Visual exam of treatment area

Options
14Louise
14Louise Member Posts: 2

I was diagnosed with Stage I anal cancer in March. Don't have to do chemo. So far I've had four radiation treatments out of 28.

Here's my question: The radiation oncologist wants to examen my genitals and the skin around my anus every Wednesday. I knew he would be looking at my skin, but I thought that meant the skin on my hips, belly and lower back. On Day 2, minutes before my turn on the radiation machine, he made clear which skin he had been talking about. So I let him know that after just one day of radiation I was fine, that I would certainly let him and his staff know when it gets to the point that I need help. I understand that radiation can cause very serious damage to that part of the body and that preventative healthcare measures are important. 

He flipped out. He said he needs a base-line of the color of my genitalia so he'll know when the color changes. I asked if a change in color would require a change in radiation treatment? No. Would there be anything prescribed or special home care recommended based on color change alone? No. I was in tears of frustration, exhaustion, and shame before it was all over. And THEN I did the Day 2 radiation treatment. 

When I hired this guy I let him know that I am a survivor of sexual violence, that it is very important that I am given lots of warning about exams and buckets of information about what he needs to do and why, and time to digest it all. 

I refused the exam, but next Wednesday's coming up and all this stress can't be good. So I guess I'd like to know if other people had the folds in their vulva probed weekly by thier radiation oncologists. Is this "standard of care?"

I dont have any problem with a needed examination. I have a HUGE problem with an exam bieng forced on me when I don't see a need.

Thank you so much.

-Louise

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Options
    Louise

    My rad onc checked my skin once a week.  He looked at my pelvic and anal area and inner thighs--no close inspection of my genitals.   I can understand your reluctance to have these exams, but I must also say that it'standard practice to check on the condition of the outer skin weekly.  Some burning is to be expected, but if a rad onc sees that the skin is burning too much, sometimes a break in treatment is recommended.  I'm not defending your doctor, as I don't know his purpose for these intrusive exams.

    I wish you all the best with your treatment.

     

     

  • 14Louise
    14Louise Member Posts: 2
    Options
    mp327 said:

    Louise

    My rad onc checked my skin once a week.  He looked at my pelvic and anal area and inner thighs--no close inspection of my genitals.   I can understand your reluctance to have these exams, but I must also say that it'standard practice to check on the condition of the outer skin weekly.  Some burning is to be expected, but if a rad onc sees that the skin is burning too much, sometimes a break in treatment is recommended.  I'm not defending your doctor, as I don't know his purpose for these intrusive exams.

    I wish you all the best with your treatment.

     

     

    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

  • jcruz
    jcruz Member Posts: 379 Member
    Options
    Louise

    It was either the first or second week when my rad onc. started doing weekly exams.  I understand given your personal history of abuse that this could be very traumatic for you.  

    Frankly, I looked at that part of my body as little as possible for many months so I had to depend on her to check the burns and the degrees to which they changed over the weeks of treatment.  Her exams helped her in prescribing various ointments as I progressed through treatment.  I think they also informed her questions about how much pain I was experiencing and what dose of pain medication would be best at that point.  It was a quick exam and for me less of an issue than the daily pulling down my pants for the radiation techs to do their work.  I believe that a weekly exam is part of the treatment plan.

    Would it help you if a female member of his staff stepped into the room for the exam?  My surgeon always brings his assistant in when he does an exam.

    I hope things go better for you this week.

    Janet

  • judyv3
    judyv3 Member Posts: 143 Member
    Options
    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

    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.

  • qv62
    qv62 Member Posts: 434 Member
    Options
    14Louise

     So sorry you have been put in this situation but I will tell you that my radiological oncologist saw mw every week for a skin check starting one week after radiatin began and every week thereafter, Special attention was to the vaginal area as it was much worsely (not sure if that is an actual word) burned and affected than the rectal area.

  • mp327
    mp327 Member Posts: 4,440 Member
    Options
    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

    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
    mxperry220 Member Posts: 493 Member
    Options
    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

  • pializ
    pializ Member Posts: 508 Member
    Options

    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

    Examination

    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
    nicotianna Member Posts: 209
    Options
    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 

  • RoseC
    RoseC Member Posts: 559
    Options

    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

    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.)

  • sandysp
    sandysp Member Posts: 868 Member
    Options
    checks by physician(s)

    My skin was checked every week and sometimes by two different doctors, my Oncologist (who was female) and my Radiologist (who was male). Plus, my husband was in the room and he looked too.

    I really just meditated through the whole thing. 

    Meditation helps with all of this. 

    I understand about being the victim of sexual violence. But sexual violence is violence. What you are getting is care. Good care.

    When we are depressed and anxious our unhappiest memories can surface. Does your treatment center have psychological care? I found help for some of the psychological fallout from my care right where I am treated. It is good because they focus on cancer survivors and our issues that stem from the treatment and other factors.

    You are going through a trying time but in this time, get the best care you can and try to say some sort of comforting mantra while they take the quick peek that is required to make sure the treatment is doing what it is supposed to do - no more, no less.

    Good luck,

    Sandy

  • LaCh
    LaCh Member Posts: 557
    Options
    examinations you don't want

    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.

  • knolltop
    knolltop Member Posts: 56
    Options
    Louise

    Louise, I too, was checked weekly.   There came a time when I was in the hospital for my last round of chemo and I asked a nurse to look because I was in so much pain.   As Sandy, mentioned it is good care you are receiving.   I too was abused as a child but got help and have healed from this sad part of my life and have forgiven the person.

    It may be good to request a female doctor....it may help you in this situation.

    tory

  • knolltop
    knolltop Member Posts: 56
    Options
    Weekly Exams

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

  • LaCh
    LaCh Member Posts: 557
    Options
    knolltop said:

    Weekly Exams

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

    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.

  • nicotianna
    nicotianna Member Posts: 209
    Options
    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.

    weekly exams

    Agree with LaCh!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Options
    Empathy

    I was sexually molested when I was 8. It was only three times, but it colored my life for decades. Since I hate Sgt. Skippy anyway, I choose to blame him for the HPV infection, too.

    I was also checked weekly and more often when my skin was bad. My first exam was on the 7th day following the commencement of radiation as it was "exam day" when all patients were checked. My radiation oncologist is a big teddy bear (definitely NOT-NOT-NOT a Sgt. Skippy) and there was always a nurse or radiation tech there. One of the techs was a male, by the way, who regularly saw me with pulled down undies and occasionally when the MD checked my skin. Again, he was no Sgt. Skippy, but a matter-of-fact professional. It's an embarrassing place to have cancer as it is, but I am to the point where I'm only thinking about it as a biological function and not a sexual situation.

    During this embarrassing and stressful cancer process, maybe you can find a professional counselor to talk to about this, as a brush up? It will help you feel better. I never told anyone until I met my husband as an adult. He urged me to call the police department to report the assault. The dectective was extremely empathetic and regretted to have to tell me, but in that state at that time, there was a 7 year statue of limitation on child sexual abuse. I never saw a therapist until I was in my late 20s and even then, it took many years to feel fairly free of Sgt. Skippy. I hope you will one day feel free of your "Sgt. Skippy", too.

    Virtual hugs and chocolates.