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brocha View Drop Down
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    Posted: Aug 04 2019 at 3:06am
Hi out there--

In Feb I had lumpectomy to remove left-sided posterior 7mm tumor -- pathology report said it was TNBC, and that there was 1.2 cm high grade DCIS adjacent to it as well as patchy ALH/LCIS. Excisional biopsy on right showed ADH. Sentinel node was clear.

Just finished dose dense AC-T recommended by MO at Sloan-Kettering.
Now facing question of radiation vs. mastectomy. I say "vs." because the doctors I've asked say that they wouldn't recommend radiation with a mastectomy in this case. (Should I challenge this?)

I'm confused by the different, and sometimes contradictory perspectives on this issue, and wonder if any of you with experience would be willing to weigh in:

1) The rad-oncs that I've spoken to said that radiation can get to places -- e.g. chest wall -- where mastectomy can't reach. (Surgeon vehemently denied this!) Does that put radiation at some advantage, therefore, in my case--since the lumpectomy was posterior and close to the chest wall?

2) I asked the rad-onc at Sloan whether TNBC is particularly radiosensitive (I got that feeling after reading some studies on this forum), and whether that would be a point in favor of radiation. She said she wasn't so sure about whether that was the case.

3) One (famous) rad-onc went as far as to say that she prefers radiation because she is concerned about the assault on the immune system after a trauma like mastectomy and its effect on the body's ability to fight on a systemic level. (I'd never heard anything like that before or since).

4) The Sloan surgeon said that rad-oncs would never admit this, but he felt that skinny people are more vulnerable to lung issues after radiation. The rad-oncs said they had never heard of such a thing. Anyone ever heard of this?
     
5) I had pericarditis during part of chemo (which the cardiologist thought probably came from a virus, since I'd had a chest rash and low fever shortly before it was diagnosed) -- how concerned should I be about this when considering radiation?   

6) It was only on this forum that I read about proton therapy, IM radiation, axilla radiation--no doctor ever discussed them with me. Are they ever used in T1bn0 TNBC situations?

7) I'm also confused about the different time frames for radiation---one RO prescribed 6 weeks, one 4 weeks (described as a kind of "dose-sense" radiation used in England and Canada) and one 3 weeks! Is there a preferred course for TNBC?

8) I would have thought that with all the irregularities in the breast tissue that was sampled, mastectomy would have been recommended--but I haven't found this to be the case. The docs just say "it's your choice...survival is the same either way." Do those of you who have been paying attention to this issue for many years as TNBC patient supporters have a leaning either way?

WHEW! I think that's enough for now. Sorry to go on and on, but there are so many things to think about, and so quickly.

Best to you all---
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2019 at 11:43am
Hi Brocha,

I'm sorry that I missed your post and questions.  I'm not a medical professional so can only share from my experience.  It's hard to navigate the cancer world and all the options/choices.  You are asking all good questions.  Here's my thoughts to your questions:

1) The rad-oncs that I've spoken to said that radiation can get to places -- e.g. chest wall -- where mastectomy can't reach. (Surgeon vehemently denied this!) Does that put radiation at some advantage, therefore, in my case--since the lumpectomy was posterior and close to the chest wall?

A:  I believe this could be true, especially if the tumor was close to your chest wall or the margins weren't good.  I guess it depends on how close to the chest wall and what type of margins did the surgeon get?

2) I asked the rad-onc at Sloan whether TNBC is particularly radiosensitive (I got that feeling after reading some studies on this forum), and whether that would be a point in favor of radiation. She said she wasn't so sure about whether that was the case.

A:  I'm not sure TNBC is any more sensitive to radiation than other bc's.

3) One (famous) rad-onc went as far as to say that she prefers radiation because she is concerned about the assault on the immune system after a trauma like mastectomy and its effect on the body's ability to fight on a systemic level. (I'd never heard anything like that before or since).

A:  I never heard this.  Sure a mastectomy is a major surgery compared to lumpectomy, but I don't know about the assault on the immune system.  I always felt that the different specialties were slanted toward their treatments, eg.  surgeons recommend surgery, oncs recommend chemo as primary tool, rad oncs recommend radiation to treat.

    
5) I had pericarditis during part of chemo (which the cardiologist thought probably came from a virus, since I'd had a chest rash and low fever shortly before it was diagnosed) -- how concerned should I be about this when considering radiation?  

A:  I'd ask your cardiologist if you are at increased risk with radiation treatment.

6) It was only on this forum that I read about proton therapy, IM radiation, axilla radiation--no doctor ever discussed them with me. Are they ever used in T1bn0 TNBC situations?

A:  I'm not sure about the other types of radiation being used on your stage, but if you are concerned about surrounding tissue damage with it being close to the chest wall and lungs, then ask about IMRT or Proton radiation.  Sometimes it's an insurance issue where they won't pay for the more specialized radiation treatments.  I had IMRT radiation because of the location of the recurrence to the internal mammary nodes under my sternum.  My treatment center at the time was one of the few that had the newer technology and luckily my insurance covered it.

7) I'm also confused about the different time frames for radiation---one RO prescribed 6 weeks, one 4 weeks (described as a kind of "dose-sense" radiation used in England and Canada) and one 3 weeks! Is there a preferred course for TNBC?

A:  I know they want your body to recover from chemo and get your immune system stronger before starting radiation.  I've read that radiation usually starts 3 - 4 weeks after finishing chemo.

8) I would have thought that with all the irregularities in the breast tissue that was sampled, mastectomy would have been recommended--but I haven't found this to be the case. The docs just say "it's your choice...survival is the same either way." Do those of you who have been paying attention to this issue for many years as TNBC patient supporters have a leaning either way?

A:  It sounds like you had lobular too and atypical ductal hyperplasia (ADH) in the other breast?  "Atypical ductal hyperplasia (ADH) is not a form of breast cancer. Rather, it is a marker for women who may have a risk factor for developing breast cancer in the future."  I had a bilateral mastectomy and the surgical path report on the "good" breast came back with ADH too.  When I asked my surgeon after surgery if that meant I would have gotten bc in the other breast, she just said you don't need to worry about that now. 



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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brocha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote brocha Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2019 at 11:52pm
Thank you so much for your thorough reply!
I am very grateful to you for sharing your knowledge and experience. I hadn't even heard of IMRT or proton radiation, and none of the rad-oncs even mentioned it! I hope to investigate it further.
Your outreach is an inspiration. I hope that I, too, will be able to help others as I learn more.
Wishing you good health and happiness always.
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Plume View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2019 at 11:34am
Brocha, I think I'll just jump in at your question 4.  Yes, I'm well not skinny but slim and have small breasts and yes I did have massive problems after rads.

I spoke about the possibility of the rads either affecting my heart (have read that rads on the LEFT side could affect the heart as that's the same side) or my lungs but the radiotherapist emphatically said no.

However, I have since learned from my pulmonologist (as well as 2 physios) that the rads DID impact on my lungs.

My lungs were already compromised by asthma so maybe I was more vulnerable.  But I had an incessant cough for about 9 months after rads had finished.  The cough was dreadful, stopped me sleeping, took away my appetite, gave me urinary incontinence and generally made social life or even going for a walk next to impossible.

At one point, I got so depressed that I wished everything would just be finished, over and done with and no more sufferings.

I had lots of chest and urinary infections and saw the docs many, many times.  No antibiotics seemed to solve the coughing problems. 

Eventually, I got referred to my wonderful pulmonologist and I had a scan.  The scan showed bubbles of emphysema in both lungs but I have no means of knowing whether they were there BEFORE rads as my lungs have always been weak.

I had another type of stronger antibiotics and 11 sessions of respiratory physio.  At the moment, all is better except for the insomnia.  Have had insomnia now for the 2 years since the TNBC diagnosis and I think it is now going to be difficult to get back to normal sleeping.  I am trying different remedies found on the internet.

I hope your lungs are stronger than mine and that you won't have my problems but as your question wasn't answered by the incomparable Donna, I thought I'd tell you my experience.

Anyway, all the best for your recovery!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2019 at 11:59am
Plume,

I'm so grateful you responded to question 4!  I'm not skinny or slim, so felt I couldn't help on this subject:)  I have to say that at the completion of my 40 rads treatment I ended up with radiation pneumonia.  It started out with a cough that got much worse and a high fever.  I called and talked to my onc and they prescribed antibiotics which helped me to recover.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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brocha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote brocha Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2019 at 10:51pm
Thank you both for responding! It feels good not to be alone in the echo chamber of my mind -- your caring voices are so comforting.

I'm sorry to hear about both of your radiation experiences. Plume, at the risk of bringing up a sensitive topic, I have heard that medical marijuana may be of value for insomnia. I don't know if it's legal in your state, but I thought I should mention it.

The rush to gather information and make decisions in the midst of anxiety, side-effects, fatigue, etc. is so difficult---I'm grateful to you all for reaching out to try to make it easier.
Best,
Brocha
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2019 at 2:20am
Brocha is right, marijuana does help with insomnia. And stomach issues. Inability to eat during chemo. And anxiety. And bone pain. I wished I'd used it during my first go round with TNBC treatment. It was a godsend when Carboplatin was trying to kill me this time. I had the full blessing of my oncologists and pain management dr. One of them actually said, by all means go for it! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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