Haven't met with a RO
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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=11349
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Topic: Haven't met with a RO
Posted By: Virginger
Subject: Haven't met with a RO
Date Posted: Jul 21 2013 at 11:38pm
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Hi everyone haven't met with a RO yet, 7/26 is last chemo, #6 of 6. Are they're any question I should ask...had a lumpecty in April and 4 nodes taken...clear margins and nodes were cancer free. My MO and surgeon said something about 35 radiations but not sure.. Thanks for you help and advice.
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Replies:
Posted By: SagePatientAdvocates
Date Posted: Jul 22 2013 at 9:40am
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Dear Virginia,
welcome to our TNBC Foundation family. Glad you found us but sorry you had need to.
What you are describing is 'standard of care' for most TNBC where you have a lumpectomy and chemotherapy. That is normally followed by 5.5 weeks of radiation therapy.
You should try to meet with a radiation oncologist to discuss the plan and also to be sure that you are getting treated at a good facility. Most women, from my experience, seem to feel that all radiation therapy is equal. It may not be. At a really good facility the equipment is newer and more precise. There are radiation physicists on staff to determine the best individual plans for each patient, there may be molds created for your head so that your body does not move at all, the techs will be excellent and the radiologists will be excellent.
You may have to go to a NCCN or NCI facility to find such an environment.
good luck to you..
warmly,
Steve
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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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Posted By: Annie
Date Posted: Jul 22 2013 at 9:49am
Hi, Glad to hear you are almost done of Chemo. There is a link called...Lets Talk About Radiation Therapy...you will see just beside the TNBC Forums. That may be a help to you.
Off the top of my head is get some Aloe Vera, especially the plant. You may get redness later on in the treatments and I found that this was THE most helpful thing for any burning or redness that may occur.
Do as they say about the creams and be vigilant about it, get the rest you need...I know I was so glad chemo was done that I did not pay enough attention to the rest I needed when on Radiation. I do know everyone is different but I feel a person still needs rest while having radiation...the combination of radiation and chemo do add up so take care.
I am sure there are other suggestions coming along and I wish you all the best with the Radiation...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
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Posted By: Virginger
Date Posted: Jul 22 2013 at 10:46am
Thanks and keep the advise coming...Steve I feel i'm with a pretty good group. We have a huge cancer center, a pink house and a place called the Buddy Kemp house here in Charlotte. They are even starting a Triple Neg support group right here in Charlotte. First meeting will be next Tuesday July 30th. I've only 'met' one other Triple neg in person.Annie..i keep Aloe Vera in my fridge already, but WILL get a plant. Great suggestion.
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Posted By: Grateful for today
Date Posted: Jul 30 2013 at 12:16am
Virgina,
Hoping you get all the information and answers to your questions at your Radiation Consult.
Things you may like to consider asking if not already on your list:
***1. For all left sided post breast surgery radiation:
Very important during consult to discuss if special breathing techniques will be used to decrease
amount of radiation to the heart. If your center does not offer special breathing techniques,,
request a 2nd opinion at a center that has experience with this.
Note: I am not saying what techniques are or are not needed for left sided radiation.
I am saying every patient today is entitled to a radiation consult where the option of using
the special breathing techniques is explained and recommendation given for one's
particular situation. (Consult by rad onc experienced in breathing techniques.)
"Ask your radiation oncologist if deep inspiration breath holding makes sense for your situation
and whether they are able and comfortable performing this technique. Unless you ask about it
you may never know if you could have received it. This is your life, so don’t be concerned about
hurting anyone’s feelings by asking for a referral or second opinion to a radiation oncology center
that has experience using this technique." Quote from:
http://www.integrativeoncology-essentials.com/2013/05/take-a-deep-breath-in-and-hold-a-20-second-technique-reduces-radiation-to-the-heart-and-lungs-during-breast-radiation/" rel="nofollow - http://www.integrativeoncology-essentials.com/2013/05/take-a-deep-breath-in-and-hold-a-20-second-technique-reduces-radiation-to-the-heart-and-lungs-during-breast-radiation/
2. Ask for skin care instruction sheet. Each center has different skin care recommendations.
If you have a really good non-alcohol skin moisturizer and it's not on the center's list, ask if
you can use it/or use the center's recommended ones.
Here's some links to info on special breathing for left sided radiation:
Six-year experience routinely using moderate deep inspiration breath-hold for the reduction of cardiac dose in left-sided breast irradiation for patients with early-stage or locally advanced breast cancer.(2013)
http://www.ncbi.nlm.nih.gov/pubmed/22270108" rel="nofollow - http://www.ncbi.nlm.nih.gov/pubmed/22270108
Respiratory Gating for Radiotherapy: Main Technical Aspects and Clinical Benefits (2013)
http://www.hindawi.com/isrn/pulmonology/2013/519602/" rel="nofollow - http://www.hindawi.com/isrn/pulmonology/2013/519602/
Take A Deep Breath In And Hold: A 20 second technique reduces radiation to the heart and lungs during breast radiation (2013)
http://www.integrativeoncology-essentials.com/2013/05/take-a-deep-breath-in-and-hold-a-20-second-technique-reduces-radiation-to-the-heart-and-lungs-during-breast-radiation/" rel="nofollow - http://www.integrativeoncology-essentials.com/2013/05/take-a-deep-breath-in-and-hold-a-20-second-technique-reduces-radiation-to-the-heart-and-lungs-during-breast-radiation/
New breath-hold treatment for breast cancer patients uses video surveillance to spare heart from radiation
http://www.utswmedicine.org/voices-views/articles/year-2013/breath-hold.html" rel="nofollow - http://www.utswmedicine.org/voices-views/articles/year-2013/breath-hold.html
With caring and positive thoughts,
Grateful for today...........Judy
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Posted By: Virginger
Date Posted: Jul 30 2013 at 10:53am
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THANK you so much Judy...and the Left Side is important to me...that's where the lump was....doing research NOW....thanks for the links.... Everyone here is SO helpful and I am grateful for all the support~
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Posted By: Grateful for today
Date Posted: Aug 02 2013 at 9:59pm
Virginia,
I had posted some Radiation Tips before.
Pick and choose what sounds helpful. You know yourself best.
If anything I have posted is contrary to your instructions, follow the instructions from
your radiation treatment team until you have an opportunity to discuss the matter with them.
If you will have tattoo marks:
Some center use tattoos for markings for treatments, other places use some kind of non-permanent marker.
I had tattoo markings. The one that was highest on my chest turned out to be the largest and darkest one.........and can easily be seen with certain clothing. Some of the other tattoo came out smaller and
lighter . Usually, none of the tattoos can be seen.
This may not be a matter of concern to you. If not a concern, just disregard the following.
Depending on the radiation treatment plan fields, this matter may not not even be an issue for you.
Apparently, one can have the tattoo marks removed by laser or other methods after treatment.
It seems some radiation oncologists prefer one keeps permanent markings of the radiation field.
Would suggest to anyone having permanent tattoos that include higher chest fields to:
1. Ask that special attention be paid to the central highest tattoo that might be seen with certain clothing.
2. Later, I spoke with staff and suggested they review their
procedures:
Were some staff able to do smaller tattoos than others.....if yes, what did they do differently?
Was there more updated equipment to make smaller permanent marks?
( I did not question the necessity of tattoo marks to be correctly positioned and to be seen
for the radiation therapy machine ......just pay attention to size and intensity of color. )
Did the way the tattoo marker was held effect the size?
When more then one tattoo made with the same inking.......was the 2nd or 3rd tattoo mark lighter?
If your center uses any type of markers on the skin:
Until you find out if any of the markings rub off, wear clothes (or men's undershirt under
your clothes) that if get marked you won't be concerned about.
If you wear your favorite tops...and get markings on it....may take some scrubbing to get off.
The markers your center uses may not come off on clothes.
Just maybe don't wear your best top 1st few times.
Skin lotions and skin pampering from Day 1.
Instructions for skin care per your radiation team.
Avoid lotions/creams with alcohol in them.
Usually told not to put ANYTHING on skin just before and few hours before treatment.
(Follow your center's instructions)
The lotions my center recommended were:
Lubriderm, Eucerin, Aloe Vera lotion.
My center did not feel the "special more expensive radiation creams" were any better than
non-alcohol skin creams.
Mild soaps..... like Dove, Basis.
I think everyone's skin responds to different creams/soaps........if you have good gentle
products before you start radiation.....check them out with your radiation team.
Knew someone who is blond, blue eyed who used Aloe vera gel after treatment and repeated
it a second time daily. She did not even get pink!!!!!!
This is what I used......
Continued Dove (non-fragrance) soap.......very little soap to radiation area.
After radiation treatment.......applied Miaderm cream
later in day: use 1/2 lubriderm mixed with 1/2 aloe vera gel.
(some people can develop sensitivities to aloe vera.
initially tested aloe vera gel on non-radiation area.
decided to dilute it with lubriderm)
used the lubriderm/aloe vera gel again.
used miaderm at bedtime.
I had only mild pinkness at end of treatments.
Again, as usual everyone is different in their response to treatment.
My radiation team let me put skin cream on in the dressing room AFTER the treatment.
Somehow I liked to put the lotion/cream on right away........and repeated for at 3-4 times/day.
When I got home, I laid on the bed with chest exposed to air for about 1/2 hour........
read somewhere this helped. I listened to a guided imagery for a strong immune system or
relaxing, classical type music thinking positive thoughts like: my skin is healthy etc.
I had a mastectomy.
With lumpectomy, think it would be even more important for air to get at skin folds.
Bathing......very lukewarm water.
Towel pat dry very gently from day 1. Tried to never rub or even pat normal from Day 1.
Liked a men's cotton T shirt next to my skin. (large size, very loose fit)
If treated during chilly/cold season: if you have a satin top/pajama top put over the T shirt......
the satin feels good on the skin near the chest area.
Continue good Vitamin D levels important during radiation.
Activity/exercise as tolerated.
Healthy diet.
Adequate protein for cell repair.
Saw oncology nutritionist at center for diet review and recommendations.
If one does/believes in Affirmations.
Positive affirmations getting into bed. ( Was fortunate......I fall asleep quickly)
If you have any decreased range of motion of your shoulder, consider a few gentle
stretches in the changing room........I actually did a few gentle stretches/movements
in the treatment room walking to the table before I laid done.
I did not have my full range of motion back when I had radiation therapy.
I found it helpful to ask the radiation staff to tell when when the treatment was half
done (even though the total time of treatment is short).
If you can lie in the treatment position without any problem, this may not be necessary.
Needed to get a mind set for why I was doing radiation therapy.
I considered myself cured and healed after chemo and surgery.
Finally, settled on something like radiation was an insurance policy that I wanted.
(Obviously, also recommended by my treatment team and important to TNBC)
NOTE: Consider what affirmations you might want to say as radiation therapy is being given.
I said: Healing energy.
My treatment plan completely cures and heals me.
After radiation, saw this this phrase which I liked:
"See your treatment as gifts of golden light and healing energy"
If you are into affirmations, you can think of one that would be meaningful to you.....
and you can change if another phrase feels better as treatment continues.
Think the time during which radiation is being given is a very powerful time for the messages
one sends the body.
After radiation, some people noticed a decreased range of shoulder/arm motion. Sometimes
the decreased range of motion is not noticed until several months after radiation.
If this should occur, ask for a referral to a physical therapist who specializes in post breast
surgery PT. (Sometimes a "regular PT" can be too vigorous and not appreciate the
gentle treatment that is needed post breast surgery/radiation.)
With caring and positive thoughts,
Grateful for today............Judy
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Posted By: Virginger
Date Posted: Aug 02 2013 at 11:21pm
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THANK you so Much Judy~ A lot of information there...I'm copy/pasting so I'l have it ALL at my finger tips..I just got a relaxation/mediation CD and I'm gonna start listening to it to get in the correct mind frame. I had a lumpectomy and have been working 1/2 days since 3rd Chemo treatment. Range of motion is kind of important with my job, so I'll do the exercises for sure!
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Posted By: hopeful57
Date Posted: Aug 27 2013 at 8:30pm
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Hi, Everyone, I have a couple of questions, please. I will be done my chemo on September 10--total of 8 treatments, 4 AC dose dense and then 4 Taxol, dose dense, and a Neulasta shot after every treatment. I will now be calling a Radiation Oncologist to see when I start Radiation. On April 22, I had a lumpectomy--1.2 cm tumor, sentinel lymph node taken-no cancer at all, 8 mm clear margin around tumor, and I had a breast reduction at the same time. I went right into chemo and have done well-no delays and minimal side effects (except for mouth sores). What questions should I ask the Radiation Oncologist? Does anyone know if they do pinpoint radiation or whole breast radiation (the tumor was high in my left breast) and has anyone heard of a "thyroid shield" and should I ask for that? I just want to call but be prepared with questions. AND how does radiation compare to getting the chemo interms of fatigue? I mentioned taking a Vitamin D supplement yesterday to my Oncologist and she said that the RO would probably take me off all vitamins so I should not start taking this or anythine new until radiation is over. I would appreciate any help. Everyone here is always so supportive and positive. I hope to be able to impart similar information once I am done radiation. Thank you very much.
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Posted By: Charlene
Date Posted: Aug 27 2013 at 10:07pm
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I think you will find when you meet with the RO that he/she will make a recommendation specific to your particular situation, as far as whether you will have whole breast radiation or one of the newer treatments. I've heard of a thyroid shield from the Dr. Oz show, but as I recall, they are used at the dentist office. I believe I was told that I could continue taking one multi-vitamin during radiation, but that was all. I did experience some fatigue (I did whole breast radiation), but nothing close to the down days of chemo. What I remember from my first visit is the RO going over my case with me, making her determination as to how much and what kind of radiation treatment, and then scheduling me for the simulation. At the simulation they went over exactly what would happen, the procedures, how often I would meet with the doctor, etc. It's much easier than chemo! Best wishes! Charlene
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DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Posted By: Grateful for today
Date Posted: Aug 29 2013 at 11:50pm
Virginger,
Sending caring and good thoughts.......whether you are waiting to start radiation or have already
started.
Grateful for today.............Judy
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Hopeful 57,
Good to hear you are approaching your last chemo treatment.
For info and questions to consider asking your radiation oncologist, you might like to see the above
posts of 7/30/13 (Questions to consider asking) and 8/2/13 9:59pm (Radiation tips).
Of particular importance is ask about special breathing techniques for Left sided radiation ( see
7/30/13 above post.
The Radiation Oncologist determines which areas and amount of radiation for the treatment plan.
Just so you know.......you may like to ask which area(s) you will have radiated. You can ask the
radiation oncologist how the areas to be radiated were determined.
Examples: chest wall, axillary, tangential, supraclavicular, internal mammary.
Different areas are included in the plan depending if nodes and which ones are involved,
where tumor was located and other variables.
You can ask your radiation oncologist about current thinking about thyroid shield and radiation therapy.
There had been some discussion of thyroid shields and mammograms and dental exams after a Dr. Oz
program.
Question on thryoid shields from Johns Hopkins Ask the Expert website:
http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999812296" rel="nofollow - http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999812296
Most articles seem to be on thyroid shields and mammograms.....not radiation therapy.
The ACR and Society of Breast Imaging Statement on Radiation Received by the
Thyroid from Mammography
http://www.acr.org/~/media/ACR/Documents/PDF/QualitySafety/Resources/Breast%20Imaging/ThyroidStatement.pdf" rel="nofollow - http://www.acr.org/~/media/ACR/Documents/PDF/QualitySafety/Resources/Breast%20Imaging/ThyroidStatement.pdf
http://www.massgeneral.org/about/newsarticle.aspx?id=2720" rel="nofollow - http://www.massgeneral.org/about/newsarticle.aspx?id=2720
With caring and positive thoughts,
Grateful for today...............Judy
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Posted By: Virginger
Date Posted: Aug 30 2013 at 12:08pm
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meeting set with RO Sept 9th...thanks for the pointers
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Posted By: Virginger
Date Posted: Sep 18 2013 at 8:24pm
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had my first treatment today...getting a total of 6 1/2 weeks..have the creams and using them tonight...thanks again for all the advice....
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Virginia
Dx 1/17/2013, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, mets, ER-/PR-, HER2-
Surgery 02/21/2013 Lumpectomy (Left)
Chemotherapy 04/12/2013 Cytoxan, Taxotere
Radiation after chemo
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Posted By: Lillie
Date Posted: Sep 19 2013 at 1:53pm
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Dear Virginger,
So glad you are on the road, finally, with your radiation treatments. I pray the creams and ointments work well.
God Bless,
Lillie
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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
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