LE and Rads?

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Lymphedema

Really concerned that a course of rads (6 weeks, which my former MO thought I may need) will bring on LE, from a few posts I've read on these boards. How common is that? In my case, I had zero nodes involved, 1 of my SLNs removed had zero cancer at time of my BMX. I meet with my new MO (he's great, was my mom's LC MO 4 yrs ago) in 2 days from now, so I appreciate your input and feedback (I'm in the "gray area" for having to do rads, and I'm trying my darnedest to NOT having rads done). Thank you....!

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited May 2013

    I can't imagine why anyone has suggested rads to you. It was my understanding that having mastectomy would make rads unnecessary. (Assuming nodes are clean, like yours. Mine turned out to have cancer cells after all, so I had to do the rads anyway.)



    Yes, radiating the lymph nodes does increase LE risk. So avoid it if you can. If it's unavoidable, be sure to meet with a LE specialist ahead of time so you can educate yourself on the things you can do to lower your risk, get some baseline measurements done so that if there are changes you can catch it early, and get fitted for a sleeve to wear if you need to travel by air.



    Also check out the http://www.stepup-speakout.org/ website for lots of great info on LE prevention, early detection, & treatment.

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

    I had Mast. and RADS. I believe theres more to it than Mast. = No RADS. It would be dependant on your Dx overall like Staging, how close your margins were. Example, my tumour was very deep. I had close but clear margins.

    I also believe RADS very likely caused my LE, and at the very least tipped the balance in that direction. Others have a different story though. I think a lot depends on our make up and now theres studies being done in that direction.

    ALl the best with your decision. Im sure others will weigh in.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    I used to work for a rad onc and we only radiated women after mastectomy if the tumor was large, or there was a recurrence.



    Standard whole breast radiation delivers a fairly high radiation dose to the level 1 and 2 axillary nodes.



    Ask a lot of questions: what is the criteria/ indication for needing radiation in your case? Where and how is it proposed to be delivered?



    Musical, there was an article in the New England Journal of Medicine that looked at clear margins and stated a single cell of clear margin was enough. Defied conventional wisdom, it's from about 6 months ago

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

    Would you have a link to that article Kira? Sorry, not sure what is meant by "a single cell of clear margin was enough" Im asking ... enough for what?

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    I have LE but did NOT have rads.  Just looking at your stats, I can't imagine having radiation but everyone is different.  Do LOTS and LOTS of research. Once you decide, you are stuck living with it.Wink

    Good Luck!

    *EDITED TO ADD:  I'm sorry- I did not see the IDC, just the DCIS. That changes the picture.  Just research carefully !

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Are rads being suggested for the chest wall or axilla?

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

    Thanks for your replies, friends :)  Dr. X (RO) didn't say, but I guess I can safely assume (you can check my recent posts for more info on my DX etc.) that it'd be rads to my left breast area chest wall. I would take it for granted that if I DID do rads, it'd never be in the lymph node area (armpit?), or such -- since the 1 SLN my BS removed just before my BMX showed zero trace of any cancer (that was good news to me)! I don't want to court even any near idea of going on disability - ever - or even having to change my active lifestyle and let BC defeat me (or LE, for the matter). IMO, it's gonna be bad enough having to endure the bad SEs I'll get within next 5 yrs of mixed HT (Arminidex, then Tamoxifen). (sigh)

    I was thinking, too... if they think I need rads (my former MO and RO the MO referred me to), then why doesn't EVERYBODY who's had a MX get rads after a MX??? (if the idea seems to be "well, we need to be sure to get it ALL out of you -- JUST IN CASE!!!) Sheesh... kinda reminds me of the old saying, "why cut off your nose to spite your face?" LOL! :O

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Musical, Here is the link to the NEJM, you need a subscription, so let me put in the highlights

    http://www.nejm.org/doi/full/10.1056/NEJMsb1202521

    The National Surgical Adjuvant Breast and Bowel Project (NSABP) B-06 trial3; in this trial, patients were required to have a negative margin of no ink on cancer cells to participate in the study... A meta-analysis of 21 retrospective studies examining the effect of various margin widths on local recurrence in 14,571 patients with breast cancer showed an odds ratio for local recurrence of 2.42 (P<0.001) with positive margins, but it did not identify a statistically significant difference in local recurrence rates associated with margin widths of more than 1 mm, more than 2 mm, or more than 5 mm after adjustment for the use of a radiation boost or endocrine therapy.12

    In summary, available data do not provide support for the view that wider cancer-free surgical margins (not just negative margins) reduce the risk of local recurrence after lumpectomy for invasive breast cancer. In contrast, the effect of biology and systemic therapy on local control of the cancer is now well documented. These data necessitate a shift in thinking regarding the relationship between the width of microscopic margins and the risk of local recurrence; this shift could have a major impact on clinical practice. Abandoning rules that surgical margins in all patients must be 2 mm, 5 mm, or some other arbitrary width has the potential to dramatically decrease the common practice of reexcision in patients with negative margins.10 Such a change will not only decrease health care costs but will also improve the cosmetic outcome of breast-conserving therapy, since the removal of a large amount of normal breast tissue has long been established as the major predictor of a poor cosmetic result.3

    We propose that a negative margin as used in the NSABP trials be adopted as the standard definition of an adequate margin and that subjective pathological descriptors such as “close,” which are interpreted by patients and physicians as evidence of an inadequate resection, be replaced with the measurement of the distance of the tumor cells from the inked specimen surface, without additional qualification or judgment. We also propose that routine requirements for margins that are wider than negative should be abandoned by surgeons, radiation oncologists, and tumor boards. The use of reexcision rates as a quality measure, which has the potential to promote unnecessarily wide resections (in addition to many other problems),34 should also be eliminated. We believe that the weight of evidence is sufficient to initiate these changes now.

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

    Thank you, Kira. I'm sorry, but to my non-clinical brain, could you kind of ("in laymen's terms") summarize what the NEJM report recommended?

    For what it's worth, here's some info from my final (post-BMX) path report w/regard to margins info:

    Tumor Size: (Size of Largest Invasive Carcinoma):

    Greatest dimension of largest focus of invasion: 1.5mm

    Tumor Focality: Single focus of invasive carcinoma

    Extent of tumor: Skin: not involved. Nipple: not involved. Chest wall: skeletal muscle is absent, not involved by invasive carcinoma.

    MARGINS:

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

     - DCIS: Positive for involvement at the deep margin and radial margin at 1 o'clock.

    And...

    Ductal Carcioma In Situ (DCIS): DCIS is present. Type: Solid and cribriform type; Nuclear Grade: 2; Necrosis: Focal, small amount.

    Again, apologies for my limited non-clinical brain to understand my DX here and how it relates to the article you kindly posted. Any simple to understand insight for me would be very helpful. Thank you!! Smile

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise ,

    The study said a tiny margin was fine, no need to call margins close as long as no cancer touched the inked margins.



    So, for your path report, your invasive component was tiny, 1.5 mm, and with widely negative margins, over 1 cm



    They report positive margins on your DCIS, both at the deep, where often they're on the chest wall and can't go deeper and on the radial margin, the edge at 1:00 if you " read" your breast like a clock face.



    So, the positive margins on the DCIS are likely why they want to do something. You do wonder why they couldn't just give a "boost" a small area of radiation, usually delivered to the tumor site vs the whole chest wall if its just two small areas of positive margins.

    also, reading that study, positive margins double the risk of recurrence in invasive cancer, DCIS is not invasive cancer.

    Let me know if this makes any sense.

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

    Thanks Kira... so, if DCIS is non-invasive, bottom line (IMO) is I don't understand why even RT would have been recommended to me in the first place by my previous MO... do you? I'll be sure to get more clarification from my new MO (I'll see 1st time tomorrow)... do you think - in your opinion - I can forego it? (to me, I think the risks and quality of life - incl financial loss - may far surpass any small % it may give me, do you agree?) My BS was surprised at my 1st MO's thinking for even having me referred to a RO: BS went to great lengths to illustrate why he (BS) thinks I do not need it (do I hear "overkill" here by my 1st MO and the RO - or even more $$$ for the cancer center??!!) Correct me in any area if I'm wrong, as I'm trying to comprehend the "why?" here.

    Thanks for your kind input & thoughts on this, greatly appreciated!! :)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise , I'm no expert, and when I worked for the rad onc's they did a lot of whole breast radiation for DCIS treated with lumpectomy.



    But post mastectomy radiation is different.



    I'd sure ask a lot of questions like what is the benefit for your unique situation, and talk to your breast surgeon.



    You know how when your a hammer, everything looks like a nail? I did see some older women who studies say can skip rads get radiation recommended when I worked there.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise, I did a pubmed search with the words DCIS, positive margins, mastectomy, radiation, and this popped up--from a radiation oncology journal, I'd discuss it with your doctors:

    http://www.ncbi.nlm.nih.gov/pubmed/23195778

    Int J Radiat Oncol Biol Phys. 2013 Mar 1;85(3):e129-34. doi: 10.1016/j.ijrobp.2012.10.020. Epub 2012 Nov 27.

    Outcomes in patients treated with mastectomy for ductal carcinoma in situ.


    Source

    Radiation Therapy Program, Vancouver and Victoria, British Columbia, Canada.

    Abstract

    PURPOSE:

    To examine, in a large, population-based cohort of women, the risk factors for recurrence after mastectomy for pure ductal carcinoma in situ (DCIS) and to identify which patients may benefit from postmastectomy radiation therapy.

    METHODS AND MATERIALS:

    Data were analyzed for 637 subjects with pure DCIS, diagnosed between January 1990 and December 1999, treated initially with mastectomy. Locoregional relapse (LRR), breast cancer-specific survival, and overall survival were described using the Kaplan-Meier method. Reported risk factors for LRR (age, margins, size, Van Nuys Prognostic Index, grade, necrosis, and histologic subtype) were analyzed by univariate (log-rank) and multivariate (Cox modeling) methods.

    RESULTS:

    Median follow-up was 12.0 years. Characteristics of the cohort were median age 55 years, 8.6% aged ≤ 40 years, 30.5% tumors >4 cm, 42.5% grade 3 histology, 37.7% multifocal disease, and 4.9% positive margins. At 10 years, LRR was 1.0%, breast cancer-specific survival was 98.0%, and overall survival was 90.3%. All recurrences (n=12) involved ipsilateral chest wall disease, with the majority being invasive disease (11 of 12). None of the 12 patients with recurrence died of breast cancer; all were successfully salvaged (median follow-up of 4.4 years). Ten-year LRR was higher with age ≤ 40 years (7.5% vs 1.5%; P=.003).

    CONCLUSION:

    Mastectomy provides excellent locoregional control for DCIS. Routine use of postmastectomy radiation therapy is not justified. Young age (≤40 years) predicts slightly higher LRR, but possibly owing to the small number of cases with multiple risk factors for relapse, a subgroup with a high risk of LRR (ie, approximately 15%) was not identified.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise, I know the 1.5 mm of IDC makes it not "pure" DCIS--and they excluded women like you with microinvasion, but here's a study of DCIS with positive margins that says radiation not called for, again, discuss this with your doctors:

    http://www.ncbi.nlm.nih.gov/pubmed/22975615

    Int J Radiat Oncol Biol Phys. 2013 Mar 15;85(4):948-52. doi: 10.1016/j.ijrobp.2012.07.2377. Epub 2012 Sep 11.

    Impact of margin status on local recurrence after mastectomy for ductal carcinoma in situ.


    Source

    Harvard Radiation Oncology Program, Boston, MA 02115, USA.

    Abstract

    PURPOSE:

    To examine the rate of local recurrence according to the margin status for patients with pure ductal carcinoma in situ (DCIS) treated by mastectomy.

    METHODS AND MATERIALS:

    One hundred forty-five consecutive women who underwent mastectomy with or without radiation therapy for DCIS from 1998 to 2005 were included in this retrospective analysis. Only patients with pure DCIS were eligible; patients with microinvasion were excluded. The primary endpoint was local recurrence, defined as recurrence on the chest wall; regional and distant recurrences were secondary endpoints. Outcomes were analyzed according to margin status (positive, close (≤2 mm), or negative), location of the closest margin (superficial, deep, or both), nuclear grade, necrosis, receptor status, type of mastectomy, and receipt of hormonal therapy.

    RESULTS:

    The primary cohort consisted of 142 patients who did not receive postmastectomy radiation therapy (PMRT). For those patients, the median follow-up time was 7.6 years (range, 0.6-13.0 years). Twenty-one patients (15%) had a positive margin, and 23 patients (16%) had a close (≤2 mm) margin. The deep margin was close in 14 patients and positive in 6 patients. The superficial margin was close in 13 patients and positive in 19 patients. One patient experienced an isolated invasive chest wall recurrence, and 1 patient had simultaneous chest wall, regional nodal, and distant metastases. The crude rates of chest wall recurrence were 2/142 (1.4%) for all patients, 1/21 (4.8%) for those with positive margins, 1/23 (4.3%) for those with close margins, and 0/98 for patients with negative margins. PMRT was given as part of the initial treatment to 3 patients, 1 of whom had an isolated chest wall recurrence.

    CONCLUSIONS:

    Mastectomy for pure DCIS resulted in a low rate of local or distant recurrences. Even with positive or close mastectomy margins, the rates of chest wall recurrences were so low that PMRT is likely not warranted.

    (PMRT=post mastectomy radiation)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    One more article about DCIS with microinvasion:

    http://www.ncbi.nlm.nih.gov/pubmed/19655603

    Am Surg. 2009 Jul;75(7):592-5; discussion 595-7.

    Recurrence after mastectomy for ductal carcinoma in situ.


    Source

    Surgical Oncology Service, Department of General Surgery, Wake Forest University, Winston-Salem, North Carolina 27157, USA.


    Abstract

    Mastectomy has long been a standard option for patients with ductal carcinoma in situ (DCIS). It is preferentially chosen by some women and may be suggested for individuals with recurrent, multifocal, or multicentric disease. We chose to evaluate our recent experience with mastectomy for DCIS. A retrospective review was conducted of 83 patients (87 breasts) from 1995 to 2006 who underwent mastectomy for DCIS. Mastectomy for DCIS was performed in 49 postmenopausal, 33 premenopausal, and one male patient. The average age was 53 years and the mean follow up was 4.5 years. Sentinel lymph node (SLN) biopsy was performed on 44 cases; positive nodes were identified in two. Intraoperative analyses of SLN were all negative. Only one patient had ipsilateral recurrence of the skin (1.1%). DCIS with microinvasion was noted in 32 per cent of the patients; none of these patients had ipsilateral recurrence. Three patients had positive microscopic margins; none have recurred to date. These results confirm the usefulness of mastectomy for patients with DCIS. We recommend SLN biopsy without intraoperative touch prep analysis. Additional treatment may not be required in patients with microinvasion, positive or close margins because our series shows no local recurrence in these patients.


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

    Kira, how can I thank you ENOUGH for this great information? I must say, I certainly gain SO much more (caps intended, here!) from these boards than I do at my 1x/month "BC support group" sponsored by my cancer center!! This info, you kindly posted for me (and others) seems to be "the best" positive and informative info I've found or read - to date - to "add fuel to my 'do-not-RT-me' fire"!! Smile

    Suffice it to say that all I can do is ask my new MO a LOT of questions, incl the "what is the std. of care" question, and armed with my research - and your findings - I'm sure I'll have some input to reply to here on this board tomorrow evening! :) THANK YOU!!!!

    BTW, I also just LOVE (ok, adore!) dogs, and I love your pix of the German Shepherd under your name! Is that your dog? What a beauty! I have a 12 or 13 yr old female Golden... who has been with me to some of my appts and such... and instinctively is always by my side. Even though I have no (human) children, she IS my baby just the same... and when I get stressed she'll come right to my feet, under my PC table... and I can't help thinking of Martina McBride's song, "I'm Gonna Love You Through It" when she does that! Yes, animals are smart creatures... and I think even some are smarter than some med folks I've met (as I'm sure we all have in our lives) LOL :O

    Thanks again... I'll keep you posted! ;)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise , the avatar is my beloved German shepherd/Australian shepherd mix. Acccording to the rescue her mom was a puppy mill shepherd who produced a litter of mixed breed pups they didn't want. I did see her brother and he looked like a Merle Aussie.



    She's almost 9 now, and a total love, although a bit timid.



    We have a family of foxes raising their 3 kits in our neighbors yard, and one gorgeous baby stuck his or her head through the fence to try and play! She's fascinated with these wild intruders. But we need to make sure there are none in the yard when she goes out.



    Please let us know how it turns out, and your Golden sounds wonderful.

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

    Kira thanyou so much for your input and supplying this info. Really interesting.

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

    Thanks, Kira and Musical! DH and I discovered the other day a family of (at least 4) young bunnies in our backyard. DH works 3 jobs to keep us afloat (bless him!), and, in a hurry the other day, went out to cut our high-growing grass in the back. Unbeknownst to him, he came "this" close to running over a bunny - but THANK GOD! - the grass was so tall, and the blade on our walk-behind power mower was high, also. Happy that that one little bunny was soo deep under that tall grass! Yikes! And we had to carefully (still do) watch over our Golden when we let her outside, so she won't try to "play" with the small bunnies (with disastrous consequencies, which happened in previous "bunny families" that love our yard with no kids!) That was one lucky bunny (phew!!) Kira, your dog is beautiful; we got our Golden in 2002 when a friend found her on a busy road, without any ID, etc. No one claimed her, so we adopted (and spoil) her! When we found her she had very recently (she had extended nipples - something I wish I had! LOL) given birth to a litter... we'll never know if she was somehow "put out" by a puppy mill owner after her litter... or she got lost... but boy, has she found a home with us! :):):) I just LOVE dogs!! :)

    Lastly, I did some searching, and found something via Google that caught my eye, from the renowed MD Anderson Cancer Center in Houston (wish I live there!!), which you all may find interesting! ;) ---> http://www.mdanderson.org/newsroom/news-releases/2010/most-early-stage-breast-cancer-patients-may-not-need-radiation-after-mastectomy.html

    I'll keep you posted (fingers crossed!) after meeting my new MO tomorrow....

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise , very interesting article. And interesting how clinical practice evolves.

    What a touching story about you adopting your Golden. She sure found a loving home.

    Hope the meeting with the MO goes well and you feel comfortable with the decision making process.

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

    OK - here I am, circling round back to you kind friends!

    Met with my new MO 2 days ago. Glad I made the switch! Even though my BS didn't think I needed rads, the MO went far beyond the descriptive of what "positive margins" (in my case) means. And I liked that! Hard as it was to decide, after his illustrations (per my pathology reports), I made the gut-wrenching decision to have the six weeks of rads. <Sigh!> But, DH was with me, and we pretty much feel that, if I have this ONE opportunity to kick BC in the a** over and above what went out of me with my BMX, then "DO it - TO it!" I tell you, as you've seen from my posts, this was NOT an easy decision to make... but I know I'd never be able to live with myself if BC would recur locally, and knowing I had a weapon (now) to use to ensure a better chance of non-recurrance and turned it down... would really take the wind out of my sails... which is what I do not want to do. MO will put me on Tamoxifen for 5 yrs post-RT, is perfectly agreeable with me not doing chemo - said he'd have to order the Oncotype score (to me, that's $ overkill for Stage 1A) to see IF the test would deem I need it, but how could that even be "valid" said the MO, since the pathologist somehow, somewhat, no one knows why, never had my DCIS/IDC removed tested for HER-2 or other. I guess it's too late, anyway. MO could not give me any stats/#s for risk/survival, stating "numbers are numbers, they change, and the main thing is to REMOVE ALL the BC as much as we can NOW." I walked out of there pretty scared, when the RN said, "you do NOT want to have a recurrance; I've seen it, it's NOT pretty, not always a LOCAL recurrance... can go to your bones, lungs, liver..." I heard and understood enough. But I would not budge on the chemo issue.

    Have an appt to meet with the RO (he's a GREAT Dr! Loved him!) May 30, and then to have my 1st initial RT "set up" - but I will try my best to ask if: 1) I can contunue to swim (we've got a pool in our yard, that I keep as clean as Moet Champagne! LOL :O) through the summer and treatments (as best I can), it's bromine, not chlorine sanitized, much more gentler on the skin, and I keep the pH and alkalinity levels above par & check 3x/week in the summer; and 2) To PLZ avoid lymph node radiation (really paranoid of getting LE, especially since I have no BC in the nodes). I came armed to my appt with the MO with lots of RT-related questions (that only my RO can answer) and concerns (LE, heart disease, etc.) I did hear my MO state that, yes, RT would affect my lungs somewhat... HUH?? :(  Something I'll definitely run by my RO.

    Stay tuned... I guess I'm not surprised, but then, I have to put my faith in my new MO and treatments and directives given. When I saw the illustration of my IDC and what "positive margins" were in my case, I guess I'm gonna have to cut that out, frame it, and review it each and every time (and after!) I have my RTs done! ;)

    I'll keep you all posted... my fingers are crossed for hopefully landing a late-in-day-as-possible before 5pm, so I can cut out of my terrible job EARLY for the RTs! :)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise, It sounds like you got the information you needed to make a decision you felt comfortable with--I'm so glad.

    I worked for a radiation oncologist for 3 years, and I have two concerns about swimming 1) skin irritation--it is wonderful that you have your own pool (as the CDC found fecal contamination in >50% of public pools), but the skin does get irritated as radiation goes on, and you don't want to worsen it, and 2) LE risk: there's early risk and late risk--early risk is overwhelming a "quadrant"--the arm/chest/back with too much lymph flow when it's already inflammed and late risk is due to fibrosis. The rad onc I worked for tended to restrict the patients from exercising the area we were treating, but allowed general exercise. But pool exercise is great, so ask your rad onc.

    When I worked for the rad onc, when they did chest wall/after mx radiation, they used a "bolus" to stop the radiation at a more superficial level, and it caused more skin irritation--because they wanted to deliver the radiation to an area just below the skin. It was like a wax blanket.

    I personally used vanicream during rads, to great effect. I worked with one rad onc who ordered special calendula lotion that also worked really well.

    Sunblock is very important.

    So glad you have a new MO and can move forward and kick bc in the butt.

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

    Thanks for your helpful info, Kira! :) It's been a busy week....

    Met with my RO today (was to get measured for the rads, etc.). He examined to see that my 4 JP drain scars (right on my bra line, darn!) a few are still healing (due to my walking w/bra, sweaty conditions not helping!). Lucky for me, and with my own scenario (positive margins near chest wall), he happened to say that the hospital's TOP BS (she's a lady, and a GREAT one!) was visiting the cancer center, and he pulled her in to do a quick examine of me. A big concern pre-rads, they said, is if I DO (or not) want recon. I am now adamant at NOT having it done - ever - and happy with that. Of concern, is large "dog ears" (painful when light jogging, and worse during late in the day), and how I can examine myself going fwd, with all the xtra skin BS #1 left behind (in case I did want recon in the future). BS I saw today suggested doing surgery on me (sigh, again, and with JP drains, but not as long, and no SLNB), with a "no-pool-for-2-weeks-only" guideline. BS today NOT certain if BS #1 did - or didn't - get to or remove fascia to chest wall. HER take today was to do surgery, get path report and then - and only then - could we know for sure if I need to have rads - or not.

    I've been thru a lot w/BMX, but DH agrees with me, let's get a FINAL answer, by THE top BS of the hospital (and director of entire BC center). RO also said (from $ perspective) that rads MUCH more $$$$ vs. surgery, and "maybe we won't HAVE to give you rads, wouldn't that be nice?" I couldn't agee more (esp. w/my MI history, IDC on my L breast, lymphodema and fibosis risk, etc. - not to mention lots of gas and PTO fom work I'd need. Yes, I don't look fwd to having maybe 2-3 more weeks off work for (final) surgery & recovery, but.... it may pay off in the end.

    Of course, BS #2 will need to run this thru my (good) health insurance for approval; told her to code it (jogging a problem) in such a way as to ensure it's a med - vs. cosmetic - issue at stake. She took some digital pix of me (not my face LOL :O) for ins approval. Of all this, I regret not going to BS #2 in the first place, but like my RO said, let's keep looking forward (I told RO if we both weren't married, I'd snag him - my DH laughed at that one!).

    So, the saga continues... I'll call BS #2 tomorrow to see if ins OK'd me to proceed. How true that BC is different for us, and each case IS so different! Never thought I'd need 2 surgeries for this... small consolation is that I emailed Lillie Shockney (Dir of Johns Hopkins BC RN team?) and she surprisingly replied, stating EXACTLY what BS #2 told me today. :) Guess I'm in good hands?

    Thx for your input, Kira! BTW, we got our Golden girl shaved down a bit for swimming season... she took her first dip in the water today, 1st one "in"! :) Found 2 ticks on her, so we got some Frontline for her (groomer said ticks problem HUGE in our area this year!!). Her fu was sooo thick, so now detection will be easier, TG! :)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Turquoise, re-excision to get clear margins is a definite medical indication.

    We've had our issues with Lillie--as she never got LE, so she kind of denies its existence. But she is out there as an advocate for women with breast cancer.

    Sounds like you have a great new team.

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