Radiation regrets?

marjie

I don't regret ANY of my treatment.  I REGRET CANCER!!!

SelenaWolf

I have no regrets whatsoever.  It's brought great peace-of-mind.  I tolerated it well; healed fast; my heart wasn't in the "... line of fire..." and - since I was back to hiking 20 miles per week and biking an additional 20 miles on the weekend within six weeks of finishing treatment, I can't say that I'm suffering from any after effects.

The risk of developing a new cancer (i.e., radiation-induced angiosarcoma of the breast) from radiation is just a rare as developing endometrial cancer as a result of taking tamoxifen... > 1%.  Sure, it can - and does - happen, but it's very, very unlikely.

wildrumara

I would get another opinion, but the only thing "negative" (so to say) is that you are triple negative?   You responded wonderfully!!!!!!     Do you know if you have LVI (on path report)??  ..sometimes the ROs look at that when they are deciding about radiation (at least they did in my case). 

I have been dealing with the "to radiate or not to radiate" decision for several weeks now and have done waaaay too much research and reading on this subject.    I have decided not to, after two opinions......one said yes and the other said no. 

My plastic surgeon was the one who recommended two opinions.....his reason was " most ROs like to radiate".....much to my surprise, on my first consultation, he did  not recommend it for me.  Risks outweigh benefits......of course, the second consult, they gave me stats to my benefit.   UGH!

But, why is it that when we make a decision "NOT" to do something, we feel as if we aren't being active in the fight.  I think that there is so much more to healing then the medicine.....sometimes you have to trust your doctors and believe that you will recovery fully and sit comfortably with our decisions. 

That's where I am right now.   Good luck and let us know if you decide to get another opinion and what he says......!

ali68

Adgirl5 my friend on here who is stage ll gade 3 has just been told she won't be having rads

elimar86861

I did get fatigued, but feel fortunate that my skin held up well.  It took over a year for coloration and softness (sag!) to get back to normal, for me.  I was very concerned about collateral damage to internal organs, lungs and heart, but I got lucky there too.  I've had a regular xray of my lungs, and the treatment side looks the same as the untreated one.  Radiation did not exacerbate any LE for me. 

Because I was one of the lucky ones, I don't regret rads.  BUT the whole idea was to avoid local recurrence, so if I end up getting that, down the road, I can tell you I will have the max regret one can have.  We'll see.

SelenaWolf,  You sound as if you very very fit going into rads and/or younger than the average B/C patient.  I was wondering your age?  If you don't want to list or generalize the range on this thread, could you respond in a PM?  Just curious?

Infobabe

I want opinions on this question too.  I am 76 with pale skin.

Home again.  Had the test to see if the baloon was properly seated for the seeding and it is not.  It is too close to the surface so Mammosite is a no go.

New choices: Partial breast radiation, like a mammosite from the outside taking three weeks.

Whole breast radiation for 5 weeks, both of these once a day, 5 days a seek.

Mastectomy

And I am thinking, not the doctors suggestion, doing nothing based on the pathology report on Friday.  After all, it is DCIS stage 0, grade 1.

 Had the spacer balloon and catheter taken out today which is a relief in itself.  I had my first sponge bath today, doable but cold.  Don't have to do that anymore.

Got to do more research.  Wonder what no further treatment would mean.  My poor left breast has been radiated all to hell starting with a needle biopsy 8 years ago to this seies maybe making more mutations.

Grrrrrr.

bdavis

I have a friend who was diagnosed same time as me, with DCIS (multiple scattered pattern). This was Nov 2010... She had a UMX and called it a day. Yesterday she had surgery to remove a large tumor from that MX breast. She had her implant removed along with a tumor that was visable from the outside... It is now in her nodes and she needs chemo and radiation. So... of course I wonder, had she had chemo or radiation in the first place, would she even be in this situation. Sometimes I think DCIS is UNDER treated.

FilterLady

No regrets for radiation treatments here.  My underarm got a pretty good burn and then peeled aroun#27 of 35 but it wasn't too uncomfortable.

Now everything is getting back to a "new" normal.  I saw my MO today and all is good.  I'll return in 4 months!

God bless y'all!

elimar86861

infobabe, 

Many times DCIS women don't even get rads, especially if they chose Mx.

Many times over-70 women don't get rads, especially if they had ER+/PR+, a slow growing tumor pathology.  

Who advised rads for you?  I seriously would get a second opinion.  Ask what it is supposed to accomplish for you?  

Despite the incident bdavis mentions, I would need to understand the reasoning behind radiating a "non-invasive cancer" myself.

p.s.  infobabe, Like yourself, I also was a balloon catheter failure with the balloon ending up too close to surface skin.  That balloon really hurt too, and I had to resort to meds with codeine the few days I had it in place.  I really don't know if I could have worn it another 5-6 days. I ended up getting 6 wks. WBR.

Infobabe

Thanks for that.  I don't know why I was not notified of your post so I am glad you PMd me.

 Sleeping does clear your head.  According to a Time article, we do a lot of thiking while we are asleep that comes up with clear, creative solutions to problems.

That sounds like good advice to me. I will store it in my memory bank to spring it on the doctor tomorrow.

After the balloon failure, did you have any further treatment?

Infobabe

That sounds like a complicated case to me.  She had a mastectomy for DCIS (what grade?) and the cancer came back?  Was this a new type of cancer because DCIS is non invasive.

lilylady

I so regret the Rads. I was Stage 4 from the get-go but would not let them take any nodes. That was part of an agreement that I would do Rads if I opted for no nodes. I was too scared of lymphedema. Besides knocking me on my ass fatigue wise-something that full fledged chemo DID NOT do-and burning and scarring my already ugly BMX chest I got what is called Parenchymal Banding. They fried 1/3 of my upper and middle lobes of my right lung. Either too high a dose or bad shielding. My mets are mostly in my lung so it really pisses me off they took away something I might later need.

  Of course the Rads guy insists that they were not responsible for the banding-I might have other issues causing it--Liar liar pants on fire!! As a Stage 4 I get scans every 3 months-first scan after Rads showed clouding second scan confirmed profuse banding. Onc says dont worry be happy.

  I think it was a high risk low rewards option-it will take a lot of talking before I ever agree to any type of Rads tx again-or ever see that doc again. Worst experiene of any of my tx.

bdavis

Infobabe... Not that complicated... She had DCIS that was all over the breast in multiple areas (like a splatter effect) so she had a UMX... but my guess is that with the MX they missed some tissue that had more DCIS... Over the past year and a half it must have become IDC and spread to her nodes... OR its a new primary... this tumor is Her2 pos... before it was Her2 neg. Either way, it stinks.

SelenaWolf

elimar ... I am 51 years old, but have been active- and athletic all my life.  I was involved in numerous sports as a child - figure skating, field hockey, soccer, baseball, swimming - and developed a passion for middle- to long-distance running in university (great stress reliever and "wrote" a great many papers in my head while running), which I continued until about 10 years ago.  My hips gave out, so I switched to cycling; less impact, but still excellent exercise.  I've, also, taken up dressage and jumping in recent years.

I just about went APE during treatment because I was too tired to pursue my usual, physical activities and - as soon as I felt strong enough (about 3 weeks into radiation) - I started walking with a friend.  I couldn't go far at first and, every night, I cried because my feet hurt so badly from the neuropathy.  But it was either that or stay home and GO NUTS!!!!  So, I kept walking and, eventually, worked up my hikes to 5-miles at a time, three- to four times a week.  Now that the weather is nicer, I've added a weekend bike hike of 10- to 20 miles.

Interestingly, about week 3 of walking - when I was doing only a few miles at a time once- or twice a week - I noticed that my feet stopped hurting and the neuropathy was gone.  Poof!  It seemed like overnight.  I've been wondering if it was the activity, which increased my heartrate, which sped up my circulation, which - possibly? - helped clear out the drug deposits causing the neuropathy.

Just a thought...

ruthbru

Very possible. If you keep moving during treatment (rads and/or anything else) you will do so much better; both physically and mentally. Plus drop your risk of recurrence considerably.

msmpatty

I'm almost exactly two years out from rads and don't have a regret in the world..  I admit to having a very bad attitude going into the rads.  But everyone was kind, extremely efficient, my very pale skin did just great (Miaderm, Emu Oil), and when my rad-tan faded after a few weeks the "X" marks the spot scars from my extensive lumpectomy were virtually invisible.  Much better than pre-rads. 

By the way...my Rad Onc told me the color of your skin matters less than the size of your breast when it comes to the skin effects of radiation.  Large breasted dark skinned women can have more problems than light skinned smaller breasted gals.  Not sure why.

Patty

elimar86861

Hmmm, I have not heard the "size matters" correlation before.  I wonder if the "make-up" of breast tissue plays a part in that.  Often a smaller breast has a lot of dense, glandular tissue.  Larger breasts contain more stroma and adipose tissue in ratio to the glandular tissue.  Maybe it is something about the overall density of the breasts.  It seems that RO's should know about all that by now, though, and have even figured out ways to compensate, or deliver the rads treatment, that the women would not have to blister up like that. 

SelenaWolf,  It is definitely a plus if you are fit and active going into the treatments, and the quicker you will be to resume activities.  I am more fit now (from walking and biking, and free weights) than I was going into rads.  So, guess I am saying having rads did not prevent me from getting healthier than I was before.

Chickenpants

No regrets so far. I had two primaries - one each side with lumpectomies. All three tumors tiny, with largest being my invasive side 9 mms and no lymph involvement. I just finished 16 tx for each side plus five boosts (50 gy plus 50 gy and 16 gy boosts) yesterday. Other than being fair skinned and having an expected hive like rash with my redness, the cracked nipples are a little painful at times. Healing up tho with my prescription meds. No radiation related fatigue. This is surprising since I suffered an unrelated subarachnoid hemorrhage ten days after my second surgery on January 5th. I am continuing to cycle, walk or hike at least an hour per day. Have to watch arm movement as both armpits are tender from rads.



Next dilemma is adjuvant therapy as my bleed risk has now changed due to my SAH.

Chickens breast are cooked. Stick a fork in me I'm done!

BLinthedesert

Regarding recurrence from DCIS after MX.  You can't take out ALL breast tissue -- breast tissue (and ducts) are interwoven with the muscles of  your chest.  The only MX that can totally remove ALL breast tissue is a radical MX - which is not done often (for good reason - it is horribly disfiguring and leaves you with hardly any muscle left on your chest or arm).  DCIS can - and does - evolve into invasive cancer (they just don't know when - and for whom, unfortunately).

I am so sorry to hear about your friend bdavis ... I guess that is why I am opting for radiation -- even though I actually felt ok about a 20% chance of recurrence (of DCIS -- not invasive disease) because I so wanted to avoid it. 

bdavis

BLinthedesert.. Thank you.. I think its wise to get the radiation if you haven't had any other treatment... I had chemo, so skipped rads.

fragrantroses

I have some regret and then no regret.  I felt that I had to have the rads.  The BS removed tissue all the way to the fascia and there were still microscopic cancer cells at the margins. I had chemo first in 2010, a BMX early 12/2010 and rad began on 1/2011/

My regret is that I did not have the PS push the fills before the rads started.  I think I could have handled the fills to my desired size and THEN did the rad.

But I am one of those people who didn't just burn.  I'm light skinned and my skin literally melted away, leaving the whole region raw, oozing and incredibly painful.  Even my RO's were shocked by the condition of my skin and changed their schedule of rads....they switched to boost for a week to give some skin time to grow.  Those days were absolutely wretched.  Yes, I was exhausted, but the pain was continuous from day 21 - 33 rads and several weeks of recovery.  Percocet, valium and ice packs were my best treatments.  The nurses coated silvadene cream on telfa pads to cover my open skin, and a RO looked me over every other day to check for infection.  I developed cellulitis on day 3.  I had a lot of pain from the reconstruction, the TE's caused nearly continueous muscle spasms for nearly 6 months.  So being radiated on top of all that...was difficult.  My experience was that even though I was one of the 20% who have severe muscle and joint pain with Taxotere, I still believe that rad. was SO much more difficult.  Having to lie on that flat table with my right elbow in my left ear sometimes put my right arm in such spasm that I could not lift it or move it.  My dil had to help me redress.

Then I had to wait at least a year before my PS would even consider continuing.  I waited for 14 months anyway, and saw  PT periodically.  She taught me stretches and massages to help with the fibrosis.  I'm not sure what cording is, but I have a feeling that is what caused the rad TE to start climbing up toward my neck.  The PT said it felt like I had a strap from the bottom of the TE to my shoulder.  She got it to release though.

So I have had 2 fills now 60 ccs each time.  The first 24 hours are kind of painful but then it levels out and reaches the steady difficulty and tightness I have in the rad side.  I'm hoping when the PS does the exchange he can release some of these adhesions and scar tissues.

 So while I felt I had to get the rad so I would know I did everything possible to kill this monster within me, I was totally unprepared for the continuing difficulty.  I'm  nearly 15 months out from that last tx.  My whole family celebrated that day with me.