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Radiation needed??

sk23new
Posts: 15
Joined: Nov 2013

Diagnosed with Lobular carcinoma in August 2013 - have had left side mastectomy - 6 cycles of chemo - so far 8 cycles of herceptin (Her2 positive) reconstruction left/reduction right 

now i am facing the Radiation phase (6 wks) and am having serious doubts about the necessity for it. 

would like to hear from others who have gone through the treatment - good & bad results

I did have lymphnode involvement - 8 out of 13 cancerous - that's why the radiation was put back on the table even tho i had a mastectomy.

Just so frustrated that there is no way to tell if the cancer is still there after chemo...i hate putting my body through life changing treatments not knowing if it's even working...

~~~Sue

disneyfan2008
Posts: 5332
Joined: Oct 2010

HI...

I never did chemo ONLY radiation- so much much advice on this subject. My treatments lasted 6 wks mon-fri-total time for me was less then an hour (IN and out) I am sure it varies with others-but no knowledge for sure.

MINE was not painful, no side effects, (NO burning, chappint, fatigue etc)

 

Best Of luck and pixie dust on it's way..

Denise

desertgirl947's picture
desertgirl947
Posts: 419
Joined: Oct 2012

Same here.

In addition to chemo (8 infusions over 16 weeks), I had radiation therapy.  My goal was to tackle my bc aggressively, and so I did whatever my onc recommended.  I thought the radiation therapy was much easier than the chemo.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I have had a total of 16 weeks of rads in all of my treatments, in my opinion although it is never fun to have to fight cancer it is best to do all that you can to get the best results and best chance of survival.  No one can tell you what is best for you this is simply my view and the course of action I choose for me.  Wishing you all the best!

 

RE

camul's picture
camul
Posts: 2034
Joined: Dec 2010

To shrink the tumors which were putting pressure on the surrounding nerves and hopefully slow growth and improve my quality of life.  The areas radiated were hips, pevis, and tailbone (it was the tailbone and pelvis that were done 2x).  This past Sept. October it was right knee from mid calf to 2 inches above knee.  Then, mid thigh to right hip. Then, my thoracic spine and top 2 lumbar spine.  

It really helped thé pain, although, now lymphadema in my right leg.  Overall, quality of life improved.  The thoracic spine area was the one area I questioned.  Learned that numbness in legs was most likely from tumors on spine, and if they continued to grow, I could become parylized from the waist down!  Once learning that, there was no question!  She said that I cant have any more to any of these areas, but if cancer goes to organs, I could still have more.

Treatments have béen aggressive from the start.  It has been 3 1/2 years with mets, 2 1/2 yrs w/weekly chemo, biophosphates,anti_estrogens, herceptin, etc. If you are really questioning the neccesity, get à 2nd opinion.

I trust my onco, yet when hé said hé has done all he can and it is time for hospice.  I went for a 2nd opinion to try and get in a trial at a large cancer center.  Didnt qualify for any trials, but he felt there were a few more options.  I have nothing to lose, and or.gave me.hope.

If you are unsure, always ask as many questions as you need to feel good about your decision to either go forward with thé drs recommandation.  If you are still not sure, get a second opinion.  Bottom line, it is your life. You know your body better than anyone.  If something doesnt feel right, than always ask until you are sure!

I wish you thé best.

Carol

TraciInLA's picture
TraciInLA
Posts: 1838
Joined: Jul 2009

Sue,

I am not a medical professional in any way...but, if you were my sister or best friend, I would be urging you to go through with the radiation that's being recommended, because you had positive lymph nodes.

Following bilateral lumpectomies in 2009, I did 4 rounds of chemo (Taxotere/Cytoxan), then 33 radiation treatments.  Even though I burned really badly in the last couple of weeks, I still feel that radiation was light years easier for me than chemo.  

Chemo affected every part of my body -- digestively speaking, you name it, I had the side effects, usually all at the same time, and sometimes really debilitating.  

Radiation, however, with the exception of the fatigue, generally only affects the area being radiated.  So yes, I was tired, and yes, I had to deal with burns in the last couple of weeks, but I was always able to eat normally, taste everything, and no longer had to live in the bathroom.

That's just my experience, and of course everyone is different -- but for me, radiation was an (ALMOST!) welcome change from chemo.

Traci

TraciInLA's picture
TraciInLA
Posts: 1838
Joined: Jul 2009

I'll add one more thought on this issue, Sue, because I so understand your frustration at not having definitive, black-and-white information on treatments.  So is the cancer gone, or isn't it?  It's SO frustrating that medical science hasn't advanced to where our doctors can truly, 100% answer that question.  

When I was making these decisions for myself -- whether or not to do chemo, radiation, Tamoxifen -- what kept going through my mind is how I would feel if, 5 years later, 10 years later, I had a recurrence, and had not done everything I could.  I know I'd be kicking myself:  What if I'd done chemo?  What if I'd done radiation?

Of course, I know that I may still get a recurrence somewhere down the line.  But, for me, it was very, very important to know that I'd done everything I could do.

Just my feelings, thought I'd share them.

Traci

lynn1950's picture
lynn1950
Posts: 2572
Joined: Jun 2008

I can't add to what others have said, except to be another to encourage you to do all you can to fight.  No one can predict with 100% certainty that all the cancer is gone.  I was staged at IIIa and had A/C and T, plus radiation (33 treatments) and I now take Arimidex (this is my 6th year).  Should I have a recurrence, I will know that I have done all I can and that makes me feel good. You can do it! xoxoxo Lynn

CypressCynthia's picture
CypressCynthia
Posts: 3953
Joined: Oct 2009

For me, radiation was literally a piece of cake after chemo.  I had a rough time with chemo, but just a mild sunburn with radiation.  But we are all so very different.

I can't advise you but I can tell you that my little sister decided radiation was overkill after chemo and hormone therapy (an she had no nodes involved).  She had a local recurrence 5 years later and then had to have radiation and is on hormone therapy indefinitely.

As someone with Stage 4, I am here to preach that cancer is the enemy.  The treatments can be brutal (there are few that I haven't endured), but never lose sight of your enemy because cancer is even more brutal and incredibly sneaky.  And I am speaking as a 27 year survivor.  Keep fighting!!!!

sk23new
Posts: 15
Joined: Nov 2013

thank you all so much for your advice!! I am just feeling reluctant to put my body through another ordeal after finishing up the chemo & reconstruction. The surgeon's PA really painted a bleek picture of what the rads can do to my newly formed "breast" including thinning the tissue so much that it can no longer hold the implant - resulting in a back flap surgey to reinforce the breast tissue. Has anyone had that happen? I can handle the tiredness (what else is new?) and some burning...but more surgery???

Naturally I want to know I did everything I could - but also don't want to be "scared" into doing more than necessary causing more damage to my body. Already living with Nureopathy in my feet, drastic physical alteration to my chest & who knows what all those toxins have done to my insides. can't radiation actually cause cancer in some cases?

what would be the repercussions of waiting six mos to do the rads? anyone know? I assume most people just want to be done with the treatment ...i'm just wondering if I would handle it better if i was stronger & completely healed from surgery.

i am researching as we speak - but appreciate all the feedback i can get from actual patients point of views!

thanks again!! ~~Sue

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