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Category: TNBC Forums
Forum Name: Let's Talk About Radiation Therapy
Forum Description: A place to discuss Radiation Therapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=10406
Printed Date: Oct 22 2019 at 3:57pm
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Topic: our new forum
Posted By: SagePatientAdvocates
Subject: our new forum
Date Posted: Oct 16 2012 at 10:51am
Dear all,

Thanks to the TNBC Foundation for adding this important forum.

I am hoping our marvelous women will come here to discuss their experiences and to ask questions.

Radiation therapy is considered, after chemotherapy, as standard of care for most women with TNBC. I am hoping that this new forum will help all of us become better educated about radiation therapy and some of the current debate about when or if radiation therapy should be used.

No one here will recommend a course of radiation therapy or not to anyone but the discussion will make us more knowledgeable. Every woman needs to decide her course of treatment after consulting with her medical team.

At the last SABCS conference I attended there were some striking differences of opinion regarding the use of radiation therapy under certain circumstances. My hope is that as we share experiences and current research on the topic we can all become more knowledgeable.

As with chemotherapy, it has been reported here on other threads that some women have a difficult time with radiation therapy and others seem to tolerate it quite well. There is no one-size-fits-all here but I am hopeful that everyone can share their experiences and that, again may help our community to have good questions to ask the radiation oncologists. 

One woman I helped a year ago had red hair and very fair skin. She aggressively questioned the radiation oncologist about what he was going to do to best protect her. The oncologist made sure a radiation physicist spent a lot of time on her case in an effort to get the best 'angles' and treatment time so that the consequences of the treatment were less damaging. 

warmly,

Steve






-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates



Replies:
Posted By: Reetz
Date Posted: Feb 06 2013 at 3:08am
   I had radiation 5 yrs ago with my first TNBC along with ACT and lumpectomy. A recurrence in 2012 TNBC, chemo TC,DB mastectomy, Hysterectomy, and BRCA1 positive, and Inflammatory BC..
   This time I had different opinions about radiation, since it was the same side.Three tumor boards had conflicting opinions. I insisted on more expert network and came up with 4 against repeating radiation, and only one for the radiation. My chances of local recurrence is higher but the side effects of more radiation to the same area was bad. So I pray I made the right decision.

-------------
TNBC 2006,Lumpectomy,ACT,Rads X 35. TNBC,IBC 2012,TC chemo x 6,DB Mastectomy, Hysterectomy,BRCA! positive


Posted By: SagePatientAdvocates
Date Posted: Feb 06 2013 at 9:17am
Dear Reetz,

Thanks for posting on this important topic. I work as a volunteer patient advocate with many women with TNBC. There are exceptions, but it has been my experience that most radiation oncologists do not recommend radiating the same area again. So, I feel your choice seems reasonable and I hope your treatment plan helps you. Our thoughts and prayers are with you.

Here is some information from breastcancer.org on the subject-

http://www.breastcancer.org/treatment/radiation/when_appropriate

What is very frustrating, from my experience, is that different cancer centers have different philosophies about the various types of radiation therapy to be utilized, at times. There are several large trials going on to try to determine which radiation protocol is more effective.

Reetz, I applaud your efforts to get a tumor board involved and again, we wish you the best.

warmly,

Steve

When Is Radiation Appropriate?

Last modified on September 17, 2012 at 6:58 pm

http://www.breastcancer.org/es/tratamiento/radiacion/cuando_adecuada" rel="nofollow - Leer esta página en Español


Radiation therapy has an important role in treating all stages of breast cancer because it is so effective and relatively safe. It may be appropriate for people with stage 0 through stage III breast cancer after lumpectomy or mastectomy. Radiation can also be very helpful to people with stage IV cancer that has spread to other parts of the body.

Women who are pregnant should not have radiation. Radiation is never safe during pregnancy. Visit the  http://www.breastcancer.org/tips/fert_preg_adopt/bc_pregnancy/treatment" rel="nofollow - Treatment for Breast Cancer During Pregnancy  page for more information.

After lumpectomy

Radiation therapy is recommended to most people who have http://www.breastcancer.org/treatment/surgery/lumpectomy" rel="nofollow - lumpectomy  (lumpectomy plus radiation is sometimes called breast-preservation surgery). Radiation attempts to destroy any cancer cells that may have been left in the breast after the tumor was removed.

Typically a doctor will recommend lumpectomy followed by whole breast radiation if the cancer is:

  • early stage
  • 4 centimeters or smaller
  • located in one site
  • removed with clear margins

After mastectomy

Radiation therapy may be recommended after  http://www.breastcancer.org/treatment/surgery/mastectomy" rel="nofollow - mastectomy  to destroy any breast calls that may remain at the mastectomy site. During breast removal, it's difficult to take out every cell of breast tissue, especially the tissue behind the skin in front of the breast or back along the muscle behind the breast. Usually any leftover breast cells are normal. But because it's possible for some breast cancer cells to linger, there is a risk of recurrence in the area where the breast was. Based on your pathology report, your doctor may recommend radiation therapy if you’ve had a mastectomy.

These factors are associated with a high risk of recurrence after mastectomy. Radiation may be recommended if any of these factors are present:

  • The cancer is 5 centimeters or larger (the cancer can be 1 lump, a series of lumps, or even microscopic lumps that together are 5 centimeters or larger).
  • The cancer had invaded the lymph channels and blood vessels in the breast.
  • The removed tissue has a positive margin of resection.
  • Four or more lymph nodes were involved OR, for premenopausal women, at least 1 lymph node was involved.
  • The cancer has invaded the skin (with locally advanced or inflammatory breast cancer).

Based on these risk of recurrence factors, about 20% to 30% of people are considered at high risk of recurrence after mastectomy. Radiation would be recommended to help reduce this risk by up to 70% (for example, a 30% risk may be reduced to just under 10%). Treatment is given to the area where the breast used to be and sometimes to the lymph node regions nearby.

Some people have a moderate risk of recurrence. They're in the "gray zone" because the cancer has characteristics that increase their risk, but not to a point where the risk is considered high. For example, you might have a 4 centimeter cancer and 2 lymph nodes involved. You and your doctor need to carefully consider your unique situation. Some people in the gray zone want to know they have done everything reasonable to treat the cancer, to avoid or reduce the risk of ever having to deal with it again. Others in the gray zone may decide not to go through with radiation therapy after a discussion with their doctors.

When radiation is NOT an option

Radiation is not an option for you if:

  • you have already had radiation to that area of the body
  • you have a connective tissue disease, such as scleroderma or vasculitis, which makes you extra-sensitive to the side effects of radiation
  • you are pregnant
  • you are not willing to commit to the daily schedule of radiation therapy, or distance makes it impossible

Can radiation therapy be repeated to the same area again?

Full-dose radiation is usually given only once to a particular part of the body. Your normal tissues can safely tolerate a limited amount of radiation. Your radiation oncologist knows how to pick the right dose of radiation to accomplish 2 things:

  • reach the maximum therapeutic dose — the amount that's likely to destroy cancer cells
  • avoid or minimize side effects to the normal tissue

After radiation is over, the normal tissues heal and get back to normal. But because you have received about as much radiation as your healthy cells can safely handle, it is not possible to treat this area again with another full dose of radiation. If cancer returns to the same breast area, depending on the radiation dose you already received, you may or may not be able to receive a limited amount of additional radiation treatment in that same area. Your doctor will know what the limits are, and together you can decide if this is a good treatment option for you.

It's important to note that this information refers to treating the SAME part of the body a second time. If cancer should occur elsewhere in your body (including the other breast), radiation can be used to its full effect.

The timing of radiation

The sequence and timing of radiation treatment depends on your individual situation. Radiation may be given immediately after surgery or after other forms of treatment. Here are some examples of various treatment sequences that involve radiation:

  • surgery → radiation → possible hormonal therapy
  • surgery → chemotherapy → radiation → possible hormonal therapy
  • chemotherapy, targeted therapy, or hormonal therapy → surgery → radiation → possible hormonal therapy

You may be wondering in what order you'll have treatments and how your doctors decide which one comes first, second, etc. In general, when it's part of your treatment plan, chemotherapy is usually given first after surgery. Radiation then follows chemotherapy — it's not usually given at the same time. Depending on what chemotherapy you’re taking, there can be anywhere from 2 weeks to a month between the last chemotherapy dose and the start of radiation. For example, the wait is about:

  • one month between the last dose of an anthracycline-type chemotherapy (Adriamycin [chemical name: doxorubicin], Ellence [chemical name: epirubicin]) and the start of radiation
  • two to 3 weeks between the last dose of a taxane (Taxol [chemical name: paclitaxel], Taxotere [chemical name: docetaxel], or Abraxane [chemical name: albumin-bound paclitaxel]) and the start of radiation

When chemotherapy is not part of your treatment plan, radiation is usually given soon after surgery. The timing depends on the type of radiation you'll be receiving:

  • External beam radiation, the most common type, usually starts about 3 to 6 weeks after surgery.
  • Partial-breast radiation is usually given immediately after surgery.
  • Intraoperative radiation is given in the operating room during surgery, just after the cancer tissue has been removed but before the opening in the skin has been closed.


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: beck
Date Posted: Feb 06 2013 at 3:16pm
when i was diagnoised with er postive in 2007 . i didnt have it in my breast , but 10 yes 10 nodes in arm pit area, i had all of the affected ones removed plus 7 more, that was 5 years ago, i did chemo and they made the remark they had to hit it hard with rad. i tend to tolerate things well, , i used alot of creams, they also did my breast, but under arm got it so hard that skin pealed kind of deep, but healed very fast, i did ok, and have never had a reacurrance on that side, for the tn on other side i had no nodes involed, and they have the very lastest in radiation equpment at the cancer center, that had me do the holding my breath thing because it was on left side, i got red, and pealed some , but not to much else, i think it is wise to do rad. treatments, but they said i cant ever do it again, i would have to lose my breasts Beck


Posted By: arabella
Date Posted: Feb 08 2013 at 7:50am
I am curious, do you have to hold your breath for radiation when it's on the left side???  If so, for how long?

TIA,
Kaye


Posted By: beck
Date Posted: Feb 08 2013 at 8:55am
i only held my breath like 4 different times through out the rad treatment fot left side , they make sure it isnt long so you arnt uncomforable, they would talk to me through the speaker , and tell when to hold then when to release you only do it for about 20 seconds each time i think one of the times was a little longer,   beck


Posted By: Lee21
Date Posted: Feb 08 2013 at 2:47pm
It's called respiratory gating and the purpose is to move your heart out of the radiation field.  In the past, left sided radiation is associated with damage to the heart.


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Annie
Date Posted: Feb 09 2013 at 9:31am
    Hi All,   I do not remember ever having to hold my breath. It would be good for the Oncologists to have a somewhat universal protocol on this but lets face it ego can always get in the way. Hopefully the more current methods and equipment reduce the incidence of heart damage, sure hope so...Love, Annie

-------------
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012


Posted By: Lee21
Date Posted: Feb 11 2013 at 3:09pm
For breast cancer, respiratory gating is reserved for radiation to the left side since most of the heart lies on that side.  Additionally, as I understand it, the rad onc determines whether respiratory gating is required during simulation.  It is possible that one's physique is such that no gating is required even if on the left side. It is generally not used for radiation to the right side.
I found this link to the UCLA website explaining respiratory gating:
http://radonc.ucla.edu/body.cfm?id=102" rel="nofollow - http://radonc.ucla.edu/body.cfm?id=102



-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Annie
Date Posted: Feb 11 2013 at 4:55pm
Hi Lee21,   This is interesting, makes sense. I just had 8 x-rays to check for anything under my shoulder, ribs, probably a pinched brachial nerve and lymphedema but they too had me hold my breath for some of them which we are used of doing of course for something like this. I did not have it during radiation treatment but I was probably in the clear... thank you and take care...Love, Annie

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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012


Posted By: sosue55
Date Posted: Mar 07 2014 at 8:04pm
Thanks for sharing. I am scheduled to start radiation 25 treatments in April...I have 2 more chemo treatments left to do. I really am leery about getting radiation but reading the posts on here have decided it is necessary to give myself the best chance for survival. I had a lumpectomy on left breast in the fall of 2013, TNBC, negative for BRCA gene mutation, have done 6 cycles of chemo so far. A few side effects but what I miss most is my swimming. Previously was doing my exercises at the pool at least 3x a week. I will be so thankful when I can put this behind me and announce that I too am a survivor!


Posted By: junobeach
Date Posted: Mar 13 2014 at 10:22am
Hello all, Ive been getting by a little easier these past months with the support of this forum. I am close to the end of my chemo.I have been to 3 drs for radiation consultations. I have not received a comfortable regime yet from any. My question is, is radiation always a must with tnbc? I was a stage 2, had a double mastectomy, 2 nodes with isolated cells (considered neg), tumor size 2.5, and overall grade 2. Another thing I would like to understand more. Is the ki67, I notice that most of tnbc dxs have a high #. My ki67 was <3% not something I see at all on this forum.
Deb


Posted By: Lillie
Date Posted: Mar 13 2014 at 12:42pm
Hello Deb,
Welcome to the TNBC site.  I'm glad you came here for Support.
I did not have radiation.  I had a mastectomy and took part in a clinical trial which did not require radiation after a mastectomy.  My chemo was dose dense cytoxin and adriamycian x 4 and then dose dense taxol and gemzar x 4.  (the trial drug was adding gemzar to an aggressive Standard of Care regimen to see if gemzar made a difference.) 
What chemo regimen are you on?  Sometimes that makes a difference since cancer can travel through the vascular system and chemo is all we have to fight with. 
 
I am sure others will be posting to share their stories and thoughts about your question.  This is a wonderful place for support because we all UNDERSTAND about TNBC.
 
God Bless,
Lillie
 
 


-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: sosue55
Date Posted: Mar 13 2014 at 11:47pm
I also had 4 rounds of A/C and 4 of Taxol but they had to cut the Taxol to 77% as it burned my finger tips so badly the first round. I did not have mastectomy just lumpectomy...after I learned that my BRCA 1 and BRCA 2 came back negative, my surgeon left that option up to me.  I am not sure further surgery would have made much difference in that the 3cm lump had clear margins, although I had one sentinel node removed as there was evidence of microscopic cells in one. Then there was controversy over whether to take more or leave them in...I'm a bit confused about that. Only that I guess they thought the chemo would take care of the cancer cells followed by 25 rounds of radiation.



Posted By: junobeach
Date Posted: Mar 14 2014 at 8:10am
Good morning,
        I have been doing a dose dense aggressive regimen. a/c 4xs every other week and then taxol 4xs every other week. My oncologist never suggested any clinical trial. I wish I would have read your post sooner on this subject. Im off for a blood draw the morning. it appears my liver has some inflammation. Im so hoping the counts are better today. Does anyone know of anyone having to put chemo on hold from this?
Have a blessed day everyone.
Deb


Posted By: 123Donna
Date Posted: Mar 14 2014 at 9:43pm
Deb,

It's quite common for treatment to be delayed. Chemo aggravated my liver enzymes and caused some treatment delays. Sometimes the onc will reduce the dosage.

Donna

-------------
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



Posted By: Powder
Date Posted: Apr 19 2014 at 9:21pm
Junobeach...I had two delays in my chemo.  I didn't tolerate the Taxol and was hospitalized each time after the first two rounds.  First time with C-diff and the second with Pancreatitis.  My doctor didn't want to risk repeated exposure to Taxol after that and switched me to Abraxane.  I just survived my first treatment without hospitalization!  One more and done.  Radiation next.


Posted By: CrunchyGirl
Date Posted: Apr 27 2014 at 12:02am
Lillie, did the Gemzar trial you were in decide that it was beneficial? I am having a mastectomy with no radiation as well and I wonder what else there is to do instead of radiation since I don't need it.

-------------
3cm in left 31yrs 4 Red devil, 12 taxol, neg nodes, surgery July 2014. Tumors shrunk by 1cm all negative. Now cancer Free!


Posted By: MaryinSarasota
Date Posted: Jun 09 2016 at 6:37am
Wow Steve, you are like that Energizer bunny....still going. Glad to see you still here. Did they happen to mention anything about late effects of radiation treatment or a link where I could find info on sternal wall collapse? It's been 7 years.


-------------
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells


Posted By: SagePatientAdvocates
Date Posted: Jun 09 2016 at 8:37am
Hi Mary,

yes, as Mark Twain said, "the rumors of my death have been highly exaggerated."  Smile
Just extremely busy helping some folks. I am flying home today and if wifi working will try to do some research for you.

Congrats on 7 years...My daughter's 12th anniversary is in two months and she is NED and fit.

warmly,

Steve 

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Ssam
Date Posted: Jul 06 2016 at 8:25am
Dear Steve, I just wanted to offer a positive experience of radiation, so far.  I have very small breasts and had 15 rads + 5 booster rads in April 2016 after 2 lumpectomies and although tiring, found the whole experience to be very manageable and almost pain free.  I had some reddening towards the end, but used bio oil and E45 3 times per day, every day which worked well for me.  3 months later now and my breast seems fine from the rad treatment.  Hope this might help other ladies who are worried going into this type of treatment.

-------------
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.


Posted By: SagePatientAdvocates
Date Posted: Jul 06 2016 at 9:04am
Hi Ssam,

thank you for sharing your positive story with us...

I am sure all here wish you the best of luck.

Next month will be my daughter's 12th year anniversary. She is NED (No Evidence of Disease). We are so thankful.

warmly,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: romnessprite2
Date Posted: Jul 07 2016 at 1:29am
Hi. I had 25 radiation treatments and got a very mild sunburn on the last 2 days. That was june 2. Now Im all healed up. I used fresh aloe vera plant leaves. It was amasing. I put it on before bed and by morning it was a lot better. I was skeptical of it but my friend bought me a small plant and even the nurse was surprised. Its kind of gooey clear stuff but dries quickly.

-------------
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+


Posted By: 123Donna
Date Posted: Jul 07 2016 at 7:54am
Romnesprite,

I tried everything they suggested, but like you, found the actual aloe plant to work the best.  The relief was amazing.  My friend gave me their very old and large aloe plant when I was going through treatment.

Donna




-------------
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



Posted By: Nankub
Date Posted: Oct 18 2016 at 4:53pm
Hello tnbc tribe,
I'm getting ready to start radiation to a 4cm met on my adrenal gland.
I'm told I will be in a type of body cast and it will take 3 sessions to destroy it.
Has anyone had this type of radiation? I keep seeing 20+ treatments?
The same doc that did my 2 cyber knife treatments on my brain Mets is doing it. With that they put your head in a halo (horror) to be perfectly still and it only required one dose to each tumor. I had 5 tumors the first time(2015) and 1 the second(2016) there are 3 still showing up on the mri and since they were hit they are now dead and my body will clear them out like the others.
Any info or advice would be greatly appreciated. This radiation will keep me from having to go back on chemo

Thanks, Nancy.

-------------
Diagnosed 3/13/2015 stage 4, age50, BRCA1pos,triple neg both breasts+lymph nodes,Mets to bone/spine rib,lungs,brain.8 months chemo,cyber knife on brain in 2015,2016.4cm tumor on adrenal found 9/30/16


Posted By: Nankub
Date Posted: Oct 18 2016 at 5:02pm
Steve,
I also wanted to tell you how happy it is to hear of your daughters good health.

Keep shining bright,
Nancy

-------------
Diagnosed 3/13/2015 stage 4, age50, BRCA1pos,triple neg both breasts+lymph nodes,Mets to bone/spine rib,lungs,brain.8 months chemo,cyber knife on brain in 2015,2016.4cm tumor on adrenal found 9/30/16


Posted By: SagePatientAdvocates
Date Posted: Oct 18 2016 at 9:37pm
Hi Nancy,

I sincerely wish you good luck in your upcoming treatment.

I think it is absolutely extraordinary that, with everything you have and are enduring with your own journey, that you found it in your heart to think about me and my daughter.
Incredibly considerate of you and I thank you.

We are all blessed to have this forum in our lives, populated by so many lovely, caring people.

warmly,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates



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