Topic: Long Term Radiation Side Effects 10+ years After?

Forum: Radiation Therapy - Before, During, and After — What to expect from treatment and ways to cope with side effects.

Posted on: Jan 9, 2014 01:49AM

Posted on: Jan 9, 2014 01:49AM

Barbarella60 wrote:

I am new to this forum and I am looking for others and help in what I am now experiencing.  I had left breast Stage 1, ductal in situ, 1cm in size about 18 years ago. I had a lumpectomy, with a "sandwich" treatment.  3 treatments of chemo consisting of Adriamycin, Cytoxin, and 5 fu, followed by 7 weeks radiation, then 3 more treatments of chemo.  I was given extra doses of radiation because of a hospital confusion. The surgeon said he took out all lymph nodes (negative) and sent them to the pathologist in 3 cassettes or containers. The pathologist said he received 3 lymph nodes. The radiation oncologist saw the error and it was decided that since I was getting all treatments available, extra radiation doses was the only remedy, to make sure no lymph nodes were left and cancerous. I also had 5 years of tamoxifen. Do you think overkill? 

Now 18 years later I am experiencing severe left breast fibrosis with major dimpling at the lumpectomy incision site, hardening and swelling of the breast.  I thought my cancer had returned but negative. Also having stabbing left chest pains occurring occasionally. Now 2 years after the onset of the fibrosis I am having shortness and trouble breathing, dizziness, tired with no absolutely no energy.  I had all heart tests including cardiac catheterization angioplasty.  All negative.  Except for a positive chemical induced stress test. Now they will look at the lungs.  

With the left breast complications and now the increased size disparity I am looking at a double mastectomy, my choice this time! With cosmetic surgery this time.  Even tho I live in major metropolitan area with major hospitals, I was never given real choices in what treatment to have.  If the different possible treatments had been discussed I would have had a double mastectomy without any other treatment. I am grateful for my life, but all the side effects from the chemo & radiation have had a significant effect on my health.

Has anyone experienced side effects becoming major health issues years after the treatment? I don't know where to go, since no one seems to know about this.      

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Jan 9, 2014 06:15AM Srh242 wrote:

Did you had dcis or stage 1 idc , this wasnt clear from your post? 

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Jan 9, 2014 11:26AM Barbarella60 wrote:

It was stage 1 idc.  Sorry for confusion.  Also it was estrogen receptive.

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Jan 10, 2014 09:28PM CessaLyn wrote:

I was diagnosed w/ right side, stage 1 ductal in situ 3 cm, estrogen positive, breast cancer, with no lymph nodes involved, on Dec 27, 2004, had lumpectomy 17 days later on Jan 13, 2005, followed by 12 weeks of radiation - I'm here over 7yrs later, w/ no reoccurrence, yet still suffer greatly from underarm & chest wall/muscle/rib pain, with swelling! Hurts to raise my arm above my head, or to wash the back of my hair, or to stretch in any fashion? I'm told it is probably costochrondritis (but all my info on this says it should lesson over time, yet mine never has) began almost immediately with the start of the rad treatments. I also have RA & feel like this might contribute to the inflammation. But what you are describing sounds a lot like costochrondritis, you might bring this up with your caretaker & see what they think. I feel like I wasn't fully made aware of the complications from the damage radiation would do, I had very good insurance so I could make choices in treatment but wasn't even made aware of things like the seed radiation treatment that would have been one week long in the hospital, & from what I understand does a lot less damage than weeks of radiation. Please, Please, Please, - anyone who is newly diagnosed, in early stage, take the time to do the research, read personal experiences and not just what the radiologist/oncologist is telling or not telling you, I sometimes wonder if it was a $ issue not to bring up other types of rad treatment since the final bill to my insurance co. For just the rad treatments was close to $79,000 - YOU have to live with the side effects, they don't! Happy to be here, but would like a little less pain.

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Jan 12, 2014 12:23PM desalonde wrote:

Barbarella, Do you recall what dose you received for your course of radiation? That is how much total to whole breast over how many treatments and whether you got "boost" and what does?

Desalonde

Dx 10/21/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/14/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jan 12, 2014 08:25PM Barbarella60 wrote:

Desalonde, I will have to go through all my old paperwork, reports to see everything that was done.  I really need to know and understand my diagnosis.  It's been so long and I have a tendency to ignore or personally not have the need to know all the details.  If someone were to ask me the exact year of the surgery I could not tell them.  I know it was January 3, but it is a guess as to the year. My sister, who just passed away kept track of all my important dates.  I really should write them down before I really do forget them. I don't understand your last sentence "and what does"?

Cessalyn, you are right.  They need to give you truthful, information on the treatments and the side effects.  Back 18 years ago lumpectomy & radiation.  I remember not having a second thought in having radiation.  Now my armpit is swollen, pain & fibrosis in left breast and possible heart & lung damage.  If I had it all to do over again I would have a double mastectomy.  No radiation.  But what's done is done.  Gotta go on from here, no redo. They know a lot more information today than then. But our decisions should be discussed by independent parties with no financial involvement. 

I will find that information out by this next week.  Thanks Desalonde & Cessalyn.

Barbarella

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Jan 12, 2014 08:42PM Tomboy wrote:

i think she meant what dose

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jan 12, 2014 09:19PM Barbarella60 wrote:

Thank you Kathec, see how out of it I am. No one even talked of dose then.  I wonder if hospitals etc. have to keep your files for how many years?  But I do know that I have some papers. Barbarella

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Feb 1, 2014 06:22AM gilbert wrote:

I had a lumpectomy followed by 31 rad treatments that ended Jan10,  I am really sore over my whole breast, thought about calling the doctor, but not sure what he could do anyway.  He wasn't very helpful when I was going through treatment. They sure don't inform us very well about the effect that the radiation will have on us.  I think it it's all about the money.  Every time I would ask about a certain problem They would tell me the only side effects were just fatigue.[bs] and that could last for awhile after rads were over. I seem to be getting sorer by the day, I hate to think that this could go on for years.. CessaLyn is right anyone newly diognosed should check out all options. I did make the decision about not taking the estrogen blocking drugs because of the side effects, didn't read alot about long term effects of radiation. I wish I would have looked deeper.

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Feb 7, 2014 09:29PM Barbarella60 wrote:

gilbert

I would think that from radiation treatments that ended Jan 10, it is a little early to tell.  But I would definitely check it out with someone.  I do remember how tight and red and burning it was for a while afterwards.  I think it took quite a while for my skin to feel like it wasn't going to rip.  I know but that is how tight it was.  I was very diligent in using all the cremes they recommended.  I also had 3 months (9 weeks), 5 days a week, of radiation. Then immediately after radiation I started the 2nd series of 3 treatments for 7 weeks of chemo. After that 5 years of tamoxifen.  Amazingly I think that was the easiest.  

Believe it or not, my whole arm pit and back towards my shoulder blade is still numb.  If I have an itch I have to use a wooden back scratchier and just scratch as hard as possible to feel it.  It is very uncomfortable having an itch that can't be satisfied! Just one of the sides I've had for 18 years.   

I remember back that they can certainly be insensitive to your concerns. Since most insurances allow for 2nd opinions, maybe you can get a 2nd opinion from a radio-oncologist. Preferably someone your comfortable with Male or female? Mine was a female radio-oncologist who caught the mistake between the surgeon and pathologist. 

Kathec I am working on getting my reports from the Dr. and hospital.  I have just gotten the authorizations and hopefully they will still have my records, because they only keep them for so long. I am very curious as to the dose etc.

gilbert good luck and let me know how your doing.

Barbarella60        

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Feb 9, 2014 07:21PM Sunny1012 wrote:

I am new to this nightmare.  I had a lumpectomy on January 8, 2014 for ILC Stage 1 and sentinel lobe removal.  I had a long consultation with the radiation oncologist and did not leave feeling convinced about radiation treatment.  I am considering skipping radiation and just doing the Tamoxifen even though I am not crazy about that either.  I have read every piece of research I can on radiation and its a damned if you do and damned if you don't situation.  I am leaning on the latest research on women 65 and older who skipped radiation but took the hormone therapy and have done fine.  I am under 65 but the doctors talk about whether the industry is over treating cancer and are really starting to look at what is really necessary.  I would live to hear from anyone who has skipped radiation and have been cancer free several years down the road.   I also would like to hear from survivors who can share the pros and cons of radiation in their choice and life to this point.  The decisions we must face on this journey are overwhelming .  Please share your thoughts. Thank you

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