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All TopicsForum: Radiation Therapy - Before, During and After → Topic: Long Term Radiation Side Effects 10+ years After?

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 04:49AM

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 09:15AM Srh242 wrote:

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

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Jan 9, 2014 02:26PM Barbarella60 wrote:

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

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Jan 11, 2014 12:28AM 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 03:23PM 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?


Dx 10/21/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/15/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jan 12, 2014 11:25PM 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.


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Jan 12, 2014 11:42PM Tomboy wrote:

i think she meant what dose

www.kamikazikat.blogspot.com Ring the bells that still can ring, forget your perfect offering, there is a crack in every thing: that's how the light gets in. Leonard Cohen Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jan 13, 2014 12:19AM 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 09:22AM 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 8, 2014 12:29AM Barbarella60 wrote:


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.


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Feb 9, 2014 10:21PM 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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Feb 10, 2014 02:45PM desalonde wrote:

Hi Sunny,

I am a bit further along than you are but can only share your sentiments and not really shed much light. I have read lots of medical articles going back years and consulted 3 rad oncs and it seems clear there is no consistent "prescription" even for same person.... different docs give different opinions depending on where they trained so a lot of it is culture and custom not hard science about what is minimum effective dose. That means making decisions with blinders on. What is worse.... RO may be ( mine is) defensive and irritated when you quote a literature info of concern to you and insist that you" trust" their experience......even though they disagree among themselves and may contradict the literature. It's primitive and makes me mad because women deserve better science to reduce the suffering that accompanies these treatments! I'll be very interested in hearing posts from women who can shed some light on this and please share your experiences of what dose rads you got... whole breast or boost... and the results and how far out you are. Blessings. Desalonde

Dx 10/21/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 11/15/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Feb 10, 2014 03:36PM solsticegirl22 wrote:

I had twelve weeks of radiation and multiple boosts in 2001 after lumpectomy - all because I opted out of chemo.  By the end of the treatments I was bleeding out of my pores and my nipple skin peeled off.  Long story short - ten years later (2010) diagnosed with recurrence in the same spot caused by over-radiation!  Oh - and two fractured ribs and painful nerve damage that I deal with to this day. When I got my full mastectomy in 2010 - the incision wouldn't heal and got horribly infected and I ended up at a wound specialist.  I was told that this was due to radiation damage to my blood vessels and that any kind of reconstruction would be out of the question for me.  My oncologist apologized!  Well that's fine but he's not the one having to deal with this pain for life, and two horrible scars instead of breasts.  So that's my experience with radiation - It may not be typical - but that's what happened. 

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Feb 10, 2014 09:33PM Sunny1012 wrote:

Thank you Desalonde and Solsticegirl22 for responding. I appreciate your honesty.  I am sorry we are all having to have this conversation but glad you are out there.  Nobody can help me the way people who have gone through it can.  I am sorry  solsticegirl22 for what you are going through and the truth is what you say is a real possibility for anyone and I thank you for sharing that.  I meet with a Medical Oncologist this Thursday.  I have already met with 2 prior to my surgery when I was trying to find a good team.  This one is referred to me by the surgeon.  They said no chemo and now I guess they want to discuss it.  Not going there.  I do have to discuss Tamoxifen so I will have my questions ready for that as well.  I just really feel at a crossroads. As of now I am supposed to follow the standard of care and do the radiation and then Tamoxifen for 5 years.  When I asked the RO this question , if you aren't sure if there is any cancer left floating around after the surgery, how would you know if the radiation was working, she said that's a good question.  Basically, it comes down to whether or not you have a recurrence.  Which by the way can happen whether you do the radiation or not. In the study I talked about earlier, out of 100 women that got radiation , one had a recurrence anyway, 4 prevented one and 95 had unnecessary treatment-the researchers words not mine.  I find that very interesting.  I am so glad I have options as I know so many out there are fighting one hell of a battle.  But the option is follow the standard of care or not and its in your hands either way, consequences or benefits. Nobody offers any promises.  In fact I was told I would have to sign paperwork acknowledging the things that could go wrong due to radiation!  Please continue to share ... Bless you all

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Feb 10, 2014 10:06PM Solen wrote:

I had radiation 13 years ago on my left breast.  It was 6 weeks whole breast, plus 4 days of a "boost" directed where the cancer was.  I did not have ANY problems with the rads, my skin held up well.  Just looked a little sunburned.  Apparently, when you are very fair like me, radiation is easy?????  I thought the techs were lying to me when they told me that, but apparently there is some truth to it.  Totally not logical, but there it is.

About 3 years ago, I had a frozen shoulder on that side.  8 months of painful OT and I had range of motion back!Now, people get frozen shoulder w no radiation or even cancer, and I did sort of hurt my shoulder then babied it.  But it is something that is more common post rads.  So IF you do rads, be aware of this issue and work on keeping range of motion.  I started pilates about a year and a half ago and I swear by it! 

Just had bilateral mastectomy and got back to pilates in 6 weeks.  I had it because of cancer in other breast (thank you BRCA2  whoo hoo lucky me!) 

AND was told by first plastic surgeon that all he could possibly do is a lat flap due to prior rads. (60% chance of infection is what he quoted)  and what the heck did I need my lattisimus dorsi muscle for????  Was I an Olympic swimmer????  Than I didn't need that muscle!  UMMM NO way!  Like to keep that muscle on my back thank you very much!!!  Total frikin nut case, if you ask me!

Second surgeon offered me smaller implants than what I had (yes I had implants from before my first diagnosis)  Yes, rad side implant is a little harder than other side, but NO infection at all and a very easy recovery.  My skin and muscle were not really compromised from the rads that much.  Sounds like you had a rougher time of it than me, but I certainly would get multiple opinions in your shoes. 

It is one of the questions that now come to mind.  When the docs quote stats..............well recurrence is more likely if your dr misses some tissue, no?  rads cause more problems if dosage is higher????  One thing I learned after my mother died from breast cancer is not all docs follow the same protocol.  I was young and unknowing until I had my own diagnosis......some docs are better than others, and I don't always think those with 'great' reputations are necessarily better.  So when they quote stats, to me they may be comparing apples to oranges.  Only you KNOW your body best and can go with you gut in who you trust and what is best for you.

I have to tell you, before BMX, my breasts were two different sizes, now they are smaller, balanced size wise and harder, but I am ok w that.  I am working hard to get in the best shape possible to match my smaller boobs.  I think that can only help me.  I actually am very pleased with the outcome and feel I have a new lease on life, now that the threat of cancer is lessened for me.  Wish you the best whatever choice ou make!

Dx 2/23/2001, DCIS, <1cm, Stage 0, Grade 1, 0/2 nodes, ER+/PR+ Surgery 2/26/2001 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 5/15/2004 Prophylactic ovary removal Dx 8/26/2013, DCIS, 5cm, Stage 0, 0/2 nodes, ER+/PR+ Surgery 11/15/2013 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx
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Feb 11, 2014 02:25AM - edited Feb 11, 2014 02:28AM by Barbarella60

After having gone through this many years ago, I am struck at how fresh the conflicts are in deciding what treatment to do. My oncologist gave me recommendations, but said it was my decision. But if he felt I was being too independent he was there to steer me into the preferred treatment.  Talk about overkill treatment.  I am in the process of getting my records, but I had Stage 1, ductal in situ.  I had a lumpectomy chemo/radiation/chemo and 5 years tamoxifen.  In 2nd opinion I was told of only 1 other recommendation, Methotrexate verses Adriamycin. Since I was pre-menopausal I chose the stronger Adriamycin with Cytoxin and 5Fu. Since both treatments had Cytoxin and 5Fu, to me it didn't matter which because it is the Cytoxin that puts you into immediate Menopause. This sealed my fate of never having children.  That I think was the biggest loss that I had to deal with. But at that time they really didn't give me a choice of no chemo, as there was the scare factor in the percentages. They strongly recommended it but you had to tell them what you wanted.  Strange now that I think about it.  

As far as 18 years after radiation I do feel my self-esteem has been extremely affected by the radiation. After lumpectomy and radiation I was left with 2 completely different breasts. I was always overweight and because of an ankle fusion, weight has been a issue.  I was told by many plastic surgeons to lose weight first before reconstruction. Well better said than done.  Now 18 years later I have one rock hard perky breast and one grandma's breast. A situation that I have endured for many years.  Hopefully I can now insist on a plan to fix a problem that should have been taken care of years ago, when I was going through the treatments. Also at that time I was not that heavy and not knowing the true effects of radiation, I was never offered any reconstruction in the disparity even at that time. But radiation affects sneak up on you. After a time the true mutilating effects become apparent.  

I also took 5 years of Tamoxifen.  Most of the women I knew didn't finish the 5 years.

Sunny, point is yes I made the best decisions I could back then.  Yes I do feel like a guinea pig that has spent too many years ashamed of her body, that radiation caused. Only now have I been able to come out of hiding and say enough is enough.  Something has to be done for me to be a woman again. I am thankful that I have been cancer free for 18 years.  Maybe it was the aggressive treatment, maybe not. 

If I had to do it again I think I would have a double mastectomy and reconstruction, as I was always large busted. NO I would not have the radiation! I would have to think long and hard on the chemo.  As so many side effects that last or show up years later.  Chemo fog acknowledged now but not 18 years ago (can last for years), incontinence, and forced menopause etc. But I do think I would do the Tamoxifen again. 

Solsticegirl22 you are in my thoughts and prayers.  I am so sorry for your Drs. apparent disregard for your health.  Sorry does not even come close to what you have gone through.  

The Drs. are very removed from the actual treatment and what we are going through with their prescribed treatments. Anyone going through breast cancer today, really has to be their own advocate and almost become their own Dr. by doing research and talking with other survivors. That is very apparent to me as there are so many women diagnosed with breast cancer now, more than ever before. No one wants to be a number after you have decided what treatment to have, which seems to be the case. But as Desalonde and Solen have said only you can make that decision.  Everyone is different. I hope we can all find the peace and fortitude to overcome these debilitating effects, that will be with us for our lives.

Gilbert how are you doing?  Thinking of you.            

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Feb 11, 2014 01:34PM solsticegirl22 wrote:

Thanks Barbarella for your kind thoughts.  I agree - I made the decision at the time based on what I was told (and not told).

If I had known - I would have just had the mastectomy and that's it.  I had clean margins and clear lymph glands.  I already know that I would have healed and that would have been the end of it.  Kinda like pulling out a bad tooth!  I did years of research into secondary cancer caused by radiation and am 100% certain that, at the doses I received, that's what caused it.  After my right breast mastectomy I lived for about two years with one large droopy left breast and the fear of cancer coming back for a third time so I had my left breast removed last year.  No complications though cause that side had received no radiation.  In fact the difference in healing was amazing.  So now I'm flat but I prefer it.  I'm small so in the winter I wear big sweaters and coats and nobody even notices.  Going braless is wonderful considering the daily nerve pain I experience in my radiated area.  Around the house - its just a loose T-shirt.  My husband and son couldn't care less.

In summer when I go out, I wear two light-weight prosthesis.  What's nice is that I get to choose what size I want to be, depending on what forms I choose.  So now I look like a 54 year old with young perky breasts.  Hey - something good had to come out of all this pain and misery.   But honestly...even if I could get reconstruction I don't think I would anymore.  I'm done!  I've had enough....poison, slash, burn! 

Let's hope in the future they find a better way.

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Feb 11, 2014 11:00PM Barbarella60 wrote:

Solsticegirl22, I agree with everything you said.  You can't beat yourself up over the decisions made at the time, only go forward. I am at the point also where I don't need or want breasts.  I have had huge breasts for so many years, I don't think reconstruction would be the best outcome.  I really do think flat is the way to go at this point. What freedom it would be not to have the heavy weight and drastic disparity.  If reconstruction is difficult with radiated breasts then what is there to do, to have equal looking breasts, or chest?  I would not want to go through multiple surgeries and possible complications at this point. One side effect that I have heard about concerning mastectomies is the tenderness and discomfort of the skin. Even on the painful side. Have you any comments or experience on that?  I too only wear t-shirt tanks, at home and depending on where - out, with very large tops.  Yes that is what I mean, I am forced to hide.  At this point it is too difficult to find a bra that even comes close to fitting.  But I do on special occasions.  Fhanks for the info and good luck.

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Feb 14, 2014 11:58AM solsticegirl22 wrote:

Hi Barbarella,  Yes there is definitely discomfort after mastectomy.  Somedays are bad and other days you hardly feel it.  In many cases women experience something called "iron bra" where you feel like someone but a really tight brace around your chest and back.  Although I've heard that this also happens to women with reconstruction and those with implants as well.  When I get this,  I massage the area with an unscented analgesic cream and do some stretches.  But to be honest - its not so much the chest wall that's the problem - its the lymph node area and armpit - IF they went digging in there and removed lymph nodes.  Most women will attest to this.  This is where most of the pain and swelling is.  I use ibuprofen and ice packs when its bad and do lymph drainage exercises.  I bought a mini-trampoline - its fun and the best thing for lymph drainage.

My surgeon was really blunt and honest and told me that most reconstruction doesn't even look like breasts and they are usually misshapen.  They are not Hollywood boobs.  He made that very clear!  No thanks!  My Mom had a double-mastectomy and she goes everywhere flat.  No prosthesis!  She had very large breasts for such a small woman and was more then happy to be rid of them.

If you want some inspiration check out the posts in the "Living without Reconstruction after Mastectomy" forum.  I got a lot of support there.(excuse the pun  Smile)  It may help you get more information before you make such an important decision.

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Feb 14, 2014 09:13PM TB90 wrote:

I had a left mx on December 18th and for me it was a very easy surgery.  By easy, I mean that the pain was very manageable and all I ever took was Tylenol extra strength and only at night.  It would hurt to move, but I could always find a comfortable position.  I find that I can manage pain if I can stop it with a particular position.  I never stayed on the couch, even the first day post op.  I agree that the underarm burned and hurt more, but again, it was certainly tolerable.  Honestly, I have had headaches that caused me much more anguish than the mx.  I had to sleep on one side only and this may be even more of an issue for those having bilateral mx.  I made certain that I had tops and pj's that buttoned up in front and soft cotton cami's.  The drain was a pain.  Hey, that rhymes.  My DH was prepared to do all meal prep etc. but I cooked the meals from the day after the surgery onward (I love to cook).  I made certain though that I could not vacuum for weeks :) Everyone handles things uniquely, but I wanted you to know how very tolerable this surgery was for me.     

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Feb 15, 2014 11:02PM solsticegirl22 wrote:

Hi TB - My surgeries weren't too bad either.  Just Tylenol as well.  The drains were the worst! 

The pain and symptoms I was describing is 10 year + after radiation and caused by over-radiation and nerve damage.  I deal with it on a daily basis.  I guess I should have mentioned that.  My first surgery was in 2001 - second in 2010 - and 3rd in 2011. (lumpectomy and two mastectomies after recurrence) - they also took out more lymph nodes so now I'm allergic to everything  Scared.  It really sucks!  I still believe that chemo and rads do more damage then the actual surgeries for some people like myself.

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Feb 16, 2014 02:18AM Barbarella60 wrote:

Solsticegirl, TB --- I had extra radiation treatments because of discrepancies between the surgeon and the pathologist.  Those extra radiation treatments focused on my lymph node area.  From what I believe at that time all my lymph nodes were taken out. I think that was standard practice 20 years ago. But the pathologist disputed that, so the extra radiation.  I am numb all these years from the underarm down the inside of the arm, around to the back and shoulder blade on the left side. My left breast is hard with lumps from the radiation, so I guess reconstruction does not have a good outcome. Solsticegirl was there over-radiation for a reason or just because?  When you mean burning etc under the arm is that from mx or node removal?  

I also did not like the drain. My sister who was a surgical nurse came to stay with me for the lumpectomy.  I always fainted at the sight of blood, so she took care of the drain!  Ha!  I didn't even look.  Whimp aren't I?  What chemo did you have.  I too don't know which is worse chemo or radiation.  But I did choose the most aggressive treatment but I believe the major side effects would not have been that much different.  Except for the radiation with extra treatments. Solstice I like your mother's philosophy, as I too agree.  Good to know of the plastic surgeons view and thanks for the site.  

TB is sounds like you are secure in your treatment decision. Anymore treatments scheduled?  I wish I would have had that mx choice, rather than surgery, chemo, radiation, tamoxfen, as far fewer side effects with what I believe same result.  Thanks for the support.  Have a good day.   

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Feb 16, 2014 01:41PM anne31 wrote:

I had a lumpectomy the 8th of Feb with 2   nodes removed which were cancer free. I have stage 2 DICS  .

I have refused to take the pills, and I am not sure if I will have radiation because of the late side effects?

There is a new trail that I will consider that protects ones heart, its called Heartspare.

Hope this helps.

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Feb 16, 2014 03:12PM Jeni1962 wrote:

Hi Everyone, 

I just took to the time to read all of these posts. Warrior women..that's what we are. It's amazing what we endure and go through and come out on the other side...still kicking and fighting! :)

I logged on today...it's been a while because I'm having some issues that I believe are from Radiation treatments.  I had a left breast Lumpectomy in Aug. 2012....then in May 2013...2 more biopsy surgeries within a week of each other in the same breast because of a suspicious area. It was negative. However now....I'm going through P.T. for breast pain...shoulder range of motion issues.  My biggest concern though is I'm having some pretty severe rib pain. Really all over in my chest wall...I've felt that for a while. But under my left breast at the bottom of my rib cage...ironically right under my radiation tattoo....I'm having SEVERE rib pain. Painful to even lay a finger on the area or stretch my body. My P.T. thinks I need to go back to my Radiation Oncologist or my Oncologist to  have it checked out. I am going to do that. It really feels like my bones all in my chest wall are brittle...if that makes sense. I had 5 days a week for 6 weeks Radiation...then 4 days of boosts in the area. I honestly didn't think I would have side effects for this long. It actually feels like it's getting worse. 

Mainly came on here to find out if others have that kind of rib pain. I see that you do. I swear sometimes I think..."Am I just making this up? Am I really still feeling all of this?"  Does that make sense?  Anyhow....thanks for letting me jump in here. Nerdy

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Feb 17, 2014 01:29PM solsticegirl22 wrote:

Hi Jeni,  OMG THE RIB PAIN!  I remember that!  It was excruciating!  Even woke me in my sleep or made me nauseated at times.  In fact, I was convinced I had bone cancer and was going to die!  I can't remember how far out after rads it started because it was so long ago but I'll never forget it.  It happens to most women who had the boosts!  It's nerve damage.  Of course my onc has a big long medical name for it - but that's the bottom line.  Good News - the intensity of pain will decrease in time.  Bad News - It will always be there to a lesser degree.  I'm 14 years out and I still have pain everyday.  Scared  Hope it gets better soon Jeni.

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Feb 17, 2014 02:05PM Jeni1962 wrote:

Thanks for the response, Solsticegirl22.....

I decided to go into Urgent Care yesterday because it was just hurting so bad. They did a rib/chest X-Ray....all bones look good. So that's good. I was afraid I might have had a small hairline fracture. So...I'm still going to call my RAD ONC/ ONC this week and make an appointment just to rule anything out. Doesn't it suck...everytime we have a pain like this we INSTANTLY think the worse! I try not to. I'm a pretty positive thinking person but that pain throws me right into the "What if's" zone!  

Thanks again for responding. Always nice to chat with others who have been there...done that!

Have a great day!!


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Feb 17, 2014 02:41PM Nettie1964 wrote:

I'll post again!  I had terrible rib pain and it ended up being cording!  Had OT for it and it worked right out!  However, I'm still sore upon the "stretch" and I have terrible pain toward my right shoulder in the back to the middle of my back!  Scared to death it's bone mets, but MO, OT and chiropractor all say it's from what the radiation did to muscle, tendons and fascia!  Plus that is the same side that I have pretty bad scoliosis, however, I never had pain before the rads!  

I'm praying that they are correct and I'm hoping the pain eases with time!  I did have one of the ladies here suggest massages, which as soon as I'm financially able, I will look into!

Sorry, so many have had to deal with pain!  Best of luck to all!

Just want to clarify here that I did NOT have two dx! Just once I was done with chemo, the MO said I was 2% ER+! No longer taking Aromasin Dx 12/12/2012, IDC, Stage IIB, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 12/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 3/14/2013 AC + T (Taxol) Dx 8/12/2013, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR-, HER2- Radiation Therapy 8/25/2013 Breast, Lymph nodes
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Feb 17, 2014 11:04PM Barbarella60 wrote:

Hi everyone,

Nettie & Jenni hi & welcome.  Nettie I think you are the first that I have met, that had Adriamycin w/Cytoxan! But I had 5FU instead of Taxol. I always hear of Methotrexate instead. What is cording?  I had messages when I could afford them, and were extremely helpful.  Shouldn't Messages be routine treatments for radiation side affects?

Jenni I also benefit from sharing with women who have the same concerns and experiences that I have. We are definitely warrior women. We just pick ourselves up for a new day. Did you say when you had your radiation treatments, or did I miss it? You are in my thoughts and to get some relief.

Annie what are the "pills" you are talking about? And new "trail" heartspare? You are truly fortunate to have only a few lymph nodes taken as 20 yrs ago they took them all. The fear of lymphodema is still with me all these years.  Luckily . . .  

Hi Solsticegirl. My experience with radiation chest pain, just started now 18 years later with a vengeance.  I don't ever remember chest pain, just the red burning, tenderness and extreme tightness after the treatments. The years between were okay except for the numbness underarm, armpit & around the back to the shoulder blade.  Now I have shooting chest pains, that I thought were heart attacks.  I went to a breast cancer surgeon, and she said that it was from the radiation years earlier.  I asked her if the pains should be as intense, & stabbing as I am experiencing. She said yes.  In addition I now have an almost constant dull aching from inside and also behind the breast. I have had the shooting pains for 2 years now.  

I have had a coronary angiogram (normal), then on the 24th I am having a pulmonary function test.  My Internist believes there is radiation damage to more than the breast. I constantly have to remind myself it's not heart but radiation damage from somewhere. I am thinking positive for the pulmonary test.

I will second "best of luck to all" and a sunny day tomorrow.


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Feb 17, 2014 11:27PM Nettie1964 wrote:

I would like to add that after reading this thread, I didn't come across anyone who used the protocol that my RO used to protect my skin. 

He was very adamant about using cornstarch powder and only that during treatment. I complied and sailed right through, no skin issues at all. Once done, he recommended an ointment which I used liberally even though there were no.issues.  And with that, I had NO skin issues at all. 

My issues come from the damage done inside and I'm still having them.

Just want to clarify here that I did NOT have two dx! Just once I was done with chemo, the MO said I was 2% ER+! No longer taking Aromasin Dx 12/12/2012, IDC, Stage IIB, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 12/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 3/14/2013 AC + T (Taxol) Dx 8/12/2013, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR-, HER2- Radiation Therapy 8/25/2013 Breast, Lymph nodes
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Feb 18, 2014 12:10AM Barbarella60 wrote:

Nettie, I used two specialty cremes for radiation burns that really helped. I didn't have serious burns from the treatment, just tender burning. But I have always been advised not to use deodorant after the cancer treatments.  I have found 100% cornstarch works great as a deodorant and all body powder.  I can't live without it. It's one of the greatest things invented.

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Feb 18, 2014 12:10AM Stenokim wrote:

My rad onc said I was a hard case, so he polled four partners, 2 said get rads, 2 said no.  I went with the ones that said no rads.  also did not do chemo, MO said I would only get 1% benefit from it.  Started tamoxifen about a month ago and so far so good.  No side effects for me.  

Dx 12/12/2013, IDC, Right, 2cm, Stage IIB, Grade 1, 1/12 nodes, ER+/PR+, HER2- Hormonal Therapy 1/30/2014 Surgery 12/18/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right

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