (anastrozole) Surgery 9/8/2017 Reconstruction (left): Silicone implant
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Sep 20, 2017 10:45AM MTwoman wrote:

As you can see by my sig line, I had hormone receptor negative DCIS and opted (initially) for lx as well. I had one VERY close margin (not even 1 mm), and was wrestling with what to do about it, when I got a second opinion on my pathology from a dcis expert who recommended an mri, as my architecture type tends to be multi-focal. Sure enough, there were 2 more separate areas in an entirely different quadrant. I was literally supposed to go into rads mapping the day after I got the second opinion. Had I done so, and not gotten the mri that found remaining dcis, it is possible that I would have had a recurrence at some point; which would really have just been cells that hadn't been removed. Once the other areas were discovered, mx was strongly recommended as my only choice for maximum control (as well as aesthetics). I've now been 14 years NED and I am regularly thankful for the astute second opinion that may have saved my life. It is a sneaky disease. I am so sorry you are having to make this decision at this point, but it is a chance to (once again) review your options and pick the treatment that makes you feel the most at peace (I know, I know, that's a hard ask). warm ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right

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