Afraid to do radiation but feel I don't have a choice

BLinthedesert

Maria, I am responding to your post, without reading through all of the posts.  I just wanted to tell you that I had radiation last year (I think my "start" anniversary was this week) -- I just ran a marathon two weeks ago and PRd (I ran a 3:19:15, first 50 year old across the line).  I was extremely afraid of the side effects, and what impact these would have on my running.  My RO was super about making sure my lung was minimally hit (even though they were shooting pretty close to my chest wall).  I am so happy to say that while it did take me about 5 months to run as much as I did before my diagnosis - I ran through treatment, and was super excited to see that I was back to full training within ~ 5 months.  

Best of luck to you!

Anonymous

Happy, Happy Weekend Everyone.  Peace, prayers, love and blessings!

Anonymous

Hi to all and prayers to those who are needing them.  What is going go with me the last 3 days?  I wake up in pain; fingers, elbows, feet, legs, hips.   Should this not be over by now???  I took last chemo and shot on May 1 & 2.  Woke up at 4:39am really hurting.  Forced at this point to take a Dilaudid as the pain is bad.  Guess it is best to call them MO in a few hours and see if this is just more residual SEs from that last chemo, I guess.  Feel like I need a total body massage and then some.  Suggestions/thoughts Sisters?  Ouch, ouch, ouch!

sciencegal

CM-I hurt for a long time after chemo, still have hip pain and numb toes. My nurse said chemo takes us right to the edge of what we can tolerate and then yanks us back before we drop over the cliff. I guess it is amazing we can heal from it at all!



I sure hope your pain subsides and you can take it easy until then, and that you have some good meds!



I am starting radiation on June 17th, I am with you maria, scared and concerned. I have to do it though because my tumor was really huge before they found it- 9 cm. yuck!



Cyber hugs and healing thoughts to all.

Lin43

Hello to all who are starting rads in June. Come join us in the "summer 2013 rads" thread.  I just finished number 11 of 30...I have some redness, tightness, and itch. I am getting the bolus daily to bring the radiation to the surface so my RO said to expect more skin reaction. I still scream inside sometimes when I am on that table but then I think about how this can further reduce my risk of a recurrence and I calm down by visualizing an angel wrapping her wings around me. 

cmbernardi and sciencegal--I still have some pain and numbness from chemo as well and I finished the end of February. My center has recently started offering acupuncture so I have just started that to see if it can help with the numb toes.

See you on the summer 2013 rads thread....

Gentle hugs,

Linda

Anonymous

Lin43m - thanks for your comments.   see you on the summer 2013 rads thread soon..I start on June 5 for 3 weeks.

raspberry

I was told I am pretty much guaranteed lung scarring, and being a very socialable person I just nodded along and signed the dotted line. But afterwards I started wishing I had asked way more questions and I only usually get to see each of these medical people once or twice and then you start with a new person.

I am scared of radiation. I have a very low grade kind of cancer which has fewer recurrences than even the usualy Grade 1 (it is tubular) and apparently the results of lymph node dissection has no bearing on overall survival for this kind anyway. But my lymph node site hasn't healed, is still putting out pus, a month later, and there is a large lump from something else under my arm that is rock hard, and a nasty corded vein coming from it. All for nothing, as it was completely clear, as is usual for Tubular Cancer only 11.8% of people have any lymph node involvement with this kind.

So now I am going to have lung scarring and I hate sunburn, avoid the sun like anything. Tubular breast cancer, at least in a study from 1999 showed that only one out of 33 women with this kind had a recurrence - 20 had radiotherapy and 13 had none, just one that had none got a recurrence.

Is it worth it to me? Do the benefits really outweight the damage? but I am getting it anyway and am admitting I am scared, only on here, I am staunch in my real life usually.

Has anyone else been told straight up they are very likely to get lung scarring? I thought this was only a small percentage, but she said "pretty much guaranteed"?!

Lily55

I was told its common and probable but not enough to notice in lung function,

raspberry

That's good to know, thanks Lily55.

My RO was pulling faces when she told me what treatment I was getting, which made me think its really nasty. It is a shorter regime with boosts to the tumour bed, either during or added on after, one of the things I don't know.

Its stronger for the shorter duration and I really wished she could have told me it had some advantage other than using up less hospital resources with less visits (she didn't say this but I know its true). I wish I had something to find good about it. Maybe it equals less time ones skin is irritated? It seems that might be true, but I would like to know that very much if it is.

Jennt28

raspberry - yes my RO guaranteed that my lung would be hit and scarred and when I pushed she also admitted that my heart and spine would also be hit. They aim the beams at angles and the beams go right through you all the way on that angle.



They have an "acceptable level" of radiation to organs... I ended up withdrawing from rads because I just wasn't happy taking on the risks. My RO admitted that if I didn't have rads and developed a local occurance later I could have them then and take on the risks, or, if it didn't come back I will have saved myself the risks.



Jenn

Lily55

I was bullied in to rads as literally yelled at and told high risk of recurrence, they insist they missed my heart but i am now under cardiologist for heart and lung symptoms, wish id avoided them now, hated every session but the after effects for me are rough

Jennt28

So often the medical system forgets and makes us forget that we have choice in all of this....



Sorry you are dealing with the fallout Lily.



Jenn

raspberry

It didn't occur to me to say no. I can't stand the thought of the scarring, possible inflammation, cooked ribs, bone necrosis etc., 

I will be seeing my holistic GP of 30 years today and will see what she says about it.

Thank you so much for your postings Lily and Jenn. I see Jenn you had a mastectomy instead, so you are still doing the right thing with that choice, whereas if I forego radiotherapy I would take tamoxifen instead, since my tumour was 90% Estrogen and Progesterone positive. My surgeon told me tamoxifen probably wasn't worth it because the side effects would outweight the benefit for 1.7% benefit. He didn't know I was going to consider piking out of RT though.

I already lost 5 kgs and am a really good weight and gave up alcohol permanently. I think that will be a big help in preventing recurrence. 

When I saw my RO she didn't take into account the tubular cancer, and the lifestyle changes I had made - she actually just brushed over both of those things - yet according to some pamphlets these have a larger bearing on recurrence than radiotherapy.

Lily55

Thanks jenn

Anonymous

Start my RADS tomorrow and today woke up very anxious about it.  Shaking in my boots!  I feel like a kid again that knows their Mom is taking them to the Doctor,  Stomach ache and shaking inside.  I have left-side BC and soooooo very concerned about my heart and lungs.  Yikes!

raspberry

There is a mistake, which I knew about on my histology report. Making my Nottingham prognostic higher, I just realized the implication of this for the rad onc, basing at least in part on this error, so putting it all off until they sort it out. My real Nottingham score is 2.32 not 3.32, and that point makes a difference and puts me in the more moderate risk group, when I am really low.

I don't mean to rock the boat here but, considering not having rads at all. This link is to a brand new study in Italy, certain low grade breast cancers may not be given radiotherapy in the future. I so could be one of these women with my tiny score. But I am 5 years younger than their youngest women at 55, so that's a risk, but I am considering taking my chances and no going the rad way.

http://www.medscape.com/viewarticle/803563

dogsandjogs

The RA told me 6 percent of my lung would be "damaged". Also part of heart would be in the radiation field and there was the "possibility of rib breakage." He then added that he, personally had never seen rib breakage, but it could happen.

Anonymous

Oh Lord, I have got to stop reading on this thread until I get started and see what the radiotherapy is really like!  I normally do not freak out like this but I purposefully did not read a thing before my lumpectomy and chemo. and did much better emotionally with it.  Oh well, life's a bitch and then U die!

BrooksideVT

cmbernardi, please do not worry.  Most of us do just fine.  My main side effect was terror, simply because of all the reading I had done.   Your RO, the nurses, and the techs are all there to baby you through everything, and are available before, during, and after, each treatment.  They truly want to hear your concerns, and they do have the answers. 

micronancy

Raspberry, I opted out of Rads after just a lumpectomy with >1cm margins. The RO spent 3 hrs with me printing out studies similar to the one you posted, explaining the possible side effects specific to me, and let me make my own decision. Only my MO disapproved of my decision - my BS thought it made sense. Since I'm 100% ER+, I'm convinced that hormonal therapy is the way to go for me. Again, this was for my specific situation; everyone needs to make their own informed decision. But I definitely have no regrets.

raspberry

Thank you so much for your reply micronancy. You are lucky to have such a great, open RO. I haven't come across an MO yet, a medical oncologist, I wonder when I was going to have one of those?

I have massive clear margins, as well as a rare, extremely well behaved cancer called Tubular, which travels even less than the usual grade one. 

I feel I will be bullied somewhat if I say I don't want radiotherapy. Not looking forward to battling with authority, but I strongly feel my attention has been drawn to this for a reason (my lymph node not healing well has given me time to think, as well as the wrong score on my Nottingham Grade). I asked my GP her thoughts on radiotherapy and she simply said "do what your intuition tells you".  Thanks yoda!  hmmmm

I didn't want to take tamoxifen, but since I found out more about radiotherapy, tamoxifen is looking good. Gets rid of pimples for some people too I heard, still get those sometimes at 50. There is a thread on here for people that find it has beneficial side effects.

I am not up on lingo, what is a BS? 

Lily55

Breast surgeon

micronancy

Raspberry, my view on being "bullied" by doctors is that they are our employees -- we hire them for their knowledge and experience, but they don't have the final say. BC is so complicated that we need to educate ourselves, utilize all the resources available and make an informed decision that works for US. Sometimes the "standard of care" isn't the one we choose, but it's the one they are most comfortable with. It's all just statistics anyway. In fact my MO wanted me on an AI ( post-menopausal--- natural menopause at 36 ) but I told her that I wanted to be on Tamoxifen and Fosamax for at least 2 years to build up my osteoporotic bones first. She agreed, but if I hadn't done my homework, that option wouldn't have been presented to me because the " standard of care" is to prescribe AIs for post menopausal patients. So do what's right for you; you are an individual, not a statistic and then act on your decision with no regrets. ( By the way, I've worked in the medical field for years, so my view on doctors' infallibility may be somewhat skewed )

Jennt28

Everything that micronancy said! And because of what I do everyday in the oncology research industry my view of doctors is skewed as well...



Ultimately you can take control and have the right to make measured educated decisions about your own health and the level of risk or benefit you are prepared to face/accept.



I quit rads because they felt like the wrong decision for me. But then I went out and had a BMX to reduce my potential local recurrance rate... Some see that as a more drastic treatment but I actually think it was a treatment option with far less risk associated. Yes, the normal risks of surgery but there's no (or very little) risk of heart damage, lung damage or potential for secondary cancers from a surgical procedure!



Jenn

raspberry

Thank you Jenn & Micronancy!

I am understanding more, the attraction of mastectomy over lumpectomy with radiotherapy. I would go that way should an re-occurence happen.

Whew, scary as, not doing what I am told, as I am such a conformist usually. 

I don't mind surgery either. I had an abdominal hysterectomy last year, 3 months recovery, but nothing else to deal with after it. Large fibroid uterus gone. Life is so much better. 

micronancy

When I ran my pathology through the IBTR nomogram, it gave me a 10 yr recurrence rate of 7.7% without radiation (very similar to my Oncotype risk of metastases of 8 %). My RO gave me a 10% chance of radiation induced lung cancer within 10 years after treatment. So I will live with my 92% chance of not having to deal with anything BC related for 10 years without having to worry about my lungs.  If it recurs, all the treatment options, including lumpectomy, rads, and mastectomy, are still available to me. These facts weighed heavily on my final decision.

raspberry

My Breast Cancer nurse called me this morning. Among the things she said was "if I had known you would have been like this we would have given you a mastectomy".

 Is that bullying or what? I am really angry now. I feel like I have had little support, just passed along the factory line and now I get this?

Micronancy, I got 6.3% on the IBTR score with Tamoxifen. 8.3% without Tamoxifen - both scores without radiotherapy. 

AmyQ

raspberry- 

How dare she she speak to you that way as if you had no say in the decision. I would speak with your physician and express your displeasure and if you do not receive satisfaction, find another clinic.  That's outrageous!

raspberry

AmyQ - I know, its really off. And makes me even surer of my decision. I have sent the nurse an email asking her to not contact me again. 

I have a wonderful GP, who I have booked to see in a week or so, who will be supportive, I know. 

Anonymous

Well, U were all right.  My first day of RADS today was not bad at all.  I only need 15 treatments and the first one was not bad at all.  They told me no more underwire bras and no deodorant under the left arm tho for a while.  Gave me 2 creams to use 3 x daily and that was it.  Going back tomorrow at 10:30am for treatment #2.  Hope all is well with everyone and sweet dreams.

CB