Chest Wall Margin 0.1mm after Mastectomy - radiation decision

dancetrancer

Mom3, thanks for that info - I thought that might be the case - very good to hear that confirmed by someone who has the same dx and has been through this!

Undercoverbel - yes, my head was spinning too by the end of yesterday's cram session - but I'm feeling a bit better reading back over it now.  I've always been someone who needs to know everything in detail before I make a big decision.  I know it's bordering on OCD, but I can't seem to operate any other way, LOL!  

I found two more short summary editorial-type articles that were really good at putting it all together, which others may find helpful.  

Radiation-Induced Heart Disease: Vigilance Is Still Required  (2005, Journal of Clinical Oncology)

Local Recurrence or Cardiovascular Disease: Pay Now or Later  (2007, Journal of the National Cancer Institute)

ZTeam

Dance, thanks so much for all your research. I'm going to bring these articles with me to my appointments this week.

I found the article "Radiation-Induced Heart Disease..." the most concerning, particularly these paragraphs:

"To understand the pathophysiology of radiation-induced heart disease, we and others have examined the surrogate end points of radiologic changes in myocardial perfusion, wall motion, or ejection fraction (EF) after RT. In 1998, we began enrolling patients with left-sided breast cancer onto a prospective study to determine the potential cardiotoxic effects of RT using modern techniques. Patients had modern treatment planning based on computed tomography and pre-RT and serial post-RT single-photon emission computed tomography–gated cardiac myocardial perfusion scans to assess for changes in heart function. New perfusion defects occurred in 50% to 63% of women 6 to 24 months after RT.^10,11 The incidence of perfusion defects was strongly correlated with the volume of left ventricle (LV) in the RT field, occurring in 25% of patients with 1% to 5% of the LV within the tangent fields, and in 55% of patients with more than 5% of the LV within the field. These perfusion defects generally persist at least 3 to 5 years after RT.¹²

The clinical significance of these perfusion defects is unknown. However, they appear to be associated with abnormalities in wall motion, declines in EF, and episodes of chest pain (likely pericarditis).^13,14 The data from our study and others are summarized in the Table 1. Changes in EF have been apparent only in patients with relatively large fractions of the LV affected by perfusion defects.^13,20

Thus, these data suggest that RT-induced cardiac injury may still occur with modern techniques. Furthermore, these cardiac abnormalities can be seen in patients with extremely small fractions (eg, 5%) of their LV included within the RT fields. Five percent of the LV corresponds to approximately 2% to 3% of the heart; a small fraction that is often difficult to discern on traditional dose volume histograms, which would generally be considered “safe” by most radiation oncologists. On the basis of these results, we frequently use a heart block to markedly reduce, and sometimes eliminate, incidental cardiac irradiation in our patients. In patients in whom such a block may result in inadequate coverage of tissues at high risk of harboring microscopic disease, compromises are made, or alternative techniques such as electron-patches or respiratory gating are considered."

Yikes.  

I heard back from another one of my contacts (with oncologist colleagues) and, apparently, they recommend getting radiation. She said that she'll send me more info tonight.

Current Score:

Doctors recommending radiation: 2

Doctors not recommending radiation: 1 

I had been leaning heavily towards not getting radiation because I'm scared about possible heart complications and I thought I'd rather 'save' radiation for a recurrence, if I needed it. The article Dancetrancer found about inadequate primary treatment resulting in lower survival rates was an eyeopener. However, that study was for Stage 2 and 3 BC patients. While I agree that we can learn from these studies on patients with different diagnoses, particularly the rads side effects, I'm not sure how well the recurrence and survival rates translate to a DCIS diagnosis. I'll talk about it with my MO and RO this week.

Best,

Lisa 

Natters

What I want to know is - what does it mean? What are the consequences of a perfusion defect? That's clearly not a heart attack, but may put you at slightly higher risk of heart attack or stroke? This is something I plan to discuss with my GP, who is an internal medicine specialist. I went from probably being her healthiest patient ever to now, worrying about all kinds of stuff!

dancetrancer

ZTeam -  That section you copied and posted made me go "yikes" as well.  It was hard to read about such an apparently high degree of heart damage being done still with the newer treatments.  I wonder how the heart block they are talking about works.  One encouraging thing is they suggest respiratory gating be considered when a heart block can't be used.   So it sounds like that option still offers more cardiac protection, as noted in the prior study that I shared.    I will also be discussing this with my RO's this week!  And you are very correct about not drawing conclusions from that article about prognosis with tx due to those pts being later stage.  

Natters - sorry - I know, the information is scary, isn't it?  A perfusion defect would mean there is less blood flow getting to that area of the heart (they are talking about the LV - left ventricle).  Notice they say this appeared to be related to a decline in EF - ejection fraction - that is the % of volume of blood that the LV is able to pump.  When this happens, the heart has to work harder to move the same amount of blood through the body.  Over time, I believe that would increase the risk of a heart attack. I suspect b/c this damage takes time to take its toll on the heart is why the studies have shown it takes 10 to 20 years for the cardiac SE's to show up clinically. 

undercoverebel

I think the risk of lung cancer can be just as bad as heart damage. I've read that lung cancer is the deadliest cancer in women. The RO did warn me about that as a possible SE,the only one he did mention. I think i'd rather deal with a bc recur than a heart that could kill me or face a battle with lung cancer. The huge problem is they don't have much to show how many women get lung cancer afterward,or who die of it or heart issues. The last RO made it seem as if no news was encouraging news. To him a lack studies seemed to say they weren't needed because the se's aren't that common. At the same time he couldn't deny they were noticing these symptoms in women after rads. As a result they had to consider that the rads caused all of these problems. Knowing the recur risk to stage 0 women,particularly with close margins and with/without rads would help greatly. They just infuriate me to no end with their "Let's ignore them because they barely have anything." approach. My goal is to research until I find the stats to clear up all of this confusion. Good luck to me.

ZTeam

I heard back from my contact, an RO in Tucson. Based on my pathology, he recommends doing radiation. He said that although theoretically DCIS should not go through the fascia he has seen cases of recurrent disease of the chest wall(over a long career). He would recommend having radiation because the benefit outweigh the risks(possible skin redness and fatigue from the radiation).

I found it interesting that he didn't mention anything about the longer term risks to the heart and lungs, which I'm more concerned about than the short-term skin and fatigue side effects. I'm also concerned about the slightly increased risk of LE. This doesn't really make it any easier. 

dancetrancer

Interesting ZTeam, that he didn't discuss the long term heart and lung risk.  Of course those are my main concerns as well.  I can heal from skin damage and even deal with assymetry that might occur from shrinkage, but dying from heart/lung issues is a whole other matter.  Any chance you can ask him his opinion on the the long term risk of rads?

I'm wondering how the heck it is recurring on the chest wall if it is not invasive and the fascia is removed.  It must be that some of the breast tissue remains in areas of the chest wall where there isn't any fascia to begin with.  Otherwise, it makes no sense.  

Now you've got 3 recommending for, one against.  Are you leaning any particular direction on your decision yet? 

I'm working on summarizing my list of questions for my RO's.  Ooh fun.  

ZTeam

Hi Dance,

It's still just 2 recommending for and one against. My previous post today was just the details on why he recommended radiation. I'm going to try to get more info on the heart and lung risk this afternoon.

I don't get how it can recur on the chest wall either, if it's non-invasive and the fascia was removed. My BS said she has seen it recur there though. I also had Paget's cancer of the nipple and my BS said that typically Paget's is very mobile, so I'm wondering if maybe radiation wouldn't be such a bad idea. I was leaning heavily towards not doing radiation, now I think I'm firmly planted on the fence. I hate this!

Would you mind sharing your questions for your ROs? I'm seeing my MO tomorrow afternoon and will be putting together my own list as well.

dancetrancer

Ah, I understand now Zteam! 

Hmmmm...your point about Paget's is a good one.  

I am leaning towards rads still, but definitely NOT off the fence yet!!!

Sure, I'll post my questions soon - still working on the list...hope I have enough time to get all of these questions answered.  My RO is gonna really detest me and maybe change her recommendation for rads by the time I am done asking questions, just to get rid of me.  LOL! 

It would be great if you'd share your list of Q's as well!  

Natters

I had a whole list of questions for my RO after he finished his examination and gave me his spiel, but  he just gave me brief, mostly one word answers for all of them. Mostly the answers were "no" as in: no real risk of longterm damage to your heart and lungs. I think he felt the benefit (which to me were substantial -cutting my risk of recurrence from 20% to 10%) outweighed the risks. I was going to get a second opinion because his dismissiveness drove me nuts, but then I found out he was the best breast RO at this particular hospital, and I didn't want to have a long commute for something I needed to do every single day. I will say that the short-term risks were not too bad for me. Not terrible, not great, just OK and do-able. Definitely worth reducing my risk that much. This is my very last week and my skin didn't break down until my 25th treatment day. Luckily, where my skin is raw is OUTSIDE the boost area, so it is no longer receiving radiation this week, and it will hopefully start healing soon. Of course, it'll be interesting to get back in touch in 20-30 years, to see how the ole heart and lungs are holding up, eh?

dancetrancer

Yep Natters, I may very well get the ole' brief answer response, too, LOL.  The good thing in your case is that you had a quantifiable recurrence risk spelled out to you - and that makes the decision to take on those rads risks much easier.  I would have made that same decision, I believe, if I knew my risk was a solid 20% without it.  Thank you for sharing your experience with rads - it is helpful to hear!  And BIG congrats on being done this week - wahoo!  

OK, so here are my questions, with little notes to myself interspersed.  I doubt I will end up asking all of these, since I always get flustered and feel pressured by docs to hurry up...but I'm gonna try!  DH is coming to my appts with me, and we will record the appts. 

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My need for rads???
1) How does it recur if the fascia is removed, and DCIS cannot cross the fascia?
2) What is my estimated % recurrence risk, over what time period? What is an acceptable recurrence risk to live with, over what time period? (typical recurrence risk for lumpectomy with rads is 12%, according to the 2009 NIH Consensus Guidelines: http://consensus.nih.gov/2009/DCIS images/dcis_finalstmt.pdf)

3)If you can't give me a recurrence risk estimate, can I see the MO? 

4) I understand that the new Oncotype test was developed for lumpectomy patients. However, since it is a genetic test, the results of it should identify how aggressive my DCIS is, irrespective of whether I had a mastectomy or lumpectomy. From the press release: "The DCIS score also demonstrated consistent association with local recurrence across subgroups regardless of lesion size, grade, surgical margins, or menopausal status." Since the research done on recurrence postMX for DCIS is limited, why not use this new test to obtain more information? Not all patients with my margin status, grade, comedo, and age recur. Those factors suggest higher recurrence risk - but are not completely predictive. If you are asking me to take on the risks of rads, I need to know that it is for a good reason...I need as much info as possible to help determine that my risk is, indeed, high.
4) What is the grade of the focal DCIS found on the R side? Since it is close to the skin, can I monitor it by palpation? 3rd opinion felt it was ADH.
5) Yes I have the factors of young age, comedo, multicentric, small margins. But my DCIS on the L is Gr 2, not 3. Have you considered that fact in estimating my recurrence risk?
6) Is it possible to take my case to the tumor board to get more input?

Benefit of rads
1) By what % do you feel rads will % my recurrence risk?

Side effects of rads
1) What is my % risk of delayed heart damage in 10 to 20 years from now?  Recent studies still show decreased perfusion, even with newer rads techniques. Persistence of RT-induced cardiac perfusion defects 3-5 yrs post RT (2004 ASCO Annual Meetings Proceedings, Journal of Clinical Oncology: http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=26&abstractID=1623)
2) I have MVP, and 3 immediate family members died of MI, including my sister at age 46. Should this family and personal history be considered when evaluating rads risk for me personally?
3) Since you are recommending bilateral rads, how much increased risk of SE does this present, due to scatter-effect to the other side? Won't heart receive even more radiation?
4) Since this is post-MX, there is decreased breast tissue, and my heart appears to be very close to the chest wall, does this not make it riskier in my case?
5) Lung cancer? LE?
6) Fat grafted breast - do you need to consult with my PS at all since this has not seen here? How might this change tx plan, if any?
7) At what point can you say the benefit of cancer recurrence risk reduction outweighs the new risks you create from radiation? Pay me now or pay me later?

Knowing all of these side effects, combined with the "unknown" real recurrence risk, would you recommend rads for yourself or a family member in the same situation?

If I don't do rads...
1) How would I be monitored for recurrence? Do I really need more mammo's? And if I recur, how will it be treated? Prognosis/mortality rates? Do I need to see MO? From: http://consensus.nih.gov/2009/dcisabstracts.htm The Impact of Surgery on Ductal Carcinoma in Situ Outcomes: The Use of Mastectomy
Eun-Sil (Shelley) Hwang, M.D., M.P.H.
No large studies of local recurrences after mastectomy for DCIS have been performed. A small review of 10 chest-wall recurrences in this setting have suggested that young age and multifocality are associated with increased risk of locoregional failure.10 One recent study reported on a series of 80 patients who had undergone mastectomy for DCIS and had margins of <10 mm11. At a median follow-up of 61 months, 6 patients (7.5%) had a local recurrence. In this study, recurrences were associated with high grade and margins of <=2 mm. Young age (defined as <60 years) was again identified as a risk factor for recurrence. However, even in "high risk" patients, postmastectomy radiation for DCIS is uncommon. Treatment for isolated locoregional recurrence is effective, and the majority of patients treated with local excision and radiation remain disease-free at long-term follow-up.10 (Kim JH, Tavassoli F, Haffty BG. Chest wall relapse after mastectomy for ductal carcinoma in situ: a report of 10 cases with a review of the literature. Cancer J. 2006;12:92-101.)

If I do rads...
1) And I recur, how will it be treated, if rads has already been done?

Details of how rads will be done
1) how much radiation (dosage) and how many treatments? Any boosts required?
2) What type of rads? Resp-gated, etc.
3) What areas of the breast are covered? Want to avoid axillary and clavicular node areas. Also have heard IMN are riskier for the heart - can those be avoided?
4) Since my pec muscle is pushed forward by the fat graft, and thus the posterior margin is pushed anteriorly, can we do the rads more superficially and decrease exposure of lungs and heart?
5) When is the latest I can start in January? (need healing time from fat grafting Dec 23rd)

ZTeam

Dance, this is so helpful, thanks! I don't know that I have many more questions, but I will post any additional later today.

 

Best,

Lisa 

ZTeam

Ok, here are my questions for my RO and MO. Many many thanks to Dancetrancer for posting her questions first as I incorporated a lot of them:) If anyone else has questions they think would be useful, please post and I'll ask my oncs.

A. Risk of Recurrence:
1. What is my risk of recurrence without any adjuvant treatment and over what time period? Does the fact that I had Paget's increase my risk?
2. Summary of ROR for pure DCIS with MX, no adjuvant treatment:
a. 5/80 (16%) for margins <2 mm, median follow up 5 years (2008, Rashtian et. al)
a. 2/19 (10.5%) for margins <1 mm, median follow up 6.9 years (2007, Carlson et. al)
b. 11/246 (9.6%???, 9 invasive) over 12 years when VNPI >9, average follow up 6.9 years (2010, Kelley et. al)
c. 1/30 (3.3%) for high grade and close margins, median follow up 8 years (2011, Chan et. al)
3. If the fascia is removed and pure DCIS cannot cross the fascia, how can there be a recurrence on the chest wall?
4. At what threshold for risk of recurrence is adjuvant treatment recommended?
a. Note: typical recurrence risk for lumpectomy with rads is 12%, according to the 2009 NIH Consensus Guidelines: http://consensus.nih.gov/2009/DCIS images/dcis_finalstmt.pdf)
5. New Oncotype test for lumpectomy patients
a. Genetic test: results should identify how aggressive my DCIS is, irrespective of whether I had a mastectomy or lumpectomy
b. From the press release: "The DCIS score also demonstrated consistent association with local recurrence across subgroups regardless of lesion size, grade, surgical margins, or menopausal status." Since the research done on recurrence post-MX for DCIS is limited, why not use this new test to obtain more information? Not all patients with my margin status, grade, comedo, and age recur. Those factors suggest higher recurrence risk - but are not completely predictive.
6. How do I monitor for recurrence?
7. Where would the recurrence occur (i.e., on the scar, under the skin, on the pectoralis muscle)?
8. Is there any imaging that will help detect a recurrence?

B. Radiation:
9. What would be my risk of recurrence if I proceed with radiation and over what time period?
10. What are all the potential short-term side effects of radiation, including the probability associated with each?
11. What are all the potential long-term side effects of radiation, including the probability associated with each? (Heart defects, lung cancer, lymphedema)
a. Note: Recent studies still show decreased cardiac perfusion, even with newer radiation techniques. "Persistence of RT-induced cardiac perfusion defects 3-5 yrs post RT" (2004 ASCO Annual Meetings Proceedings, Journal of Clinical Oncology: http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=26&abstractID=1623) 

12. Since this is post-MX, there is decreased breast tissue, and my heart appears to be very close to the chest wall, does this not make it riskier in my case? 

13. If I do radiation and have a recurrence:
a. How will it be treated?
b. What is the prognosis/mortality rates?
14. If I don't do radiation and have a recurrence:
a. How will it be treated?
b. What is the prognosis/mortality rates?
15. Typically, is radiation as effective with treatment for a recurrence as it is for the initial treatment?
16. Is there any benefit to ‘saving' radiation for a recurrence, if necessary?
17. At what point can you say the benefit of cancer recurrence risk reduction outweighs the new risks you create from radiation?
18. Knowing all of these side effects, combined with the "unknown" real recurrence risk, would you recommend rads for yourself or a family member in the same situation?
Details of how radiations will be done
19. How much radiation (dosage) and how many treatments?
20. Any boosts required?

21. What will be done to reduce the risk to my heart and lungs?

22. What areas of the breast are covered? Internal mammary nodes? Clavicle? Axillary? Does this increase my risks of side effects? Are these areas necessary?



C. Other Treatments:
23. 90% ER+
a. How much would Tamoxifen reduce my risk of recurrence?
b. What are the side effects and probabilities of taking Tamoxifen?
c. Should I look at more drastic measures to reduce my estrogen levels?
24. Metformin
a. I understand that clinical trials are underway looking at Metformin and risk of breast cancer recurrence. Are you aware of any early findings of the Canadian or American trials?
b. As I have polycystic ovarian syndrome, is Metformin something that might be useful for me?
c. What are the side effects and associated probabilities of taking Metformin?
25. Tumour markers
a. Are there any tumour markers that can be measured to check for recurrence?
26. Biomarkers - can these be checked? What if I pay?
a. Stromal Caveolin-1
i. 97% of ER+ DCIS patients (35/36) with high levels of stromal Cav-1 (score = 2) did not show any invasive recurrence. (2009, Agnieszka et. al) Note: wide excision only, no radiation
b. p16, COX-2, Ki67
i. 8 year risk of subsequent invasive cancer was statistically significantly higher for women with initial DCIS lesions that were detected by palpation or that were p16, COX-2, Ki67 triple positive (19.6%, 95% CI) than for women with initial lesions that were detected by mammography and were triple negative. (2010, Kerlikowske et. al) Note: tx was lumpectomy alone.

D. Reconstruction:
27. I am considering having reconstruction. The technique I would like to use is microfat grafting with the Brava Breast Enhancement & Shaping System.
a. Are you familiar with this technique?
b. From the Miami Breast Center website:
i. Not only does Brava expand the skin from the outside, it also has the effect of regenerating an edema like breast mound through the expansion of tissues and nerves. Brava also increases the blood flow to the mastectomy scar and improves the radiation effect. This does two important things, which are unique to this technique:
a. It creates an adequate vascular matrix into which the liposuctioned fat is later injected.
ii. It allows the patient to keep almost normal sensation in her breasts and nipple
iii. Micro fat grafting: fat is removed from one area of the body and meticulously injected back as hundreds of tiny individual droplets at the breast site that has been enlarged by the Brava expansion
c. I understand that these techniques have not been practiced long enough for any studies. However, theoretically, do you anticipate any increase in my risk of recurrence if I were to proceed with this technique and the Brava?
d. Will having reconstructed breasts make it more difficult to detect a recurrence?
e. Could a recurrence occur on the pectoralis muscle, underneath the grafted fat? How could we monitor for this type of recurrence?

dancetrancer

Great questions...I forgot to list those recurrence % with the studies to my page...thank you for the reminder!   

I also like the biomarker question...I asked my 3rd RO if we could look at those, too - waiting to find out.  I know my RO tomorrow would say no since she said no to the Oncotype test.  Not even worth asking.

Good luck tomorrow - we both have a big day!  

dancetrancer

P.S.  I added another question - asking if I do rads, will I be allowed to take antioxidants/supplements to minimize normal tissue damage.  

rk85

You ladies are really an inspiration.  I hope all doctors come to expect and welcome these type of questions from their patients.  I had the unfortunate experience of seeing an MO who was so perterbed by my questions she said, I can't answer your 'what-if' questions.  You're having a mastectomy for DCIS - there's really nothing more to discuss!  I was shocked.  She was not a breast specialist so I don't think she knew the answers to the questions I was asking so instead of saying, I don't know, I'll find out,  she just dismissed me like I was crazy.

I especially like the question about taking antioxidants to minimize collateral damage to normal tissue.  There are some supplements that minimize damage to cardiac muscle during chemo, for example, so if you find there is an otherwise safe vitamin/supplement that may offer the same benefit for rads, why not take it?!

Natters

We have a nutritionist where I get rads, and when I asked her about anti-oxidant supplements or drinks, she said no. She said try to get everything you need from a healthy diet. My MO is willing to talk numbers and "what ifs" with me, but my RO is always in a big hurry and very dismissive. But I only have 3 more tx left, yay

dancetrancer

Thanks rk...and Natters...would you believe I forgot to ask the supplement question?  Well, not forgot, but of course, ran out of time.  I was able to get a good 45 minutes with the RO, and she was very, very nice and accommodating, but the conversation took so many twists and turns in that time that I didn't get to cover everything.  

Let me summarize by saying I don't feel any closer to making a decision.   I am anxious to see what my appt's tomorrow bring, as those should hopefully present a more unbiased opinion.

The reason I say unbiased is b/c I started my care locally here, had my mx and immediate recon surgery in FL due to the reconstruction being specialized and not available here, and now that I am back home it appears my local docs are uneasy with following someone else's surgery and pathology preparation.  I had asked them prior to going to FL if this was going to be an issue, and they said no.  Well, it is.  Amongst other factors, my RO said today that there are too many "unknowns" in my case.   She said they would not have done an areola sparing surgery on the L side due to how close the cancer was (mind you, it was removed by my local surgeon, and no cancer was actually found).  So, she questions how much breast tissue was left behind overall.  They don't believe in NSM's either, and this was done on my R side (which we thought was prophylactic, still might have been...disagreement if it is ADH or DCIS).  When I told her the local surgeon here acknowledged the pec muscle was right at the surface when she cut in to remove the areola, she replied, "granted, I'm hearing more things that are starting to make me feel more comfortable with this."  Note that I have fat grafted in underneath the pec muscle which pushes it forward, plus fat injected into the pec muscle itself - so it looks like I have a small breast...but it is all grafted fat.  

She also said the pathologist here told her that only the posterior side was inked, so that means I could have close margins anteriorly as well, and we don't know in how many places.  When I reminded her that their own pathology review said I had a close anterior margin on the R, so that meant it must have been marked, she back-tracked and said she was just going by what the pathologist had told her "so maybe they did mark it".  

Aside from these "many unknowns" her reasons for recommending rads is b/c of my young age (with cancer being more aggressive the younger you are), the fact that it was multicentric, and that I had close margins.  When I asked her if the risk should be a bit lower b/c I am Gr 2, not Gr 3, she replied "yeah, but it was all over the place" (meaning widespread/multicentric).  

When I pressed her for a recurrence estimate, she threw out the number 15%.  I asked her since 12% is considered "acceptable" for post-lump with rads, why is 15% so much worse for me?  She replied "Well it may be much higher, that's just a guesstimate.  No one really knows".

Side Effects of Rads:
Regarding the heart - they scan the heart in simulation and will do respiratory gated to see how much radiation will hit my heart with that.   If still hitting it too much, will add some kind of heart block to protect it further. "But regardless...the heart will still will get some scatter."   (I really appreciated her honesty and not sugar-coating it.)  When asked how she can know what that means long-term, she answered "I don't really know the answer to that actually b/c newer data isn't on resp-gated and heart block techniques, it is more on shallow tangent techniques, which still include part of the heart in the field."  She acknowledged that a small sliver of lungs will get radiated and scarring from that will be seen on x-ray, but typically does not cause symptoms, unless you get radiation pneumonitis from it.   (still scary!)

Other considerations:  

If decide not to do rads, she would at least recommend tamoxifen, and even if do rads, she said I still might want to consider adding tamoxifen to it.  I asked her if I needed to see an MO, and she acknowledged most RO's don't prescribe Tamox, but she does it all the time, b/c she has been doing breast cancer for so long.    She said she was more than willing to schedule me to speak with the oncologist, however.  I thought this was interesting.  I now have something else to ponder. I was told that tamox is not indicated with a BMX, and she said yes, that is true, but it may be something to consider in my case. 

She also highly recommended that I get another opinion from 2 well-known RO's (fly to PA or to TX), to make me feel more at peace with my decision. Said she'd be more than willing to help me set it up.  She wants me to be comfortable with my decision.  "I don't necessarily want to treat you. I don't want you to have problems, but I don't want you to have cancer come back either."  (I didn't mention I was already getting another opinion tomorrow - it was near the end of the meeting, and she was standing up and getting ready to go.)

In general, she was very kind, and I can tell she really cares about what happens to me.  However, she is very conservative, and I'm afraid they are overreacting to me having surgery somewhere else and having an unusual type of reconstruction.  I'm not sure what to think.  

The other big frustration I have: she and my local BS feel my follow-up needs to be close: mammo's every 6 months, MRI every year.  I know that this stems from them suspecting too much breast tissue was left during my BMX, and b/c they have never seen my kind of reconstruction before.  I'm afraid this is going to lead to lots of extra tests, radiation, biopsies in the future.  Not sure what I am going to do. 

I firmly trust my breast surgeon in FL.  He said in his 16 years of his breast only surgical practice, he has never had a recurrence happen after an MX for DCIS only.  He does not recommend radiation.

I hope tomorrow's appt gives me more clarity - and here's the best news I got all day...they were able to squeeze me in with an MO tomorrow, too.  Woo-hoo!!!   

Springtime

Mom3, I had no nodal involvement (3 out, all clear) and they blasted my armpit and clavacle anyway with RADs. I would say beware of this. I wish I had known more at the time...

mom3band1g

Springtime - hope I didn't offend..... so sorry you had trouble with rads.  It all just stinks.

dancetrance - I would def meet with a medical onc to discuss Tamoxifen.  That is their area and not the rad oncs.  I was told I wouldn't need it and honestly I don't think I would have taken it anyway.  My med onc said the side affects for someone my age ( 39 at the time) would be worse than the benefit.  She did say that if I had done a single mast she would want me to take it.  I guess I am really grateful I got actual numbers from my rad onc.  You have really been given the run around.  I so admire all the research you are doing.  I must admit I went in rather blindly.  I was really blind sided by the whole thing.  I heard the numbers from my rad onc and went with it.  Good for you for doing your homework.

dancetrancer

Springtime - thanks for that heads up...and so sorry that happened to you.   I did talk with my RO about it today, and she confirmed they would not radiate any of my nodes. 

Mom3, thanks so much for the empathy!  I'm feeling so drained...it's wearing me down...I broke into tears at the end of the RO meeting - I usually hold it together unless I'm by myself or with my husband.  And, I am so glad for these boards, b/c I knew from you guys to ask to see the MO.  What would I do without this board?  You all are such a great source of knowledge and comfort to me. 

Natters

I get the impression that the younger we are, the more they want to be aggressive with our tx. They don't worry about the SEs as much as we do bc from their point of view, preventing a recurrence is THE most important thing. I'm glad you got some of your questions answered, but sorry that you are still not sure if you need rads or not.

J-Bug

You ladies have a lot of research into this topic already, so I will just add that I was told I needed radiation simply because of tumor size. The chances that some cells got missed is just too big to not do it. However, my tumor was invasive.

You might enjoy the thread I started for all the 6 cm+ people. I find that the treatment plans are very similar. http://community.breastcancer.org/forum/47/topic/778961?page=1#idx_15 

laurakay

I thought I'd tell you my experience, hoping it doesn't muddy the waters. This was one of the hardest parts of the whole bc experience for me, deciding whether or not to have radiation. This was 21 months ago. I was 48. I had lots of DCIS in my right breast--can't remember, but it was plenty, and mx was the only real option. I opted for bmx because my mother died of bc at 52. (I don't have the gene though, go figure.) My path report showed 1.5mm invasive, and 1mm 'clean' margins. No one suggested radiation or anything else, but I was uneasy. (To say the least--sleepless, weeping, panicked, etc...) I consulted with two RO. One said 'no'--due to the single foci, and that the invasive was nowhere near the margin, and other things I've forgotten now. One said (very unhelpfully) that she had no idea what she'd do if she were me. My bs was totally opposed to radiation. He's well-known etc, and, well, I love him. He's been doing this 40 years, so I figured he'd have noticed if 1mm margins for DCIS caused a lot of recurrence. But, well, I didn't totally trust him. I consulted with Dr. Lagios (DCIS expert in CA) who said 'no' to radiation. He looked at the path reports and said that the margin was clean and the duct had been removed completely within the fatty tissue (if you want me to I can find the path report and tell you better if you pm me). Then I saw two medical oncs--one wouldn't say, and sent me tot he RO who said she didn't know what she'd do. That also went to the tumor board, who wouldn't way, and sent me to that same RO who "didn't know." She told me, basically, that it could have dire consequences for my recon, and might not do any good. But that if there was cancer still there (which she said she had no way of even guessing about, but that there probably wasn't---p.s. these people need to speak with more authority...) She scared me as much about radiation as cancer. I hated her. The other one said no radiation, as did the second tumor board. Frankly, I was still going to insist--but then I decided I couldn't put my husband and son through it if there could possibly be no reason to. (another onc had a nice radiation horror story for me) I had to balance that with the idea of putting them through a recurrence of course...One of the things that decided it for me is having one of the ROs tell me that (as you all know, being so good with the stats) that radiation wouldn't necessarily kill any loose cells anyway. It would halve the possibility. If it had been a guarantee, I'd have gone with it. Long story short, I insisted on Evista, and I've been having Lupron shots to put me into menopause. I've had NO problems with it--actually, I feel fantastic. I like the occasional hot flash because it's freezing up here inMichigan.

I'm not trying to impress you, just know how the mind works in this situation--but my doctors are all either at University of Michigan Cancer Center or associated/teachers, etc., at it. So, anyway, I'm not, you know, getting advice from mail-order oncologists...I hope.



It was so hard to make that decision. I guess I wouldn't do anything differently. I did decide that, once I decided, I WOULD make peace with it. I am so not a make-peace-with-it kind of person...but, well, I have! I consider myself cured,(please don't tell me if you think this is delusional...it gets me through the day...) although I am completely into prevention now. I hardly ever think about bc--except, well, that I'm a vegan and I drink green tea all day, etc. I am trying not to kid myself, but I've definitely gotten past the panicky part where some of you are. Still, I can bring back the recall of that panic with a tug, which is why I wanted to chime in here.



Oh! Sorry this is going on so long--but I also insisted on an MRI. (Do other people get these? Why did I have to insist?) It showed 'no residual breast tissue'. I know this doesn't mean there can't be any cancer cell floating around there, but I do feel it means my surgeon did well, and that at least until the next MRI I don't have any cancer there (please don't tell me if you happen to know this might not be the case...) Also, I like to think that my preventive stuff and the Evista could have put to rest any loose cells that, horribly, might have been there. If I'm living in a dreamworld, as I said, don't wake me up! xoLaura

cycle-path

natters: "I get the impression that the younger we are, the more they want to be aggressive with our tx."

That's correct. In very general terms, the younger one is at diagnosis, the more aggressive the tumors usually are. And of course the opposite is also true: the older one is, the less aggressive the BC usually is.

One recent study on Tamox, for example, found that there was little or no benefit to giving it to women diagnosed at age 60 and over. I guess the tumors one gets at that age don't have much "get up and go." 

rk85

I am glad to be rid of my 4cm high grade DCIS tumor- it was so incompatible with me.  I'm generally a laid back pacifist but it was an aggressive grade 3 with lots of "get up and go" in it.  Now that its gone, even 6 weeks post BMX I am still so exhausted!  I am wondering if it is really related to the BMX or just laziness.

Dancetrancer, wondering how today's round of doctor visits went.

nowords

Stage 3 Grade 1 ILC, with less than 1mm margins from a 10 plus cm tumor.  30 rads. Neo Adjuvant chemo failed...7 of 22 positive nodes. Rads 4 weeks from mx. DIEP recon May-2011 almost complete.

No regrets for any of the decisions...but I would probably skip chemo if there is a next time if I was given the same 1 to 3% chance it would do anything...

dancetrancer

Laurakay, thank you for sharing your story!  I like hearing that someone else went through all the trials and tribulations, and I so understand not wanting to hear anything that would make you question things now, LOL.  I would feel the same way.  Make the decision, and put it to bed.  

rk, it is NOT laziness!  It takes so long to feel back to yourself after a BMX.   

It was a 3 hour drive each way to my 3rd RO and 1st MO appt today - so we just got home a short while ago.  I haven't had time to sit down and review my notes, but I will give a brief summary from the top of my head.  First of all, it was so worth going for these extra opinions.  Believe it or not, the RO recommended rads only for the R side (with the anterior margin) and didn't feel it was indicated for the L side! (b/c of the pec fascia being removed).  The MO didn't think Tamoxifen was warranted at all, and really didn't think rads was indicated on either side.  What a surprise to see such different views, and this is from another certified National Cancer Institute center!  The MO does, however, want me to see their BS, who happens to ALSO be a PS (how about that?), to see if they can make a better determination of how much breast tissue remains - she reserves the right to change her opinion if it is felt more breast tissue was left than expected (but I highly doubt that...I really think my BS did a thorough job). She also wants to take my case to the tumor board to get their opinion.  Overall, I just felt so reassured that they are taking a hard look at this, aren't overreacting, yet aren't just giving me a "it's fine, don't worry about it" blow-off.  I was really impressed with my visits today. 

I won't be able to get in for followup until early January.  The MO told me not to worry about delaying rads a bit further (contrary to both RO's who said no > 12 wks post MX is recommended) before making a decision.  

So, I am going to wait until January before making the final call -  nice to have a reprieve since my next recon surgery is coming up in just 8 days.  Got a lot going on!

rk85

That is great news DT!  Gives you a break to be able to just concentrate on this next recon surgery and pick up where you left off later.

I like the idea of rads only to rt side, if needed.  Removes all the heart damage concerns.  But wasn't the chest wall margin close on the left side?  If removing fascia makes that close margin a non-issue, that would really be great. 

How would this BS/PS make a determination of how much breast tissue remains after your BMX?  I just worry with our uncommon type of reconstruction (fat grafting) that doctors don't understand what they are seeing at first.  Hopefully it doesn't involve anything invasive.

dancetrancer

rk, yes, the chest wall was where it was close on the L side.  They both felt since it was DCIS only and the fascia was removed that that reduced the risk considerably (of course not 100%, since some stray cells could always remain), but not enough to strongly warrant rads on the L (the RO did say, she could understand why someone might recommend it, especially if it were Grade 3, but since I am grade 2, it is not as big of a concern).  The RO was more concerned about the R side since that margin is next to the skin, and so no barrier like the fascia was removed.  (However, I have just read the actual path report by them, and it looks like it was LCIS within 1 mm, the focus of Gr 2 DCIS on the R had clear margins...this may be why the MO said she wasn't too concerned...but again I need to listen to my tapes again to be sure!  Lots of info today to process!)  Oh and so now the score on the R path is 2 for DCIS (with one saying LCIS as well), 2 for ADH only.  LOL. And so it goes with the "continuum" and "discrepancy" amongst pathologists when it comes to DCIS and ADH.  

The MO wants to see if their BS/PS has any familiarity with fat grafting, looking at the MRI/mammo's that were done, etc.  B/c fat grafting is completely new to her, she wants to see if he has any input on it, since he is a PS also and may have read about it.   I am also going to try to get them to consult with my PS so that they understand how to interpret my mammo's/MRI I had done better.  I'm hoping this will be a good opportunity for collaboration and learning - the MO definitely seemed pretty open-minded to learning about it before jumping to conclusions.  I was really encouraged.