Visual exam of treatment area

14Louise said:

mp327

OK to ask you a question? Did your weekly checks start at Day 1?

Did the rad onc find anything you wouldn't have found yourself?  I mean, were you involved in it at all? I would think that we would be the first to know if we were burned. No? We need the doctors to tell us that we're burned? I would think that once I know I'm burned, I would ask the doctor to look at it.

I feel like if I had severe Down Syndrom or something, and couldn't communicate, the way they handle my health care needs would be exactly the same. I might as well be unconcious. 

Thanks for letting me know your experience, mp327. It helps. I didn't imagine this really was standard. I don't have a problem with needed exams, just exams that aren't needed. 

-Louise

This is such an emotional issue, especially for you with your history.  I was told that I would see the radiation oncologist once a week.  They never mentioned skin checks.  From reading on this forum I found that most people had their skin checked way more than I did.  My radiation oncologist only looked at my skin once, I think, and that was at the very end and the radiation techs were becoming concerned.  I had a nurse practitioner look at me once because I had gotten a blister in my vagina and I was concerned.  SHE was very nice, but I never got a feeling that she knew what she was doing.  As much as I did not want anyone looking at my "nether regions", I think I would have been okay with someone checking a little more often at the end.

However, I do understand that this is really not your point.  And I did have a similar experience just prior to treatment starting.  I was told I should go the gynecologist for my annual exam just to be sure there wasn't anything else going on.  I did not know that this meant I would have a colposcopy (cervical biopsy).  I lost it, refused to undress, sobbed.  Eventually, I had it done.  I asked why it was necessary and the doctor said "this is the last time we'll see your vagina in this pristine condition".  Again, I was furious, told him he needed to choose his words more carefully.  I don't look forward to seeing him again.

You surely have the right to say no and switch doctors if that's a possibility.  But perhaps it would just take a conversation with the doctor and let him know what is acceptable to you.

I am sending you a virtual hug because I remember how overwhelming the early part of treatment was.  I hope that you are able to work things out with your doctor.  You don't need added stress.  Take care.

14Louise said:

mp327

OK to ask you a question? Did your weekly checks start at Day 1?

Did the rad onc find anything you wouldn't have found yourself?  I mean, were you involved in it at all? I would think that we would be the first to know if we were burned. No? We need the doctors to tell us that we're burned? I would think that once I know I'm burned, I would ask the doctor to look at it.

I feel like if I had severe Down Syndrom or something, and couldn't communicate, the way they handle my health care needs would be exactly the same. I might as well be unconcious. 

Thanks for letting me know your experience, mp327. It helps. I didn't imagine this really was standard. I don't have a problem with needed exams, just exams that aren't needed. 

-Louise

My skin checks began during the 2nd. week of treatment, if I remember correctly (it was 6 years ago, so forgive me for not having a clear memory of it all).  I really do think, based on the other comments made, that weekly checks are done as part of the treatment protocol.  Radiation burns are so much more than just a sunburn, as some of the literature describes them.  It's burning on the outside and the inside.  I, personally, would not want a doctor to NOT keep a close watch on my skin.  Severe burns can lead to infection and all sorts of problems. 

I don't think any of us disagree that this can be traumatic and humiliating and my heart goes out to you.

mxperry220 said:

Examination

I was examined weekly during my 30 radiation treatments.  Yes it was embarrasing to have someone looking at my private areas but I realized the doctor is the professional and must note any change in my skin before it got to the point of possibly being hospitalized or maybe the radiation dosage might not be strong enough.  I well remember in week 4 of my radiaion treatments the radiologist was performing my weekly exam and got quite during the exam.  I asked him what was wrong.  He commented he was not seeing what he expected.  I asked him what that meant.  He said it could be one of two things either my skin tissue was extra healthy or he was not administering a strong enough dosage of radiation.  In week 5 of my examination he saw what he expected.  My anal area was "sunburned" as he expected.  He said I had extra healthy skin tissue and this helped minimize the "burn" from my radiation treatments.  The last two weeks of treatment were the worst for me.   I have been NED since 2009.  Hope this helps some.

Mike

Hi.

My skin was examined weekly from werl 1. I started treatment on a Monday, and my weekly review was on a Wednesday, when I saw my oncologist. I empathise with your desire to control the situation, but this is one occasion when I have just given my trust to those who know better than me. Yhey know what they are looking for, including knowing what your unradiated skin looks like initially & observation of initial subtle changes through to however burned your skin becomes. I was one of the lucky ones who did not burn excessively compared to others. But it is not a walk in the park, & I put my dignity on hold for treatment & examination times. I really don't think thrre is a way around it. 

I wish you well, & remember, this part of your life will soon be history. Thankfully the treatment is of relative short duration. 

Liz

nicotianna said:

visual exam of treatment area

Louise - My radiologist checked my pelvic area before treatment.  I cannot remember if he checked me again.  I saw him weekly & shared any problems w/him.  I was very happy with my care & very happy not to go through unnecessary embarrassing exams.  My only issue w/him is that he never discussed a vaginal device to prevent stenosis.  That is not an issue w/me but I think it should have been discussed.  It is your perogative to refuse his weekly physical exam.  He can jot that in his notes & he would be covered legally as far as I know.

Nic 

My experience was much like nicotianna's. Actually, I don't remember him even checking my skin prior to radiation. But during radiation it wasn't checked (except prior to the 'boost' at the last week - and then it was only the anal area, not the vulvar area). Although I didn't miss the exams, after reading what kind of monitoring others have had I think a few more exams may have been useful. I was not thrilled with my radiation oncologist. Maybe it's a good thing that yours is more thorough. (Although I do sympathize tremendously with your reason for not wanting the exams.)

Refuse. You're in charge. Tell him that you'll allow his nurse or tech to look, without him in the room. He works for you, not the other way around. You call the shots. He won't like it, but he can lump it.

Sorry you have to go through this upsetting situation along with treatment. 

LaCh said:

weekly exams

Assessing radiation burns is medically required, but you get to choose who gets to look. If you aren't comfortable with the doctor, you get to say "no." Get his nurse to do it. Get his tech to do it.  I had my own reasons, different reasons, different situation, but the reasons aren't important.  Two weeks in, I said, "that's it. You're not doing these exams any more." And he didn't like it, but he didn't have to like it, and I didn't really care.  The treatments are enough to deal with. Submitting to examinations performed by someone who you're not comforatble with for ANY reason doesn't have to be one. You have a choice. But you have to speak up and say, "no." "Yes to the nurse, and no to you."  And you don't have to give a reason and you don't have to offer up an apology. You simply have to state what you will and won't allow.

Agree with LaCh!