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anyone refuse radiation after lumpectomy

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Topic: anyone refuse radiation after lumpectomy
Posted By: Fats1976
Subject: anyone refuse radiation after lumpectomy
Date Posted: Mar 25 2013 at 1:43pm
hi all need advice, mom was diagnosed with tnbc stage 1, she had a lumpectomy, 1.8mm tumour, got good clear margins of 2cm all round, she's being doing cmf Chemo 12 infusions we have two left, she's tired, and side effects have just been getting worse with each infusion, she's now refusing radiation, says she want's to rather go the alternative route, once chemo is complete, anyone here refuse radiation?



Replies:
Posted By: beck
Date Posted: Mar 25 2013 at 2:09pm
IM 63 I HAD CMF CHEMO AND 33 RADATION TREATMENTS , READTION IS MUCH EASIER THEN CHEMO , I HAD REDNESS IN UNDER ARM AND BREAST WHICH HEALE PRETTY FAST, NO OTHER SIDE AFFECTS , FROM WHAT I HEAR AND READ RADATION IS A BIG HELP IN NOT GETTING REACURRANCES, THEY WONT START RADATION UNTIL SHE HAS A MONTHS REST OR SO , BUT I THINK IT IS IMPORTANT TO HAVE IT, BECK

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: Fats1976
Date Posted: Mar 25 2013 at 3:32pm
I was hoping for a good break between chemo and rads, so that she re-considers, I think she's just having a tough time right now, with the chemo, feeling terrible, with each infusion it's gotten more tough! What doesn't help is people have been telling her that Radiation is worse than chemo, and being her left breast going to damage her heart! And lots of other side effects, hopefully, when we meet the rad onc, he or she, will put her @ ease, thanks for your reply BECK..... God Bless


Posted By: beck
Date Posted: Mar 25 2013 at 5:08pm
NO NO RADATION IS NO WAY WORSE THEN CHEMO, I ALSO HAD PROBLEMS WITH cmf CHEMO , WAS IN HOSPITAL ONCE FROM BLOOD COUNTS TO LOW , EVEN THOUGH THEY SAY MOST DO VERY WELL ON IT, RADATION IVE DONE IN 2007 FOR BREAST CANCER ER POSTIVE, SO THIS WAS SECOND RADATION, I ALSO HAD IT ON LEFT SIDE, I WAS FINE RADATION IS EVEN LIKE CHEMO AT ALL , YOU DONT LOSE YOUR HAIR , IT DOSENT AFFECT YOU THE SAME WAY , JUST THE SORENESS , WHERE THEY RADATE , YOU THEY GIVE YOU CREAMS FOR THAT , AND YOU WILL HAVE NOTHING UNTIL THE LAST 2 WEEKS OR SO , NOTHING IN THE BEGINNING EASC SESSION TAKES ABOUT 10 MIN.    BECK

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: beck
Date Posted: Mar 25 2013 at 6:31pm
I WONDER IF THOSE THAT TOLD YOU RADATION WAS WORSE , HAD OR KNOW SOMEONE WHO HAD IT TO THEIR BREAST , BECAUSE FROM WHAT IVE BEEN TOLD , WHEN ITS YOUR BREAST , YOU DONT GET AS BAD A SIDE EFFECT , THEN IF IT WOULD BE A MAJOR ORGAN OR YOUR BRAIN

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: arabella
Date Posted: Mar 25 2013 at 10:05pm
Fats 1976....So sorry your Mom is having a hard time with chemo and her spirits seem to be wagging.

Interesting that you write about not doing radiation.....as I'm starting my radiation tomorrow....my very first treatment.  I am actually looking forward to it.  Can't believe I'm saying that, but as I believe it is in my best interest, I want to get it started and be finished with it.  

It is my understanding that you definitely need radiation in breast where lumpectomy was as the statistics are very high on a recurrence there without radiation (something like 30-40% I think). Radiation does kill cancer cells.  The newer radiation machines are much better than the older ones.  Fortunately, I'm going to a place that has all this "pinpoint" technology.  Mine is on my left (heart) side as well.  I was concerned about this too, but feel much better after talking with Radiation Oncologist and I believe that it is now much safer especially with these new latest technology machines.

My medical oncologist told me that you have a year from surgery to begin radiation.  Like Beck said, I think they will give your Mom some time after chemo to rest  a bit before radiation would begin.

Please know that I am new to all this and am learning as I go right now, but I would encourage her to consider having radiation......at the very least to speak with radiation oncologist before your Mom refuses.

Wishing you and your Mom the very best.

Wishing you both peace,
Kaye


-------------
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy


Posted By: krisa
Date Posted: Mar 25 2013 at 10:43pm
There have been studies that show radiation should begin a month after chemo is completed.
Radiation kills any cancer cells lurking in the area. A radiation field usually covers more area than where the tumor was located.
Nothing is easy nor guaranteed in much of what we do in our treatment.
Take care.


Posted By: MsBliss
Date Posted: Mar 26 2013 at 2:21pm
I often say I am a nation of one.  I opted out of both chemo and rads.  I just had my four year anniversary.  That being said, my breast surgeon and second opinion surgeon were FURIOUS with me for skipping it all, esp rads.  They felt it was necessary to "sterilize" the field because statistically, a local recurrence is more likely to spread to the nodes and other areas.  I was definitely rolling the dice.  I would not have taken such a chance had my cancer not had some favorable features.

If I was going to skip all the recommended therapies, I had to make an effort to do other evidence based supportive therapies.  It wasn't easy nor cheap.  You have to know your specific histopathology, which means extra pathology studies, and you have to know what you are doing.  Even with that, it is all very "experimental".  I used specific supplements which were pharmaceutical grade, specific topicals, and a few prescription meds with the guidance of a specialist in integrative oncology.  NONE of it is covered by insurance.  Skipping radiation isn't simply a matter of going to the vitamin store and finding what looks like an alternative substitute.

So yes, some of us do skip rads, and even chemo.  But it is rarely done.  If you don't know what you are doing, it may not be worth it.


-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions


Posted By: Lillie
Date Posted: Mar 26 2013 at 2:39pm
Dear Fats 1976,
 
I know you mother is growing weary of the chemo and we all understand. 
 
I wanted to say that I did not have radiation.  But, I had a mastectomy and participated in a clinical trial.  I had ACT plus Gemzar, dose dense.  I am an almost 7 year survivor.  I was told that if I had a lumpectomy, radiation would have been required.
 
I wish your mom the best of luck.  I do believe radiation is in order, since she had a lumpectomy, but that is just my opinion.
 
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: mindy555
Date Posted: Apr 07 2013 at 6:26pm
Hoping by now your Mom understands the importance of radiation.  I had a BMX, yet wouldn't have hesitated to go on to adjuvant radiation, as tired of treatment as I was.  Although I can understand your Mom's feelings being zapped so hard by chemo then jumping into yet more treatment.. I'm sure it was overwhelming to even think about.   But rads are totally different as already stated and extremely important to kill off the bad guy cells. 

It took enough opinions against rads (risk/benefits)  to make me relax with NOT having radiotherapy.  With TN you need to be aggressive as possible upfront... plus the SE are a cake walk compared to chemo- from everything I've read and heard.

xxx Mindy


-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012


Posted By: beck
Date Posted: Apr 09 2013 at 7:51pm
I KNOW FIRST HAND HOW YOUR MOM FEELS , AS I DID THE CMF CHEMO , WHEN THEY TOLD ME I NEED 6 TRATMENTS, I WAS LIKE OH I CAN DO THIS, LITTLE DID I KNOW 2 TREATMENT ARE KNOW AS ONE, YOU GET IT IN HALF TREATMENTS, SO YOU REALLY DO 12 TREATMENTS YOU DO 2 IN A ROLL , THEN 2 WEEK BREAK AND SO ON, SO BEFORE YOU ARE DONE YOU ARE WORN OUT, AND FOR ME IT WASNT AN EASYCHEMO,.. BUT I DID DO RADATION.. IT WAS MUCH EASIER AND WANTED TO GIVE IT MY ALL, SO I HOPE YOUR MOM CHANGES HER MIND BECK

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: CJWatson
Date Posted: Apr 18 2013 at 3:23pm
I do plan radiation having finished my chemo and lumpectomy, just to catch any stragglers which may have been missed.  Being 64, I know how much chemo (A/C x 4) can take out of you.  For myself, I decided that I could face the next treatment step far better if I were rested and calm.  I waited over three months before going on to surgery after my chemo ended around Christmas.  Had the lumpectomy and a SLB and all the pathology was negative.  I plan to wait a few months to heal the incisions (and heal my emotions) before radiation.
 
Maybe give mom a break and let her rest, feel human again.  A month or two probably will not make any difference and is certainly better than an outright 'never' refusal.
 


Posted By: mindy555
Date Posted: Apr 19 2013 at 7:19pm
My own theory based on bits and pieces I'm reading is-  at some point rads will be recommended for ALL hormone negative, HER-2 negative patients who are grade 3 and have true invasive cancer--- regardless of lumpectomy or mastectomy, LVI, KI-67 or node status.  It appears this is the case in some countries now due to the aggressive nature of the beast. 

While I hope your Mom gained strength and is ready to finish all treatment, I'm also wishing you & your Mom peace with whatever she decides. 


-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012


Posted By: Fats1976
Date Posted: Apr 25 2013 at 3:53pm
hey all you wonderful ladies, Thanks so much for your input! Mom did her last chemo infusion on the 9th of April, @ that appointment oncologist gave us referal papers of tests and last blood results, and business card of radiation oncologist! Onc assured her that if she just completed 6 months of Chemo, that she'll manage radiation easily, He said she can have a small break, he wants to see her 23rd of July, so by this time she must be done with radiation, so I'm guessing we'll have to start rads early June the latest, so glad she's moving onto rads, we'll be meeting radiation oncologist early May, my question now is what will procedure be, will there be more tests before radiation begins? Do they do bloods again?  Thanks so much Fats! xxxxx


Posted By: denise07
Date Posted: Apr 25 2013 at 11:28pm
Fats 1976,
Your mom is probaly totally exhaused from her chemo treatments she needs a little break so her body can recover. I am glad to read that she is having radiation it is very important to hit this disease with everything we can as far as radiation that was no big deal for me just a bit tiried towards the end of treatment no big deal for me and i did have labs done once a week during treatment your mom is half way there she will do fine and it is important to eat healthy during treatments.
Wishing the best for your mom...
Denise


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DX Idc 10/07,st2,gr3,2/6 lymphnodes


Posted By: arabella
Date Posted: Apr 26 2013 at 7:58am
Fats1976....I have two more rads to go and have had no problems.  I am driving three hours round trip for these rads every day (except weekends) and I will actually miss doing this I think.  I've gotten so use to seeing all the great folks at the treatment center and other patients.  It's going to be sad for me to say good-by.

No  blood test prior to rad was done on me.  My rad onc had all the paperwork on what I  had been thru with chemo before and they did weigh me and she examined me, but I don't recall any other tests being given.  The rad onc and the rad nurse spent a lot of time with me explaining and talking on the first day I met with radiation onc.   CT like scans were taking in the radiation room and all sorts of measurements made with me on the table......this took a while....probably 45 mins. or so.  They marked up my breast/chest area with paint markers.  My rad onc does not tattoo.   They tried to put me face down on the board but my incision where lump was was too high for it to be properly radiated so I had to take the radiation on my back.  It's better if you can be face down which lets the radiation miss your organs better, but lots of people have to be on their backs.....no problem.   The actual radiation time is very short.....just seconds.   The place I go to is spa like.  I have a beautiful area ......wooden lockers where I have a key to mine (to store your purse and clothes when you change into robe)  and I have a hot pink waffle type robe I put on every morning.  I go and sit in a nice area and chat with other patients for only a moment before the therapists call me for my radiation.  I'm in and out very quickly.  Every Monday after my rad session, I meet with  my rad onc and she examines me and we chat.

I've done well....no burns.....just a bit of a rash here at the very end.  I have used Miaderm (given by them) since my first treatment.  I also, with rad onc's permission, have used an aloe spray.

Hope this helps.....best of luck to your Mom and to you.  

Kaye


-------------
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy


Posted By: mindy555
Date Posted: Apr 26 2013 at 3:40pm
Great news Fats!  I'm sure you're relieved she's moving forward!

xxx


-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012


Posted By: beck
Date Posted: Apr 26 2013 at 5:09pm
fATS I HAD THE ROUTINE BLOOD WORK I GET , BUT NOTHING ELSE AT THE END OF THE WEEK EACH WEEK I WOULD SEE RADOLOGEST, ALL HE DID WAS TALK TO ME AND CHECK MY SKIN, SHE WILL SEE NOT MUCH AT ALL IT SHOWS UP MORE IN THE LAST 2 WEEKS THEY WILL GIVE YOU CRAMS AND ADVICE BECK

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: beck
Date Posted: Apr 26 2013 at 5:16pm
I WANTED TO ADD MY SKIN GOT LIKE A BAD SUNBURN AT THE END , LOOK FOR SOFT COTTON T SHIRTS THEY HELP ALOT NO ROUGH CLOTHING . THERE WERE TIMES I GOT SORE JUST BELOW BREAST WHERE SKIN TOUCHES SKIN I ROLL UP A PIECE OF SOFT CLOTH AND PUT IT THERE , THIS WAS THE ADVICE THEY GAVE ME , ONCE RADATION IS DONE , IT HEALS LIKE IN A WEEK , BUT WILL REMAN A DARKER COLOR FOR A LONG TIME NOT TO WORRY   BECK

-------------
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.


Posted By: arabella
Date Posted: Apr 27 2013 at 1:14am
Beck, I too after a few treatments wore a men's white cotton  undershirt....washed it several times so it would be very soft.  I left my bra off.  I just put my other clothes on top of this.  Fats, if it's not too hot where you are, the zippered sweatshirt type jackets work great over tee shirt without bra....easy on/easy off.   

-------------
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy


Posted By: MLindaG
Date Posted: Apr 28 2013 at 12:38pm
FATS So glad your Mom decided to do the RADS.  I am on my last week! 5 treatments to go!!  It has been much easier than I thought it would be........I only had to get blood work once during the 6 weeks of treatment and since I still have my port - it was no big deal.  I do see the onc every Monday and he checks my skin.  I have very fair - pinky kind of skin and I burn in the sun in 15 min.!  I was very worried about this and really have done well.  I did use the cream they gave me three times a day.  I had some red streaks after 4 weeks in my neck area (they are doing my lymph up by my neck) but it has only blistered yesterday and since I'm into the boosts the last week it is not going to stop my progression.  I know all the nurses are surprised I have not have more skin issues.  I too am fairly red underneath my bra area.  I just kept it dry with cornstarch and its done fairly well considering.  Don't get me wrong.......I am dark red just no open blistered skin! (except the one small area near my neck.)  I finished my Chemo 12/20/12, Operation was 2/13/13, Started Rads 3/25/13. Good luck to your Mom. 

-------------
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.


Posted By: Grateful for today
Date Posted: May 18 2013 at 3:25pm
Fats1976,

Joining those who are glad to hear your Mom will have radiation therapy.
Just a thought........do check with the radiation oncologist on the "optimal" time within which
to start radiation. Realize it took a lot for your Mom to agree to radiation.   At the same time,
in order to get the maximum benefit of the radiation, one would want to try to start within the
optimal time recommended. This optimal time within which to start can be obtained from the
radiation oncologist who knows all the particulars of your Mom's situation.
Where I had my radiation, I did not have any blood tests. (Depending on the type of cancer one is
receiving radiation for, the need for blood tests during radiation can vary. Also, different centers
may have different protocols for breast cancer radiation re: blood work.)
Prior to the actual radiation treatments, there is a planning/mapping session. Arbella described this
on the above April 26 post.

I had posted some Radiation Tips on a prior thread and will re-post them below in case there is any
thing there that might be helpful for you and your Mom.

Your Mother is very fortunate to have such a caring daughter and advocate. Please remember that
it is very important for the caregiver to take care of the caregiver.   There was a prior thread for
caregivers......you may find find something helpful on that thread:
http://forum.tnbcfoundation.org/support-infospouse-main-support-person_topic9558_page2.html" rel="nofollow - http://forum.tnbcfoundation.org/support-infospouse-main-support-person_topic9558_page2.html
(See the first post and Jan 3/13 posts in particular)

Not sure if your Mom's tumor was on the right or left side.
If it was on the LEFT side, be sure to ask about the "special breathing techniques" to decrease
risk of heart/lung side effects from radiation when given on the left chest area.


With caring and positive thoughts to you and your Mom,
Grateful for today.............Judy

________________________________________________________________________


CJWatson,


Saw your post on May 9 on another thread and thought I would post here on the radiation related
thread you had posted on.   (It was fine that you posted where you did. Since you had also posted
on this thread, opted to reply here.)

Originally posted by CJWatson CJWatson wrote:

...........Went to see my new radiation oncologist this week and came out of our meeting very optimistic.† I have really lucked-out with this top-notch doctor.† I will be starting rads as soon as they can get rid of the seroma left over from the surgery.†


Thrilled to hear about your "optimistic" meeting and your "top-notch" doctor.
I had posted some Radiation Tips on a prior thread and will re-post them below in case there is any
thing there that might be helpful for you when you start radiation.


With caring and positive thoughts,
Grateful for today...............Judy


_____________________________________________________________________

RADIATION TIPS.
Pick and choose what sounds helpful.   You know yourself best.
If below is different from instructions from your Radiation Center, follow your Center's/physician
instructions/tips until you can discuss with your physician.


IMPORTANT: If you are to receive radiation on the left side, before you begin the actual radiation
treatments, discuss with the radiation oncologist the "breathing techniques' to help decrease risk
of heart/lung side effects from radiation.

If you will have TATTOO MARKS::
Some center use tattoos for markings for treatments, other places use some kind of non-permanent marker.
This is what I learned from my 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 about tattoos.
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 treatment ......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 SKIN MARKERS:
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 and a few others.
     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 aloe vera gel 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.
Skin moisturizing of radiated areas to continue daily/always after treatment is completed.
     
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 3-4 times/day.

When home, lay on the bed with chest exposed to air for about 1/2 hour........
read somewhere this helped. Listen to a guided imagery for a strong immune system or
relaxing, classical type music thinking positive thoughts like: my skin is healthy etc.
If one had a 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)
On chilly days and when at home, would put a satin pajama top over the T shirt......
the satin felt 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.

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 down.

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)

If one is not into affirmation, skip the following on affirmations.
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 your 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.)

There are also Radiation Tips on the thread on TNBC News/Resources/TIps forum:
http://forum.tnbcfoundation.org/the-radiation-tips_topic3102.html" rel="nofollow - http://forum.tnbcfoundation.org/the-radiation-tips_topic3102.html

If any questions on the above, please post.


With caring and positive thoughts,
Grateful for today..........Judy







Posted By: Kellyless
Date Posted: May 19 2013 at 10:28am
Every one of us here that had chemo feel your mom's pain - and exhaustionDead  Compared to chemo radiation is a walk in the park :) the worst thing about it was the daily driving back and forth, but the radiation department at my cancer hospital was INCREDIBLE, the nicest, most efficient, knowledgeable, accommodating - I could go on and on and on raving about the care I had while receiving my radiation treatments.   You get a time of day scheduled and come each and every week day.  I and many women I know became friends with those other rads patients with daily appts. around the same time as us. All of us had some scary diagnosis or another, most of us were at the end of a lot of awful, difficult medical care.  It was a pretty joyful group, for a bunch of "sick people" Tongue Best wishes to you and your mom, she's almost finished, woohoo!!


-------------
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!


Posted By: Fats1976
Date Posted: May 28 2013 at 2:18pm
Hi All, Hope this message finds you all well, pleased to inform all
Of you that my mom starts her radiation tomorrow! She's so ready to get this going, and fortunetly really likes the radiation Oncologist, and all the staff @ the oncology centre! So here's t the next 7 weeks, may they fly by, with minimal side effects! Would like to thank all of you for the advice and replies, you all Angels! will keep you all updated as we go along, also for those that are also starting this journey of Radiation! God Bless Fats xxxxxx


Posted By: Fats1976
Date Posted: May 29 2013 at 1:28pm
Hi Ladies, so took my mom for her first radiation this morning @ 11:00 am South African Time. I've just chatted to her on the phone, It's now 7:25pm and she said she already has slight sunburn, and her breast is slighly swollen! Radiation Onc, told us that side effects should occur in the last weeks? We are going again tomorrow, just wanted to see if any of you had similar experience! Thanks Fats


Posted By: TriplePositiveGirl
Date Posted: May 29 2013 at 4:42pm
Hi Fats!

One thing to make sure of before going to a radiation appointment - the breast area should be clean and dry - do NOT use moisturizers BEFORE the appointment, which can lead to increased burning. She can apply all the creams in the world AFTER the radiation appointment. Just wanted to make sure this was told to you and your Mom.
Best,
Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: MLindaG
Date Posted: May 29 2013 at 9:02pm
I just finished my Rads last Weds. I got radiation in three areas.......breast, neck and underarm area.   I have extremely sensitive skin and it is what I call pinky white skin.......I was extremely worried I was going to have BIG issues!  I did not have any issues for the first week.........at the end of the second week I had a red mark across my neck area and my breast was rather pink and under my arm area was also   pink........The nurse was surprised that I was doing so good,  Third week..........everything a bit redder......breast was still just pink..............Fourth week..........A second red mark appears on my neck.........First red mark is very very deep red but still doing OK.........breast a little bit pinker...........under arm dark red...........Fifth week..........2 areas under my breast that are dark red/very sore..........all areas are deep dark red  but I am now done with all my regular radiation.........after this all I have left are the boosts........Go in on the Monday of my boost........I realized over the weekend that I have two big blistered areas on my neck......two under the breast by the bra area.........one blister in my arm pit and another area on the side under my arm pit.........I also have one on the underside of the breast...........as they set me up for my boost and work to get everything set the Radiologist comes in and says the blister underside of my breast is open and we can't do the Radiation today......Soooooo I saw the Dr. they gave me a prescription for a med to help dry up the blisters..........well, I'm allergic to sulfa and this med has sulfa so I was unable to use it.........so I had to get a powder-mix with water and use 4 x 4 gauze soak them in the solution and put them on the blisters.......I went back in 2 days.........no could not do the Rads..........wanted me to wait until after the weekend..........no couldn't do it.........ended up having a 2 week stoppage and rest........which wasn't a bad thing all the blisters healed and I felt much better.  The one under the breast was the one in the boost area and it was the most difficult to heal.  Finally did it and got the remaining 8 boosts with no trouble.  I never noticed my breast swelling.  I did have breast pain from time to time.  Good luck to your Mom........maybe they will reduce the dose and do it longer after they see her tomorrow...........I was supposed to get 5 boosts and they changed it to 8 so they could reduce the dose.  I would go a little early and have them check it over and see if it is OK.  How many treatments was your Mom supposed to get? 

-------------
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.


Posted By: Fats1976
Date Posted: May 31 2013 at 2:34pm
To each and everyone of you , no words to say how grateful I am to all of you for replies, advice and support! Means so so much! So mom has had 3 treatments already, She'll go again on Monday, She had slight sunburn on her first one, but it seems to have settled, and not much change in with the last two! Was just so worried, But after reading your post MLinda, felt like ok this is normal! Mom will be getting 28 treatments, with 3-5 boosts @ then End Oncologist will still decide! Once again Thanks to you all, have a blessed weekend! God Bless! Fats


Posted By: Linda2907
Date Posted: Jun 05 2013 at 1:56pm
I had a partial mastectomy (lumpectomy) and I refused chemo as well. I am going to have radiation, starting next week. 16 standard dose rads + 4 intense ones. I did not negotiate the term; it was the decision of the radiation oncologist after reviewing my CT scan.
 
Like you, the surgeon and head chemo oncologist were shocked at my no-chemo decision. The dept head seemed to take it personally, but no disrespect was intended. And, anyway, it's all about me!
 
I was diagnoes with TNBC, I had no margins, no nodes, Stage 1a, grade 3 (but they almost always call it that). The 1st oncologist told me that chemo was a given and that I had no choice (YES, I do!!!). 16 weeks of treatment! Then he said that chemo (for me, at least) was a coin flip. It might help, it might not, they don't really know. So I decided no.
 
I know my decision to refuse the "standard of care" may result in it coming back, but it's 50/50 that it will come back anyway. I'm impressed that you are 4 years well. I can't say that I really know what I'm doing, but I know what is best for my emotional well being, and for now, that's enough.
 
I have no issues or arguments with anyone who goes full traditional on their treatment plan, but chemo is just too aggressive for me. And, for the record, it's not about losing my hair.
 
 


Posted By: TriplePositiveGirl
Date Posted: Jun 05 2013 at 2:26pm
Hi Linda,

I respect your decision not to have chemo. It seems with a staging of 1a, you are well within reason to skip chemo. There is no way a doctor can tell you that chemo is going to ensure no recurrence, so if I was in your shoes, I may have chosen the same exact thing. Chemo has its own drawbacks, and certainly many women who have had chemo have had recurrences, so there is NO guarantee with any of this. I elected to have chemo (my situation is different than yours), but I have to admit that I did think about not having chemo.
Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Linda2907
Date Posted: Jun 05 2013 at 5:55pm
Hi Lisa, LOVE your forum name! Thanks for the support. I understand your decision, too. I am in no position to know what anyone should do, so I support everyone's individual choices.

For myself, I'm a skeptic. Most test results suggest that chemo is the solution for TN, because TN responds so well to it. I wonder if it responds so well because some TN cases didn't need it. The oncologists told me that TN is always aggressive which means it must always have the most aggressive treatment - probably not true.

I found my lump before Christmas - maybe early Nov. It felt much like a cyst I had many years ago, so I never believed at all that this was going to be a problem. I told my GP at my annual physical - Jan 21 - and he thought it felt like a cyst, too. Started with mammo in early Feb - then the horse race began.

My point is that from the time I found the lump until the partial mastectomy (5-6 months), I felt no change in size. In fact, the official reports from the breast ultrasound through to the surgery (about 2 months), showed no change whatsoever. So, mine was probably not all that aggressive after all.

I hope for the best outcome. I hope I'm already cancer-free. I think cutting the cancer out and then slamming the area with radiation are the best bets. Beyond that, I'm changing my diet for the better. And, the rest is up to fate.


Posted By: TriplePositiveGirl
Date Posted: Jun 05 2013 at 6:29pm
Linda,

You are right about FATE. I have made some changes to my lifestyle habits, but I was already in decent physical shape before my diagnosis, so I am not sure what more I can do to prevent recurrence. I do take more supplements than I did prior diagnosis, especially vitamin D3. 

It certainly would be nice to know what causes this type of cancer, but I'm afraid that will never be. I am now approaching 3 years since my surgery date, and so far so good. I hate worrying about it, but the worry never truly goes away. I wish you all the best and good health and NED forever!
Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Linda2907
Date Posted: Jun 06 2013 at 8:45am
Thank you so much for your good wishes.
 
Frankly, I'm in horrible physical shape so there's lots I can do there. If I'm being very honest with myself, I'm also in horrible mental shape. I get angry too fast and stay angry too long. I put everybody else, including my employees & employer, first. I don't do exercise, I eat what's on hand. I don't take the time to get enough sleep. I have spent too many years volunteering to stand at the back of the line. I've put myself last in my own life.
 
Bottom line, I did not plan for a long, healthy, successful life. I mean human success, not career success. I have career success because I put in the time and do a little on that objective every single day.
 
I should not have the slightest surprise that my long-ignored body failed to fight back. Why should it have? Now I have to redirect my focus to myself (in a good way) and get truly healthy - body, mind and soul.
 
The challenge before me is both terrifying and exhilarating. I hope I have the courage to make all those changes, and the strength to stand up to all the people who'd like things to stay just the way they have always been.


Posted By: Linda2907
Date Posted: Jun 06 2013 at 9:08am
It certainly would be nice to know what causes this type of cancer, but I'm afraid that will never be.
It WILL be. The triple negative diagnoses is a temporary identification. They will learn more, it may take a while, but they'll do it. They'll chip away at it, until they know what it is. It may turn out to be 3 or 10 different cancers - each with real names and specialized treatments.
 
I said to the 1st chemo oncologist: imagine I've given you a paper and a pencil. Now, draw an animal. Theses are the parameters: it doesn't fly like a bird, it's not as big as an elephant, it doesn't have a bushy tail like a squirrel. Now, GO.
 
He laughed, then I said OK. Let's give you something we do know: it's a mammal. I asked him, will you draw a woman? a man? a chimp? could it be dolphin? He nodded and agreed that they know almost nothing about this disease except what it is not.
 
It won't be soon enough to do you or me any good, but they will find out what it is and not just identify it by what it is not.
 
I hope you are truly cured, not just 'no evidence of disease'. Which is another 'identification by what it is not'. I just know lawyers must be involved in naming these things.
 


Posted By: TriplePositiveGirl
Date Posted: Jun 06 2013 at 12:50pm
Hi Linda!

Your posts did make me smile. I love the lawyer comment. No Evidence of Disease does sound like a legal term rather than "hey you're cured!" would. Having cancer did cause me to re-evaluate my life. I too spent much time working, and was over stressed. I believe stress plays a big part in our overall mental and physical well-being. I definitely have made some changes in my routine, and I have tried hard not to allow stress into my life (or people who cause stress!). Of course it is impossible to completely avoid, but I have found ways to "let it go", which was hard in the past. I guess there is always something good that can come from something horrible - maybe having cancer gives us that perspective we need.
Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Fats1976
Date Posted: Jun 06 2013 at 1:33pm
So well said Lisa, as you all may or may not know, I joined this forumn because of my mothers diagnoses of idc tnbc, she was staged stage 1, everything happened so quickly, next thing all with in 1 month (Mammogram, ultrasound, biopsy, then sentinel node biopsy, lumpectomy, bone scans, heart tests, xrays to chest, ultrasound to abdominal area) she was doing chemo, she did six months cmf, which was hard, only she knows, her hair didn't fall out, but still had lots of other side effects! And is still recovering after 2 months, she's now had a 7 treatments of her 26 treatments, My mom has always been a very healthy, no sugar, no crisps, no fizzy drinks, no alchohol, she weighed 52Kg's.... No history, of breast cancer in the family! I think the only thing is no excercise??? Last year was a very stressful year for the family (one of the worst ever), and my gut tells me that her's was very much stress related! I often wonder she should she have done chemo and rads, at her stage, but everything happened so quickly and with fear of this unkown tnbs, we trusted the doctors, so if we have GOD forbid we evere have a recurrence, we'll know that it isn't because we didn't everything we could! Would just like to add t what Lisa said, Something Good does come from all this, of all the ladies that I have met and spoken to that have beaten this disease are "high" on life, appreciate everyday, stop to smell the roses and Thank GOD everyday for another beautiful day! And Don't sweat about the small stuff! God Bless you all,on this life changing Journey! Love n Light Fats


Posted By: TriplePositiveGirl
Date Posted: Jun 06 2013 at 1:47pm
Hi Fats!

I have followed your posts about your mom's journey....she is lucky to have you by her side! Sounds like she is almost at the end of her journey, so I'm sure she is anxious to be done with treatment. I often feel like I have been "reborn" and I need to make sure to take good care of myself going forward. I so wish the best for your mom (and you!) and hope for "hey I'm cured!" for your mom soon!
xoxo
Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Fats1976
Date Posted: Jun 06 2013 at 2:09pm
Lisa, Thank you, anything for my mom, she so deserves it! She was such a great mom, and did the best she could always for the FOUR of us, and on her own, as we lost our dad in 1992, She always put us first! It's her turn now, for us to look after her! And Yes I prefer "hey I'm cured" rather than NED, does sound like a legal term, Linda made me laugh with her posts today! I'm so hooked on this forumn! It's the Best thing ever! xxxxxxxx


Posted By: sarah66
Date Posted: Jun 17 2013 at 12:59am
no, tnbc  is very aggressive.  i had  chemo  for  7 months for left breast  tnbc. then went  had  7 cm lump removed. then  had one month  later had left breast margin were lump was removed  radiation  everyday m-f. for  3 weeks. was cancer free then 6 mos. then last may had headaces and mri show cancer to the brain two small areas, now after to gamma knife tx. iam still here but its hard to tx  brain cancer, i don't have any cancer any where else. radiation is not as hard on you as chemo. at lease it wasn't for me. but tnbc is so aggressive i fought with all i could. the dr's believe my brain cancer is not related to my breast cancer. take  care sarah. hope iam helping.
 
 


Posted By: Fats1976
Date Posted: Jun 17 2013 at 2:44am
Hi Sarah, Thanks for you info, sorry about what you've been going through! But I see that you have a good fighting spirit! Keep @ it, My mom has aleady done 13 treatments of Radiation, she's doing ok so far, her breast is starting to look a little "tanned" and is just a little tired, but I've heard her tell people that it's nothing compared to chemo, here in South Africa the protocol is no bathing, just a quick wet and wipe with aqueous cream on breast receiving radiation, pat dry, no deo's @ all, she must use Maizena on Radiation site, and underarms to absorb sweat! So Glad she's gone through with it! So how and what are they doing aout your BRAIN cancer? All the best to you GOD BLESS, Fats


Posted By: Linda2907
Date Posted: Jul 05 2013 at 4:42pm
I finished my radiation treatments Wednesday (July 3). Sigh. I am sore. Underarm is very dark red, especially where the incision was to remove the lymph nodes.

Under the breast is quite red, as the area at the lumpectomy scar. My nipple is about 3x the size of the unaffected breast and also bright red. If Rudolph can't make this Dec 24 ... OK, really tasteless joke.

I'm having quite a bit of pain, but it doesn't seem like the pain I was told to expect. No stabbing pain, just aching in the three main places I mentioned. More like a muscle pain than a knife. Not really like a sunburn at all. And, yowsa, sometimes it just gets so itchy I could crawl out of my skin. Good thing that neither the pain nor the itching lasts long, just suddenly shows up big time, stays a minute or three, then leaves.

I frequently wake up at night because of the pain; I have to be very careful how I sleep - on the back seems best.

They wanted me to have 16 treatments + 4 boosts. I was so sore and swollen by #12, I said I wasn't going to have the boosts. Well, RO sneaked 2 in by replacing #'s 15 & 16 with boost sessions. OW! OW! OW!

My RO explained that I was having fewer sessions, but with the same level of radiation that the standard 25 - 30 would have given me. About Ĺ the dates, about 2X the dose per session.

I originally discussed with my surgeon the option of having a mastectomy, and he said the outcomes from lumpectomy + radiation are the same as a mastectomy, so he didn't want to do it. Yeah, well maybe so, but if I had had the mastectomy in April, I'd have been done healing by now. I really need to start listening to myself. I know some (most?) women really want to keep their breast, but I couldn't care less.

Linda


Posted By: MLindaG
Date Posted: Jul 05 2013 at 5:09pm
Linda, Congrat's on completing the rads!!!  I remember walking out of the hospital that day and feeling like a weight had been lifted off of me~  I could not stop smiling!   I finished mine the end of May and I'm still wearing a bra at night....... I did get quite a few stabbing pains which I think was my nerve endings in my breast  started to fire back up as underneath my arm pit I'm actually starting to feel a little bit.   

-------------
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.


Posted By: Linda2907
Date Posted: Jul 06 2013 at 12:52pm
Thank you, and congratulations to you, too!

I can't imagine putting on a bra right now. Lucky for me, I live with my husband, cats & dogs and none of them are complaining about my clothing choices. Other than them, I'm in seclusion. Phone calls & emails only.

During my treatment, I wore a light sports bra. I bought a few at Walmart pretty cheap. I also bought them a size larger than I would normally wear so I wouldn't put too much pressure on the girls.

Turns out that was a good decision given the swelling on the target breast. And, easier to get on and off.

Hope you heal quickly and completely and forever.


Posted By: MLindaG
Date Posted: Jul 06 2013 at 3:11pm
I think what helped me is my two weeks of no radiation after the 5th week..........due to many large blisters.........once they were healed the boosts were not bad at all - very targeted - I did not get any more blisters and the areas that were so sore after another week and a half of healing were all good at that point!  I did not wear a bra for a couple of weeks when all he$$ broke loose with all the blisters!!  Thank goodness for cuddle duds!  Soft and comfy........I too had bought some bras in a bigger size and used those through much of the rads.  I was pretty good until week 5.........So it ended up about 3 weeks of yuk.........in the big picture.......only a blip!   I had my first chemo last July 9th!!!  Wishing you continued healing!!! 

-------------
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.


Posted By: Tennislas
Date Posted: Jul 07 2013 at 11:19pm
I am looking back on these treatments, and I see that things have changed.  I had mammosite radiation therapy, and I don't even think it is used anymore.  I need to check into that.  My experience with the treatments weren't bad, but I still don't understand why radiation is needed at all with clear margins or after a complete mastectomy if there weren't any problems seen in the lymph nodes.


Posted By: Lillie
Date Posted: Jul 08 2013 at 9:56am
Dear Tennislas,
I did not have radiation.
I had a left mastectomy and 1 lymph node had miniscule involvement. 
I did a clinical trial Dose Dense A/C times 4 and Dose Dense Taxol/Gemzar times 4.
The protocol did not call for radiation since I had a mastectomy.
 
It is the call of the oncologist some times as whether radiation is used. 
 
I am a 7 year survivor, so all I can say is I believe 'no radiation' made no difference in my survival.  I'm sure this is not true in so many situations; so I'm just sharing my experience.
 
Love and 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: Fats1976
Date Posted: Jul 08 2013 at 10:47am
Hi Ladies, hope you are all well, so I originally started this thread, just want to thank all of you for the effort to adding to my question, you all gave such good advice, that I was able to pass onto mom, today she completed her 28th treatment, and from tomorrow starts her boosts! She'll do 7, so next Wednesday, We'll be DONE!!! She Can't wait! She's slightly red, peeling under her arm, has quite a bit of stabbing pains and feels like her breast is roasting! But she's managing, I've been told the boosts are targeted @ tumour site only! So the worst is over???? do you all agree? @ Tennislas don't know when you were diagnosed, but things have definetly changed! They always changing! My best friend was diagnosed 10 years ago, and she said Chemo felt like she was so close to "death" She lived in her bathroom! And she lost so much weight! My mom now 10 years later, vomited once during her six months of chemo, and Gained 12 pounds during treatment! this all because of medication that is now given to you, with Chemo... my mom also had only one node removed because of the "sentinel node biopsy" which they remove first node closest to tumour, if that comes back negative, they don't remove any more, my best friend 10 years ago had most of her lymph nodes removed, they all came back negative, but left her with Lymphodema, as I understand My mom even though she was only stage 1, and got clear margins, had to do chemo because of it being tnbc, oncologist said all it takes is one little cell, that wasn't visible even under pathologists microscope, to have a recurrence, the radiation was for same reason, and because she opted for a lumpectomy!  It was our "insurance" policy to try and prevent any local recurrences! Thanks once again to all of you, our jouney is hopefully, God willing coming to an end, this sight has been my best friend my bible! Couldn't have done this with all the advice, that always gave us peace of mind! God Bless you all! Love Fats

-------------
Mom Dx 9/12
Stage 1c No Nodes involved.
Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED.



Posted By: TriplePositiveGirl
Date Posted: Jul 08 2013 at 11:52am
Congrats to your Mom Fats!

I remember the last day of radiation very well. Feels like such a weight is lifted off your shoulders. I hope she never has to travel this road again!

Just remember, the road to recovery takes time; she will be healing for the next several months and may experience fantom pains, etc, which can make the mind think bad things...lol. This is normal.

I wish the best for her and you for a cancer free future...

Lisa


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: ctlindah
Date Posted: Jul 10 2013 at 3:26pm
Hi Linda,
 
I finished my radiation the end of May and it sounds like you have many of the same symptoms I did.  Sometimes it was really hard not to give a good scratch in public!  Bet you won't be able to help Rudolph this year Smile   I did notice that the radiated side was much warmer for a good 3 weeks or so after treatment ended.  I also went to Walmart and got a few Ahh Bras in a larger size when this whole journey started.  Worked great after surgery and again during radiation.    
 
Linda
 


-------------
DX IDC TNBC 10/12 age 48, Stage 1, Grade 3, 1.5cm
Lumpectomy DD AC & Taxol BRCA- rads X30 finished 5/13


Posted By: Linda2907
Date Posted: Jul 11 2013 at 11:48am
Well, I think I'll leave the scratching in public to my dogs! Actually, I wouldn't dare scratch, I'm too afraid of damaging my breast with my finger nails.

I also noticed that the radiation side was hotter to the touch. Especially right after treatment.

And, yup, Rudolph is on his own. The nipple is no longer bright red, but reddish brown. It's no longer 3x the size of the unaffected breast, but down to 2x.

Tennislaw: I am also wondering (understatement) about why I needed radiation. No margins, no nodes, WTH? I'm sorry I had it because I am not at all convinced that it was necessary or will make any difference in my outcome.

As far as blisters that peel, well, that sounds nice. I seem to have gooey pus pods that leak. For some reason the only place I had an ugly skin reaction was on the lymph node incision. Where there were no bad nodes! Did they target my radiation properly? I don't know. The lumpectomy incision turned a spectacular bright red immediately, but just stayed that way. That incision is a very nice, straight, thin, white line. The area around the incision is still very red, but no skin problems at all.

To my breast cancer sisters who went back for boosts after skin eruptions: I salute you. I wouldn't go back for a million dollars! OK, maybe a million, but I'd need it in cash.

The overall breast pain is now less than 25% of what it was, and even then just on the outside breast below where the lymph node incision was made. I am also starting to feel better, my energy level is improving. I feel like moving around and doing some housework. I just have to watch reaching or stretching a little too far.



Posted By: Tennislas
Date Posted: Jul 11 2013 at 6:42pm
I didn't have any overt effects that I "feel" from either the radiation or the chemo that I had, but now looking back, I'd like to say that I would have had the courage to refuse them.  There hasn't been enough research since triple negative was identified to say that whether either was needed or not.  I think the docs just wanted to "Throw the Kitchen Sink" at it because they didn't know exactly what to do.  

The reason why I say overt effects is this:  One of my doctors told me after I had had a scan that one of my kidneys was not working, and that I had some liver damage.  Now, I wonder what caused that?

Do any of you have any auto immune issues?  I have had several things pop up lately.  Did I always have a suppressed immune system or is that the effects of my treatments?


Posted By: nrice1
Date Posted: Jul 28 2017 at 12:33pm
I hope you are doing well as this post is older. Could you please share with me who to contact or wh what to look up? Iam opting out of chemo and rads. 1mm tumor 0/4 nodes clear. Obviosly tnbc idc grade 3.


Posted By: TriplePositiveGirl
Date Posted: Jul 28 2017 at 12:46pm
Hi nrice1 -

I can totally understand opting out of chemo - I would too in your situation, but radiation does ensure that all cancer cells at the tumor site are killed, which is why radiation is used. What did the doctors say? You were VERY fortunate to catch this at such an early stage! 


-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.


Posted By: Linda2907
Date Posted: Nov 06 2018 at 7:55pm
Hi - It's been 5Ĺ years since my last post. I'm still alive even though I refused chemo, and was pressured by the powers that be at the cancer centre to just do it as it was 'standard of care'.

Thing that bugged me was a news report I heard last spring that revealed a study strongly suggesting that chemo is unnecessary for earlier, smaller TN cancers. I KNEW IT!

I knew it in my heart in 2013. I'm so glad I listened to myself. I would not have done well with chemo; in fact, I refused the chemo because I truly believed 1) it was unnecessary for my specific cancer and surrounding details and 2) it would kill me. I was so tired and run down.

I don't know if radiation was a contributing reason why I haven't had a relapse, but I still have side effects from it. My left breast is still very tender to touch. The incision site in my breast is also tender if pressed upon.

Once again, I just want to say that people should do whatever they want - it's their life and their body and I don't judge. I'm just glad that I did what I knew was best for me.

Linda


Posted By: Monica5124
Date Posted: Nov 08 2018 at 9:41am
I am a 77 year old women recently dx with TNBC. I had a lumpectomy and have been going to medical oncologist for second opinions.  I am (according to my medically oriented family) a difficult pt.  I had my original evaluation for chemo by a doctor who did not instill confidence in me.  I then decided to go for a second opinion at a University hospital.  I left there saying YES, chemo does not sound that bad. Being 77 they would not use the full army of drugs.  Having friends who are in the research field, they insisted that I go to MD Anderson for a yet another 2nd opinion.  Treatment plan was the same but she encouraged me to make up my own mind.  I researched the issue to the ninth degree.  I worried about the fact that if it came back I would be upset that I had not taken the chemo.  We live in Florida and havingbeen staying with my son during this whole ordeal.  My husband is anxious to go back to Florida.  After all of this I made up my mind on a dime and decided to fore go chemo and do just radiation.  Your post has made me feel better about this decision and I thank you for posting it.  I am off now for my first appointment with the radiologist.  Being 77 I am blessed that all of my children are raised.



Posted By: Linda2907
Date Posted: Nov 08 2018 at 12:14pm
I wish you all the best in your recovery.
FYI: after the partial mastectomy my margins were clear and my nodes were clear. I found the lump 6 years ago. I am now 61.
 
I would readily take chemo for certain types of cancers such as leukemia or lymphoma, or other systemic cancers; but, for a single lump that was successfully removed, I had serious misgivings. I do not regret my decision, and would not even if I had a recurrence.
 
I am also a difficult patient, but a studious one who did a lot of research before making my decision about my body.
 
 


Posted By: Lillie
Date Posted: Nov 09 2018 at 2:35pm
Dear Monica 5124 and Linda2907,
What was the stage of your breast cancer.  I assume it was maybe stage 1?  I also assume it was TNBC?  I am a 12 year survivor of TNBC.  I had a mastectomy and 8 chemo treatments.  I was in a clinical trial which added one drug to the three which were considered the standard of care in 2006.  Mine was stage IIb with involvement in one lymph node.  I was not a difficult patient.  I wanted to have some assurance that I was going to live more than 3,4,5 years after treatment. 
The thing about TNBC is that the cancer cells travel through the vascular system.  If only 1 cell escapes and hides in the body, it can cause a recurrence later in life.  That is why  I wanted chemo in hopes that if 1 cell did escape, it would be wiped out by the chemo. 
I wish the best for all of you ladies with the decisions you are making.  I have studied also, and know that TNBC cannot be included in the same category of other breast cancers.  ER, PR, and HER2 are breast cancers that have target drugs to ward off recurrence for years.  TNBC has no target drug YET. 
Love,
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: Meadow
Date Posted: Nov 10 2018 at 12:48am
Lillie said just about everything I wanted to say. But I want to add that my cousin had Stage I TNBC with a 1 cm tumor, nothing in lymph nodes, clean pathology report. And sadly, there was metastasis three years later and she passed away soon after. Likely it spread through her vascular system, as Lillie discussed. I hope people don't hate me for posting this. I agree everyone controls their body and needs to make the decision that feels right to them. But I think it's important to understand how aggressive TNBC can be. As Lillie says, it is different from other types of breast cancer, a totally different disease.


Posted By: Linda2907
Date Posted: Nov 10 2018 at 6:06pm
No one will hate you here. Your choices are yours and all choices are legitimate.

I'm truly glad it worked out for you. I don't remember whether I was ever told what stage I was at. I don't remember asking, either. I really don't care at this point, and I don't remember caring much about scores then.

I do remember being told that TNBC was always very invasive and aggressive. I remember asking whether the cancer centre would test to determine which of the usual chemo treatments would be best against my tumour for efficacy, as was the usual practice in many European countries. I was told that "no, we don't do that here". I asked if there were any harmonized treatments like nutrition or immunotherapy. Nope.

I did ask to have a full mastectomy on the infected breast, but once again I was told 'they don't do that'. They only do partial with chemo & rads, which he assured me was just as good. I had no choice regarding which surgery or which surgeon. I told the surgeon that I would not be having chemo and he just smirked at me. He did do a good job at removing all the tumour, though.

For the record, being difficult just meant that I asked a lot of questions and did not follow, to the letter, the only treatment(s) they did offer. I was never rude, impolite, or raised my voice at any time. I always behaved well and was treated in the same way by everyone I met in every clinical setting.

My first time at the cancer centre I was given a questionnaire of about 20 pages. Why? I had already filled out a number of them. But this one didn't just include medical history - it was kind of out there. A lot of questions about feelings and stress levels, exercise, work and sleep habits. How did I feel about the cancer? Well, on the whole, I guess was against the idea. It wasn't the usual medical questionnaire, it was a survey.

In that survey they mentioned that the treatments could possibly be part of a clinical trial. The survey subtly asked for a signature of approval. I did tell the intake resident that I would absolutely refuse to join any clinical trials. They didn't like that one bit. Too bad, so sad.

Those of you in the States who want 'free' gov't-pay health care - be careful what you wish for.



Posted By: Linda2907
Date Posted: Nov 10 2018 at 6:37pm
It's coming back to me. That survey also asked about my relationships with friends, family, significant other. Was I married? Happily? Did I have children and satisfactory, supportive relationships them and with friends. They even asked if I was satisfied with my sex life. Jeez! I wonder what help, if any, would have been offered if I had said no? Most questions had a sliding scale from 1-5 or 1-6.

I'm guessing I would have had to fill in that same survey at various points along my treatments and for, possibly, 5 years after. I suppose a medical school - or some group - was conducting a longitudinal study on the effects and emotional impacts of cancer treatments and, perhaps, of having cancer itself. There was never any disclosure that I was being asked to participate in a study group.


Posted By: gordon15
Date Posted: Nov 10 2018 at 7:20pm
The question to ask is " what percentage improvement is there in the "five year survival without recurrence" - by having chemotherapy. Then, compare that to side affects/physical dangers in your age group.

-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: MsBliss
Date Posted: Nov 11 2018 at 3:57am
I was diagnosed in 2009.  I was stage 1, had a 1.4 primary, with .7 high grade DCIS.  I had two lumpectomies, the second one for a dirty margin.  I consulted with many different oncologists and they all recommended Taxotere/Cytoxan.  In the end I did not do chemo or rads.  But it was a very difficult decision.  I had secondary health issues which I had to factor in, however, into my decision to skip chemo. 

I am reluctant to broadcast that I skipped chemo and rads because it is a very dangerous road to take.  I would never have skipped any of these options had I been stage 2 or higher and if I did not have the secondary health issues, I would have probably done at least chemo. 

Also, it's not that I did nothing at all.  I went on an integrative protocol and made lifestyle changes.  It was mostly for my mental health because it was all very scary to be skipping chemo and other interventions.  I had to feel as though I was doing something, but the truth is that no alternative medical protocol is strong enough when it comes to this.

I did however have extremely aggressive pathology--so aggressive that the pathologist called the diagnosing surgeon late at night to discuss her findings.  I rolled the dice, to plainly say it, and I would not encourage anyone else to do this.  TNBC is simply too aggressive to risk it.


-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions


Posted By: parrynd1
Date Posted: Nov 11 2018 at 5:15pm
To give a little more insight. I did neoadjuvant chemo, had a lumpectomy with clean margins, 1 node removed that looked clean. Further pathology showed it did have some cancer cells present so I went on to do more chemo, finishing with 30 rounds of radiation. I had a local recurrence near the end of radiation and went from NED to stage 4 in a few months. I live with what I chose treatment wise knowing I did what I felt was best for me at the time. You can throw everything at this disease and get nothing back or you can do the minimum and be clear the rest of your life. There are no guarantees. Do what you feel is best for you, but I will warn that if a recurrence happens do you want to look back and know you could have done more the first time?

Looking back I wish I would have done a double mastectomy, but I did what I thought was right for me with the information I had at the time. Itís too easy to look back and play the woulda shoulda coulda game and to some degree I think we all do no matter the future outcome. Whatever you choose please donít underestimate this disease.

-------------
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin



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