Weighing options, 2 opinions on diagnosis and treatment.

SiameseX2

Hi everyone,

I've spent the past 2 weeks reading up on DCIS after my diagnosis via stereotactic biopsy. Had first consultation at one hospital, then moved to a large research-oriented institution in a major city for my second opinion and consultation. Send all my mammos and path slides to the second hospital, but they wanted their own mammos anyways.

The diagnosis is basically the same, but the first place thought grade 3, second place thinks grade 2. Second place sees at least double the number of bc patients, including DCIS, and reports less (<10%) re-excisions with lumpectomy because it seems their process for analyzing the tumor during surgery is more advanced (not frozen section, this is all new stuff to me).

It is still not completely certain the lumpectomy/radiation/tamoxifen will be the best treatment. The area of calcifications on my mammogram was about 2.5x1x1 cm, so it might be bigger on MRI.

And the second hospital reports less favorable numbers for recurrences after lumpectomy 35% for 10 years vs 20-30% for 5 years. I'm not sure if they just have a more exact number? Then they report radiation to decrease it by half (versus the first place saying it reduces by 2/3). Both places state Tamoxifen will additionally reduce another 50%.

I know it's very early in this process...I'm not quite sure what to make of these differences. Of course, I want to pick a hospital, surgeon, etc that I like as well as one that is close to home. MRI is NEXT WEEK. Genetic testing was submitted today.

Thanks!

PS The numbers kind of make me crazy since my risk of bc was supposedly 1.5%!

Bluebirdgirl

Siamese, welcome to the community, but sorry you have to be here. This is a great place to get information and guidance, that's for sure. I wish you the best of luck through all of this. If you ever have any questions, feel free to private message me. BarredOwl, one of the gals on here, is always a good source of information, very knowledgeable. Hugs!

MTwoman

SiameseX2, if your final diagnosis is pure DCIS, and you choose LX, then it is typical to add rads and Tamox (for ER+) for maximum risk reduction. I would tend to go with the figures generated by the facility with the most experience in bc, although it would be a fair question to ask one of your team at the BC facility to explain why there are discrepancies, they may be able to easily explain it to you. There is research on DCIS coming out every month, some of which is related to which women have a higher likelihood of recurrence, based on numerous criteria. It may be as simple as they've updated their risk calculations based on research that they've done. I'd be interested in their answer if you discuss it with them.

I had a second opinion on my pathology from the guy who literally wrote the book on DCIS (the first path was at my local hospital). Based on his experience, he made recommendations (due to my DCIS architecture type and young age) that altered the course of my treatment, but ultimately most likely saved me from a recurrence. Good luck with your mri and treatment planning!

LAstar

The two hospitals could be citing their own recurrence statistics, but I've never heard of a hospital actually keeping track of that. More likely, they are citing different studies. You can ask them for their references on specific statistics and look them up online. I was surprised when I was looking up the references for these kinds of studies 5 years ago how small some of the sample sizes were for oft-cited statistics. I'd be interested to hear what studies they are referring to.

If we assume annual risk grows exponentially, a 35% net risk over 10 years corresponds to an average increase in risk of 3.4% per year. A 20-30% net risk over 5 years corresponds to a 4.7% to 6.8% annual increase in risk. Maybe the risk is higher in the first 5 years than in the second five years. It is not surprising to get different statistics from different doctors, but this might give you a ballpark to compare against your own personal comfort level with risk.

Note the difference between recurrence risk (the probability that it returns) versus mortality risk (more pleasant to call it "survival rate", but the probability of death). The mortality rate I was given at diagnosis was 1-2% but really DCIS has a 100% survival rate. It has to become invasive to impact survival.

(Disclaimer: I'm a statistician but I'm no expert on DCIS and may be interpreting statistics incorrectly since I don't have the original study.)

LAstar

Checking on you, SiameseX2 -- have you received the results of your MRI and genetic testing? I hope a clear path forward is starting to emerge.

SiameseX2

Hi LA, MT and Blue,

Sorry it has been so long without a response! I have decided to go with the second hospital (second consultation). It was a no-brainer since they are a research institution, they see double the number of breast cancer patients each year. They also had some great plans to not test the sentinel node unless surprise invasive cancer is found (I teach so need to use my arm for work).

My MRI showed no new findings. The lesion is estimated at 1.7 cm, there is also a small suspicious area nearby (8mm) that took up the contrast material quickly - they want that out too. Genetics testing was also negative, so I am scheduled for lumpectomy next Friday, 5/5.

So going forward, I guess it's all about the surgery and the results! Margins need to be negative, hopefully no re-excisions and no invasive is found. I am a little bit worried as my red blood count is a bit low, no explanation for it except for this! And I have been getting numbness in my right arm/shoulder for a while, I thought it was just overused with all the writing, grading, cell phone use etc. So at this point, I am REALLY looking forward to LX.... somehow!

MTwoman

SiameseX2, thanks so much for taking the time to let us know what's been going on. The initial stages are a bit busy!

Looking forward to LX makes perfect sense. You've gotten your team together, you've decided on your plan (unless new information comes up) and you're ready to initiate that plan. I think that feeling of 'let's get this show on the road' is pretty common I'm glad that you've found a facility that you're happy with and that they've done some extra imaging to determine that something else needs to come out all at the same time. Keeping all crossed for you that nothing in your final pathology report changes your plans and that you health quickly!

LAstar

Fingers crossed for clear margins and a boring path report! Stay busy this week! Hoping you bounce back quickly. It's nice to have it OUT.

SiameseX2

Thanks MT and LA. I also found someone at work who had DCIS removed several years ago, when she was my age. Even though hers was different (smaller, low grade) it is still good to actually see someone who got through all this and is doing fine now.

My impression is that they don't know if it is invasive during surgery, you find out when the path report comes several days later? I actually planned this surgery for a busy time late in the semester - I'll have some papers to grade while I recover.

Since I'm not too good at sitting still, we'll see how this goes. I found myself hauling groceries up to my 3rd floor apartment after biopsy, I just used the unaffected side. I also did a ton of laundry that day while I was off. I'm sure LX is going to hurt more though!

I'm really hoping this is not going to turn out to be the summer of multiple lumpectomies. My pre-surgical bloodwork came back with a low red count, which worries me a bit (and this was before I ditched the Pill a month ago, which was preventing me from getting periods).

MTwoman

Siamese,

I was a therapist at a local community mental health center during my treatment and I went back to work pretty quickly after my lx surgery. I was also on a rotating call nights and weekends and found that work was no physical problem and a great distraction for me. Hoping everything goes as planned!

LAstar

My biopsy hurt worse that either LX!

SiameseX2

Hard to believe a biopsy can hurt more than an LX! My biopsy was OK, they were really nice but it's so awkward being upside down.

Teaching at a university, there are more than enough opportunities for me to keep busy. The only issue is that I've signed up to teach TWO courses starting in mid-June (I normally teach 1 course in summer). The extra money will really help me pay for my portion of the treatments . If I end up converting to MX though, I might have to bail on that plan.

Sitti

Siamese,

My biopsy was also more difficult than the LX. The LX was almost pain free and I was doing everything as usual pretty quick. Wishing you the best.

SiameseX2

So my Cinco de Mayo lumpectomy is done! I arrived early in the morning for the wire localization procedure. Thank goodness you get to sit while they are doing this! You are under compression and numbed up while they insert the pretty small needle, which they remove and then the really small wire is in place. The wire is pretty thin, it didn't bother me to look at it. Also, when the numbness wore off I could feel it sometimes if I moved, but it was just slightly uncomfortable.

Unfortunately, had to wait several hours for an OR due to an emergency. My guests went to the cafeteria for lunch, and to pick up my Rx, and by the time they returned I was awake and ready to go home.

Definitely less painful that the biopsy! I'm only using ice today for pain, but my incision is really small, appears to be less than an inch long.

Sitti

SiameseX2, I'm glad to hear your procedure went well and you are resting. Take it easy over the weekend. Praying you have a good follow-up report.

SiameseX2

Hi Sitti and others,

I received a call with my results which were quite shocking, and I don't have the path report in hand yet.

Apparently all that was found was 3mm of pure DCIS (grade 2) and no invasive. I immediately wanted to know how this thing shrunk to be 1/5 the size seen on MRI, and was told there were also several benign microcalcs in the area that turn out to be hyperplasia (a benign change).

The bottom line is that it is all good news, no more surgery is needed! Although technically I have one positive margin, which is posterior and cells closest to the chest wall muscle. They removed the fascia over the muscle and call this an "anatomic margin."

I feel extremely lucky. I'm eager to see what they recommend in terms of tamox and radiation!

MTwoman

Woohoo! that is great news SiameseX2!

Sitti

SiameseX2,

That's wonderful news, I'm so happy for you. I know you are relieved to have the results and glad the final path report came back with no invasion & even smaller amount of DCIS. Hope the rest of the process proves to be smooth. Hugs!

SiameseX2

MTwoman and Sitti,

Thanks, it's nice to post a positive result here. As you might imagine, I nearly fell off my chair when I learned the DCIS was so small! Talk about an emotional roller coaster.

I imagine that the radiation is still a good idea, that is probably what most folks here would tell me. I don't want to come this far and mess up.

I am now more aware of the many unknowns out there - with 20% of breast cancers being mammographically occult. And some cancers (and DCIS) also not visible on the MRI. Who knows, I could have more stuff going on inside me right now...

...but I couldn't lop off my breast(s) in fear of those things. At this point, I would regret it more than keeping them and dealing with very small chances of problems. We never, ever, know anything 100% anyways.

MTwoman

Hey SiameseX2, I've read on these boards that there is an Oncotype test for DCIS to determine if rads benefit outweighs the side effects/risk, if you're interested. I don't know that much about it, as it wasn't around back 14 years ago when I was diagnosed/treated, but others here do and can explain more if you're interested. I think both Beesie and BarredOwl have posted about that test, so you could ask them - or talk to your RO about it before proceeding.

Poppy-Flower3

I was diagnosed with a tiny bit of low grade DCIS in 2014 and was told I had clear margins but there was still ADH in the margins. It seemed like I didn't need any radiation... it was the slow growing hormonal kind. I cannot take tamoxifen because of the clotting risk ( I have A-fib). I went back this year for mammogram and had core biopsy... this time intermediate grade DCIS. I had lumpectomy but no they could not get clear margins. I am seeing an oncologist on June 7. I was surprised by all of this and feeling a bit down.

MTwoman

So sorry you again find yourself on this ride that nobody wants to take! What do you need from us, how can we help you? ((hugs))

SiameseX2

Hi MTwoman,

Thanks for the reminder about Oncotype, MO told me that they use it when I attended the consultation. I see an order online for a "cancer genetics test" - going to double check that is it.

I think I'll consider the radiation as this thing is so very close to the chest wall (they had me leaning painfully into the mammo machine each and every time). There wasn't enough breast tissue underneath it and before the chest wall begins to get that 2mm margin. Chest wall recurrences seem scary.

Poppyflower,

This isn't the first time I've heard of ADH, since it came up in my research of DCIS and I recall wishing this was "just" ADH. I still don't understand exactly what ADH is, and why they won't say for sure that it tends to eventually become DCIS (but that is what we are seeing). It sounds like your visit with the oncologist is a step in the right direction, but sorry you have to go through it again.

MTwoman

SiameseX2, there are 2 different Oncotype tests. One is to determine if the risks of chemo outweigh the benefits for women with certain types of IDC and the other is to determine risk/benefits of radiation in DCIS.

Poppy-Flower3

thank you everyone for responding. I don't really have a question.... just looking for a connection with people who can relate.

I have small breasts and I just hope to get some good treatment advice on June 7. The surgeon I saw brought up mastectomy and I think my mind went blank... and he told me over the telephone while I was at work.... he said he would call me the next day to ask how incision site looked and all of a sudden he is blurting out stuff like nipple preservation and mastectomy and my mind just froze.😳 thought he was very unprofessional so I am going to someone really well-versed so that is good. I hope they can just go back in and get clear margins and then be done with it.

SiameseX2

Poppy,

I'm sorry to hear this news, especially after you've been through so much already. The day I told my surgeon we can go ahead with scheduling lumpectomy, she told me if this ever recurs, my only option would be mastectomy. I was shocked like you. I asked if we could instead do another lumpectomy (assuming I'd have enough left) and she said indicated that wasn't as likely to work. It seems the standard of care at that point is a mastectomy.

I found this article interesting, although it doesn't apply directly to your situation (since you did not have radiation):

http://www.cancernetwork.com/breast-cancer/managin...

There is also a forum for recurrences which may have some useful info?

MTwoman

I'm not sure it helps either of you, but I remember the shock too. I had already had my lx and was ready to move into rads. In fact, the actual day before I was to go in and get my mapping and tattoo, I got back a second opinion report on my pathology that recommended an mri (which so many women get now, but back then it wasn't always done). Well, I had to think hard about stopping my treatment plan, just to fly out of town and get an mri (we didn't have a breast imaging center in town that did them back then). I finally decided to listen to my 2nd opinion and, low and behold, 2 more areas of concern were found. Long story short, they were both DCIS as well. I initially sort of envisioned 2 more lx, but was quickly told, mx was my only choice left. It took me a few days to get sorted out in my brain (I was 38), but really didn't have an option at that point. I consoled myself that I didn't have to do rads anymore, and with being TN, didn't have any endocrine therapy either. ((Hugs)) to you both!

Poppy-Flower3

thank you, ladies

SiameseX2

MTwoman,

It is actually very helpful to me to know all of these details. Ironically, I am in Chicago, hideously expensive cost of living for so many years - I've been renting since 2010. Now I am only 41, but yes, I can somehow just walk to a place that will MRI my breasts. It is a value that I did not anticipate needing for many years...

I don't want to do rads, and I don't want to use Tamoxifen, but my breast showed evidence of only 3mm of noninvasive cancer. So, here I am. It is also a bit of a compromise for me too. I hope I will be OK with my choice, I liked the idea of MX instead of all of these medical treatments. But with MX, I didn't like the idea of not being able to feel someone touching my breast or it feeling cold to me as my arm rubs across it. Did a lot of research on the topic, and continue to do it, in case things somehow go that way.

TN means?

Icietla

SiameseX2 -- Triple Negative (ER- PR- Her2-). It is one of the more aggressive tumor types.

CountrygirlLeanne

Just curious, why do breast centers schedule your breast MRI according to your menstrual? And isn't that for premenopaus women? If so how do they automatically assume one is premenopausal? I'm 47 have regular menstrual's was scheduled for my MRI tomorrow they called and rescheduled due to my menstrual. Any knowledge on this?