Having another meltdown

jessica13 · March 2014

Hi all,

I started radiation very reluctantly since I've had breast lymphedema following sentinel node biopsy. My radiation is in the prone position and shouldn't involve the axilla since I had clear nodes. However to avoid the lung, they have done the planning to have the beam wrap around part of my armpit - right above my SNB scar.

At the start of rads I freaked out about this and the doctor told me that it was just 'scatter' that would be hitting my scar area. However 17/25 sessions in, my armpit is extremely red and sore- more so than even my breast, and my techs confirmed that the area was within the field of radiation, not scatter.

I don't fully understand the terminology but this made me just lose it and refuse to go through with the treatment yesterday (#18). I am sick of being told conflicting things and also not being told the full story because they think I won't understand anyway or that they know what's best for me.

Whether it's rational or not, I really don't want to continue and I don't know how to broach my concerns with my doctors because 1) I don't trust them at this point and 2) they are sick of dealing with my meltdowns. \I don't have time to get another consult but I don't know what to do.

Bounce · March 2014

Hi Jessica13 - sorry to hear you are having trouble.

It is very difficult knowing what to do sometimes.

If you are having frequent meltdowns try to get to speak to a therapist with cancer experience. Obviously they are not going to solve your problems for you in a second but it really helps to understand what is going on in your own head and heart.

I have been at the meltdown stage. It was not fun.

If you can get yourself a bit calmer speak with the RO as soon as possible to clarify and tell him you feel you were lied to and are concerned about the lymphedema.

It is an issue for many women after radiation and is not something that should be overlooked by the RO.

Do you feel that the lymphedema is worse since starting rads?

The RO should be available to you to discuss any problems you are having. Don't worry about asking to see him or what he thinks - do what is right for you.

Sometimes I found the radiation nurse more helpful.Sometimes I wished I had never spoken to her.

I can't see your diagnosis and in any case I have no medical training so can't offer advise about stopping or continuing rads.

I just think your concerns are valid. Meditating before speaking to my RO helps me be more calm. I decide on what questions I must have answers to and try not to leave until they have been answered. Not easy for me by any means.

Deep calming breathes.

My brief therapy helped me a lot with how I deal with doctors.

Gentle hugs

BrooksideVT · March 2014

Whatever you do, do not walk away now--Neither have any remaining cancer cells yet been eradicated, nor can you ever have rads in that area again.

The radiation field can be modified, although this might not be the best long term strategy. You need to talk this out with someone on your medical team, and you need to do it now. If you do not feel comfortable with your RO, bring someone who with you, or write your conerns, or ask to speak with a different RO, perhaps the head guy, or demand a team meeting--RO, tech, physiologist, lymphedema therapist, etc. Right before your next scheduled treatment is an ideal time for this. That way, if they need to re-tool your field, you will not be sidelined longer than absolutely necessary. You can either call in advance, or just show up a little early and ask to speak with the doc.

I found I was more than terrified of rads. I was actually horrified. The head of the techs was a tremendous help--his job was to solve problems and he walked me though all the steps, explaining exactly what was going on, and why. It seems I had a lot of preconceived notions about how my body would be damaged, and they were mostly just notions, not reality. It really is true that healthy cells (your lymph system,for instance) are clobbered right along with the cancer cells, but those good structures heal; the cancer cells do not.

Because of its powerful beam, there is no scatter with rads, but the field is designed so that certain areas receive more radiation, and some receive less. It seems neither your RO nor your techs explained this particularly well, but if you give them a chance, I think they'll make you feel more comfortable.

Binney4 · March 2014

Jessica, how did it go today? Were you able to talk to the techs and get a clearer idea of how to proceed? I was terrified of rads, never did get over the fear, but I did manage to keep at it. The fear is real, but so many women talk about rads being "a piece of cake" that I felt intimidated to be having so much trouble with it.

I had to take several days off at one point to do some tests because of unexplained pains I was having, so I know it's possible to take a day or two off and still get the benefit of the treatment. I'm hoping you'll get the explanations and assurances you need to proceed with confidence. The anxiety is so paralyzing--I had to make myself a chart with boxes for each treatment still to go, buy myself a set of beautiful stickers, and put one sticker up every time I completed a treatment, just in order to visualize that I was making progress toward getting through it. Maybe that sounds impossibly childish, but there's no shame in doing whatever's necessary to boost your courage. We're sure here for you!

Gentle hugs,
Binney

jessica13 · March 2014

Thanks for your responses guys, I have been a basket case the past two days! My radiation center is bearing the brunt because after diagnosis, I had surgery, started chemo, had to transfer jobs, sublet my flat, move from London back to the US on Xmas Eve, navigate culture shock, insurance nightmares and the worst winter ever before starting rads. I have only recently gone off autopilot so am not that surprised the tears are catching up with me and while I'm trying to be less of a crazy person I am also trying to not feel guilty about it!

@Bounce- I did start going to a therapist that specializes in cancer and she rightly advised me to treat my dr's appts as I would a business mtg, but easier said than done. I am emotional because I am always being rushed, don't feel that I have been given enough info to make a decision and am just supposed to blindly accept the doctors' wisdom, when often their opinions are contradictory. That doesn't sit well with me and despite everyone saying 'at least I have a choice' about radiation or mastectomy or nothing, they all really suck as options! Acceptance is supposedly one of the stages I have to go through but mutely accepting and trusting what they say feels like being defeated.

@Brookside & @Binney- I emailed my RO this am because with chemobrain I need to have things written down to digest them. The doctor called me from her vacation abroad and was super pissy with me for not understanding that they aren't radiating my nodes. She said that I didn't understand basic anatomy and that there was no way to avoid radiating the area of my SNB scar if she was to radiate the full breast, but that my axilla was getting no radiation beneath the skin.

She is the chair of the department and said everyone in her team argued that my nodes needed to be radiated since I am 35, had aggressive disease, etc and that she did me a favor by avoiding the axilla. This is why I don't trust her - I had clear sentinel nodes and no vascular invasion, there is no evidence to support radiating my axillary nodes, confirmed by multiple doctors in the UK. She also said that having had only 2 sentinel nodes taken out could NEVER be responsible for breast lymphedema and that it was my surgeon's fault for doing oncoplastic remodeling. Reason #2 I don't trust her; my surgeon said I had a 5% chance of arm LE from the SNB, so I think it would be just as likely if not more so for breast LE.

It is totally possible that I am just incapable of processing anything right now but I am so sick of doctors and their dismissiveness. I suppose since I had LE before I have to focus on getting through this without exacerbating it but it isn't easy. It hurts to wear the Jovipak now and I feel so swollen and tender and gross.

Thanks for letting me vent!!

TB90 · March 2014

Hi Jessica: So sorry that you are having such a difficult time and on top of all of that, feeling like you cannot trust your doctors. I just completed radiation last Thursday and although I am not having rads to my nodes as my dx was DCIS, I too have a very red and sore armpit. But it clearly starts below the nodes. I too have worried about this affecting LE as I do not have any and would hate to get it from radiation. My RO stated very clearly that there was no risk of LE from the rads I was receiving. It does seem difficult to imagine given the sore armpits. Hope they are right and after 25 radiation treatments, even though I am extremely sore and uncomfortable and testimont to the fact that skin can continue to worsen after treatment, I have absolutely no symptoms of LE. So maybe they are right. When they give out inaccurate info though, it becomes very difficult to trust anything they say. Good luck with the rest of your treatment and try to focus on the huge reduction in recurrence rate that you are getting out of all this.

BrooksideVT · March 2014

Well, no wonder you're having meltdowns! It would be pretty strange if you were not. And itsn't it lucky that you have a real pill of an RO to "help" you process all that turmoil.

It seems she's clarified the treatment field a bit, which must be a relief, and that she backed you and not the other docs on the lymph node issue, which is good. Warm and fuzzy, however, she ain't! Someone at your center can sit down with you tomorrow and go over (and, if necessary, over and over) all your concerns, in particular the lymphedema issue, which certainly needs clarification. Believe me, you are not their only current patient with significant issues.

I'd also suggest digging in your heels (and heals!) and taking all the time, and all the docs/techs/nurses/whatevers you need to work through this. it really is important that you complete treatment, and equally important that you understand exactly what is happening, and why.

Having another meltdown

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