A case for rads - or not?

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Anonymous
Anonymous Member Posts: 1,376

I'm going to meet with my new (better) MO in 2 days. I'm 58, stage 1A. 0 BC in the 1 SLN removed before my BMX last month. Final path report said my DCIS in my LEFT breast was solid & cribriform type, nuclear grade 2, and necrosis was focal, small amount. IDC of only 1.5mm microinvasion size was found hidden within the 9.0x3.5cm of DCIS specimen removed. BS told me she removed it ALL, and that it was DCIS (only) to the chest wall, and IDC hidden within it. Here's MARGINS info on path report:

Invasive Carcinoma: uninvolved. Closest margin: 1cm, to the deep margin.

DCIS: positive for involvement at the deep margin & radial margin at 1 o'clock.

Skin & nipple not invovled; chest wall: skeletal musicle is absent, NOT involved by invasive carcinoma. 

BS took great pains to show me (using a cutaway diagram of layers of the skin) how she got all the DCIS out, up to (but not including) the chest wall itself, and the 1.5mm IDC had good margins around it. She also said that DCIS is NON-invasive, and cannot "penetrate" into the chest wall/muscle. Reason I chose a BMX was to AVOID rads. (Chemo was nixed, as its risks outweighed any benefits, per former MO I saw).  

In my case, I am VERY concerned re. rads with SEs as possible "fallout" post-rads (I had a near fatal heart attack 5 yrs ago, and it's my L breast that would be "rad-ed"); I'm very active (jogging) and was DX'd 2.5 yrs ago with early osteopenia (thus rib fractures/pain post-rads would be a real threat to my quality of life - not to mention LE issues!!); also am a former smoker (quit 10 yrs ago, after 27-yr habit; SE lung issues from rads concern me there, too!)... oh!! and last, but by NO means least -- the terrible SEs I'll have to put up with for next 5 yrs, for having to take 2.5 yrs of Arminidex + 2.5 yrs of Tamoxifen. Ugh..!!! Also, biggest fear is if I DO get a recurrance down the road, I cannot have rads again in same (likely) area? What's left after that, then??  Would a BS need to cut off some of my chest wall muscle? I'm NOT ready to go on disability - yet!  One of my cousins is a nurse; he suggested I ask my new MO this week what SHE suggests as "standard of care" in MY case.

So... I'd appreciate any input you all may have here... sure as heck it's true, that BC is different in all of us, true! On top of that, cancer center is 30 min drive - and I have to return to work in 2 weeks from now! I worry what (at least) 50 hours off w/o pay (FMLA) will do to our near-poverty budget! I'm screaming yellow zonkers here!!! :( BS left tissue on both breasts, as I still can't decide on reconstruction at a future date.... is this something that I CAN refuse, w/o jeopardizing my "standard of care"??

Lastly, I was told by my former MO and RO she referred me to, that having rads post-BMX does NOT affect my survival... only local recurrance... but was NOT given any % of figure as to what or how much reduction of local recurrance I could reasonably hope to expect.... (does this sound like overkill or a way to get rich quick from y/t?)

Forgive my venting... and I DO appreciate any help or insight in advance!! :)

Comments

  • coraleliz
    coraleliz Member Posts: 1,523
    edited May 2013

    I think what you are saying is that RADs are being suggested because margins weren't clear of DCIS. Not sure about DCIS.

    I had a BMX for bilateral BC & hoped to avoid RADs. I ended up getting RADs on both sides(chest wall & axilla). I stopped on the way home & ran each day after RADs. I was concerned about possible rib fractures. A couple of weeks after RADs ended, I went oncamping/waterskiing/wakeboarding/tubing trip. All I felt comfortable doing was hanging out on the beach. My RO didn't think it would be a problem tho. I'm thin & don't have much padding.

    As for your cardiac history, can you run it by your cardiologist? I'm a RN & have worked in cardiac care areas for most of the last 25yrs. I'm just not seeing very many women with BC history.

    Just my thoughts. I really don't have a good understanding of DCIS margins. Hopefully someone will come around with that knowledge.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2013

    hi, it sounds like you have a complicated situation.

    I would get several opinions if you can.

    I did have fatigue and significant swelling from rads. (And yes LE risk does go up with rads.)

    I did *not* have any bone pain, and the blistering went away in about a week.

    I have osteoporosis, have never heard about risk of fractures from rads or problems with jogging.

    Good luck!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Thank you, Ladies - for your kind and VERY valued input. Yes, unfortunately, I'm kind of in a "shaded gray area" in my case. Beesie, thank you for the great links of info! I'll print them and bring them to my appt when I meet w/my new MO tomorrow ;)

    My big fear (other than losing much-needed employment income to just survive) is if I DO have a recurrance down the road (I'll run this by my MO), and if I have RT now, what's to happen down the road? I had a BMX... and I really do not relish any idea of losing chest wall/pecs muscles if I may get a recurrance and then will need RT at that point (since RT can be given only once in a lifetime, to same area/left breast). BS did leave some xtra breast tissue in event I opt for future recon (not sure I wanna do that one!)  I'll keep you posted. From what I read on those links, I believe the likelihood of recurance % is pretty low - which is a gamble I'll have to take.

    Having to go on 5 yrs of HT drugs (both Arminidex & then the Tamoxifen) and the likely hell I'll encounter from their respective SEs will more than enough for me... 1 of the ladies in my BC support group on Monday asked for any help (she should have come here to our site) re. Arminidex... she stated she just recently gave it a 2nd try, but now decided to opt out of that med, due to horrific side effects she mentioned (that would send me onto permanant disability). Sad to say, after she said that, the whole room of 22 BC survivors went silent... I can understand her "need to maintain quality of life," and she said she "has to go on living a good life, as best as I am able to do so, without SEs or fear." I applauded her (secretly) for that! :)

    Yes, I know, we're all different, and the HT I just have to try (being strongly ER+/PR+), but (like that woman said) it's all a balancing act between "quality of life" issues vs. something that should be helping us in our war against BC! ;) I, for one, have to work a full-time job (it's very low pay and very high stress, where I have no "control" in my work in a call center (30 min lunch, no breaks, 800 calls a day, too much sitting, getting yelled at for being "bathroom" for over 5 minutes, yada yada)... but that's another story -- the silver lining of me getting BC is now to re-examine my life & search for alternate, better work ;) so I need to be "fully-functioning". (I have no doubt it was xtrme work stress that gave me my BC - as it did to 3 of my fellow PBX co-workers!!) I'll keep you all posted after I meet with my new MO (since she works kind of alongside the RO I saw recently, who recommended RT without actually speaking to my BS), I'll be not surprised if she also recommends HT, but I will get some hard answers this time and some stats. Thank you, "please stay tuned...." :)

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2013

    Turquoise, just a comment here on one of your concerns  

    My big fear (other than losing much-needed employment income to just survive) is if I DO have a recurrance down the road (I'll run this by my MO), and if I have RT now, what's to happen down the road?

    You want any stray cells irradiated now, because its those cells that can lead to a recurrance down the road. 

    Just my understanding--I hope Beesie will drop by and comment further.

    Liz

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2013

    Turquoise, Liz is right.  The way that a recurrence develops is if any stray cancer cells remain alive in the breast or against the chest wall after surgery.  At the time of the surgery, there may be so few cancer cells left that they aren't visible on any imaging but over time, as these left-behind cancer cells continue to develop and multiply, they eventually show up as a recurrence.  This can happen even with DCIS cells, and in 50% of cases, DCIS recurrences are not found until the cancer cells have evolved to become invasive.  So leaving DCIS cells in the breast can in fact lead to an invasive recurrence.

    Radiation has a track record of reducing recurrence risk by approx. 50%.  In other words, radiation is about 50% effective at killing off any rogue cancer cells that might remain in the breast after surgery.  For someone who has large clean margins after MX surgery, the likelihood that some cancer cells still remain in the breast is pretty slim.  If the entire area of cancer was nowhere near the chest wall or the skin, it's unlikely that any cells will be left against the chest wall or skin.  This is why those who have good margins after a MX generally have a very low recurrence risk.  If the risk of recurrence is only 2%, then the 50% benefit from rads is only 1%.  Rads, like all treatments, comes with risks.  And this is why rads is usually not recommended after a mastectomy (whether for DCIS or even node-negative invasive cancer) if the surgical margins are good.  The recurrence risk in this situation is already so low that the benefit from rads will be very small, not worth the risks from the treatment.

    In your case, you know that you have positive margins in two areas.  So this means that it's almost a certainty that some DCIS cells remain in your breast.  What you don't know (and can't possibly know) is: How many DCIS cells remain; just a few or many?  If it's just a few, will they die off on their own, or simply go into remission and never bother you again?  Or are some of these DCIS cells healthy and in active growth mode? And if they are and they do continue to develop, will you catch the recurrence before it develops into invasive cancer?  If you have rads now, will the rads be successful at killing off all of the DCIS cells that remain in your breast?  Or will you have a recurrence regardless?

    Unfortunately it's not possible to know the answers to any of these questions. Both of your options present risks and a bunch of unknowns. So you have to access the situation and decide which path is the best for you.  Rads now, to reduce your recurrence risk by 50%, or no rads, hoping that no recurrence develops but if one does, that it is caught while still DCIS.

    As for what your recurrence risk might be, here is the info from the 4 studies I linked earlier:

    • 5 (16%) of 31 patients with a surgical margin of ≤2 mm after a MX for DCIS developed a recurrence vs. only 1 (2%) of 49 patients who had margins >2 mm.  5 of the 6 patients who had a recurrence had high-grade disease and/or comedonecrosis and all 6 patients were less than 60 years old
    • Of 142 patients, the overall recurrence rate after a MX for DCIS was 1.4%, with a recurrence rate of 4.8% for those with positive margins, 4.3% for those with close margins, and 0% for patients with negative margins.
    • The overall rate of chest wall recurrence among 193 women who had a MX for DCIS was 1.7%.  The rate of recurrence was 3.3% for high-grade DCIS. There were too few patients with positive margins to draw any firm conclusions.
    • Among 211 women, there was a 0.9% recurrence risk after a MX for DCIS, i.e. two women had recurrences.  Both of the women who recurred had surgical margins of less than 1mm.

    .

    So from this, I would venture to guess that your recurrence risk, having high grade DCIS and positive margins, is at least 5%.  It could even be as high as high as 20% (based on the first study that showed a 16% rate for those with <2mm margins; your margins were positive).  Your new MO won't know what your recurrence risk is, but this is the discussion that you should have with him; hopefully he'll be able to provide an educated guess. 

  • Rockym
    Rockym Member Posts: 1,261
    edited May 2013

    I was going to say with DCIS, no nodes, no rads might be alright.  I am from a less is best mentality.  I was grey on chemo so I know the decisions are rough.  They are also YOUR decisions and you have to be comfortable in the end.

    Since there was IDC and you did the MX, it is still up in the air with the no nodes, no rads.  I suppose your age might make a difference.  If you are young and you didn't hit it with chemo then you may want the rads, tamox route.  If you are older... choices will differ.  My guess is that "if" you did get it again... having past rads will be your least of your worries.  My guess is you'd be in a crappier place since your breast tissue is now minimal.

    Just my thoughts... you asked.  My feelings are based on my past research and just how I feel about the whole cancer thing. :-).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Thanks again, Beesie. Your info and illustrations are really helpful to me! Here's something weird, too: 1st path rept I got (after my BX 2 months ago, a month before my BMX), the pathologist said my DCIS was a nuclear grade 3. In that same report, no IDC was noted/found (not surprising, from what my med team told me). However.... in my final path report post-BMX, the pathologist for the final report said the DCIS was nuclear grade 2.

    I wonder why?

    Do you think a nuclear grade 2 would give me "better odds" in being able to decide to opt out of RT? Thank you...!! :)

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