One Week Rads Group

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LizzieK
LizzieK Member Posts: 67
edited June 2014 in Radiation Therapy - Before, During, and After

There have been a number of posts on various boards about the one week radiation protocol.  I will be starting it on February 19th and welcome everyone who has either experienced that protocol or is planning on it to post on this site.  Here is my experience so far. 

I had my appointments with my RO and MO this last Thursday at Mass
General (3.5 hours from where I live).  I was offered and decided to go with the one week
radiation treatment plan. Mass General was one of sites for the clinical trials.  This isn't available in my local area and is one reason I am going to Boston.  My RO said they have been doing it for years
and it will avoid radiation to my heart and other areas. I had previous
radiation to my neck almost 3 years ago for laryngeal cancer at Mass General.  I start treatment Feb 18th
and get a total of 9 treatments, twice a day at 8:12 am and 3:36 pm.
The total radiation is 30 Gy and limited to the area around the tumor.  The risk of side effects is a bit higher than the typical schedule but
one week vs six and half is worth it to me because I work.  Because of Presidents Day I can't start till Tuesday and
will finish up the following Monday morning unless they can get me in on
Saturday morning (usually reserved for emergencies). MGH has a good
rate at the hotel a couple of blocks from the campus so we will stay
there and I will be able to walk to treatments.  One week's hotel charges will be
a whole lot cheaper than the 8 weeks I did the last time (luckily my
mom helped out with that one).

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  • ritagz
    ritagz Member Posts: 29
    edited January 2014

    found you here - :)

    I work in NYC and the hospital is a few blocks away - so I am scheduled for a 6:00 evening appointment

    Are you getting a CT scan to pinpoint the cavity?

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  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    That's convenient.  My daughter works in NYC, but Boston is an easier drive for us. 

    Are you getting the partial breast radiation once or twice a day?  I had my CT on Thursday.  My surgeon put some metal clips in during surgery to mark the borders of the cavity so they can see where the tumor was.  I got a few very small tattoos at the center of my chest and one on each side, and then they scanned me.  Tattoo was like a pin prick. The whole thing took about 20 minutes.  It was weird because the room I had the scan in used to be a treatment room and was one of the rooms I got radiation in the last time.  Very deja vu.

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited January 2014


    I did this - definitely much kinder to your skin. I am almost 6 yrs out, now, so I guess it works

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  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    Hi IcanDoThis,

    That's great.  I thought it might be harder on the skin because of the short time between treatments.  Where did you have it done?

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited January 2014

    Here in Michigan - A couple of hospitals were offering this -- I had the 3-D Conformal - you are on the table a little longer, because they do multiple spots, and move you a bit (had the boosts incorporated into the procedure).
    As to the skin, I didn't use Aquaphor - my skin never got that dry, and I found that it was just way too greasy. I used Aveeno hand creme. My normal burn/tan thing is that I turn pink right at the beginning, and then gently turn brown - with the rads, I got pink, but never red, and then it gently turned into a little brown box, which gradually faded over time.

    I would highly recommend any of these shortened treatments, I was ready for this to be done.

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  • ritagz
    ritagz Member Posts: 29
    edited January 2014

    once a day

    For the tattoos as well and hoping for the best next week

    Will let you know

    Did anyone take the hormone therapy as well?

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  • Macy187833
    Macy187833 Member Posts: 182
    edited January 2014

    @ICanDoThis:

    Can you tell me where you had this done in Michigan or which hospitals offered this? I also live in Michigan and will be doing rads in early spring. I live far from any rads treatment and I'm worried about the 6 week timespan. I can't afford to stay at a hotel that long nor do I want to be out of work. PM me if you prefer. Thanks!

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  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    I am going to ask my RO, Dr. Taghian, if he has a list of facilities around the country that do the short treatment schedule?  He is one the pioneers in this protocol.

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  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    Hi ritagz

    I met with my MO last Thursday and discussed hormone therapy which is highly recommended for me given my high ER+ score.  I am osteopenia and my mother and aunt have osteoporosis so she agreed starting on Tamoxifen and then switching to an aromatase inhibitor after 2 and a half years would make sense.  Aromatase inhibitors take the calcium out of your bones. She said there is no difference which aromatase inhibitor you take, she picks which ever one costs the patient the least.  The tamoxifen has a very small (1%) chance of causing blood clots and uterine cancer.  Because I am pretty active she thought the risk  of clots is smaller and uterine cancer would show up with bleeding and is very treatable.  Both tamoxifen and aromatase inhibitors decrease the chance of ovarian cancer.  They are currently doing gene studies to see who benefits from extending hormone therapy beyond five years.  If I get too many side effects with tamoxifen then I can always switch to an aromatase inhibitor and take bone building medication.  Unfortunately all these drugs have side effects.  I just hope I will be one of the luckily ones that can tolerate these drugs.

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  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    Hi Macy 

    My RO said the two week protocol for partial breast is done only at Mass General in Boston and Sloan Kettering in New York City.  Go to Clinicaltrials.gov and type in the search term "partial-breast" and breast cancer for the condition.  It will bring up all the clinical trials where they are doing partial breast irradiation and which centers are participating.   I typed in Michigan under location.  It looks like the University of Michigan Cancer center would be the place for you to go for the short protocol.

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited January 2014

    Macy

    You might want to contact Beaumont Hospital in Royal Oak
    http://cancer.beaumont.edu/breast/radiation-therapy

    They are very innovative with all types of breast radiation. When I was diagnosed, I went to him for a second opinion, but decided to stay where I was for treatment. Big mistake. I was the first patient to try the protocol, they didn't know what they were doing and where bad at it.  If I had it to do over, I would have stayed with Beaumont.

    I should add, I had twice daily rads, it meant that I was out of work for a week, but I went back the following Monday, although I did sleep all weekend.


     

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  • LizzieK
    LizzieK Member Posts: 67
    edited February 2014

    I started this page because I couldn't find much info on others doing the one week partial breast irradiation protocol, nine treatments in five days.  My RO at Mass General says they have been doing this for quite a few years for those with Stage I, lumpectomy, clean margins and negative nodes.  I wanted to do this because I work for myself and doing radiation over 6 and a half weeks would take too much time from working.

    We got to Boston yesterday. Today was the first day of my short one
    week partial breast treatment. Because yesterday was a holiday I will
    have the last treatment next Monday. Had to be in for the dry run at 7
    am and had the first treatment at 8:38 am (they must schedule down to
    the minute). Luckily we are staying at the hotel next to the hospital
    so it's a five minute walk (reduced MGH rate of $95 a night). It went
    well, my arms started to go to sleep but otherwise no problems. I was
    not nervous at all probably since I did radiation treatment in 2011 for
    throat cancer and knew what to expect. I went back this afternoon for
    the second treatment. They apparently do an xray each time before the
    actual treatment. I guess given the amount I am getting it's no big
    deal but does add time to how long you have to stay still. The whole
    thing took about 15 minutes but only a couple of minutes was actually
    getting the radiation. My tumor was close to my nipple and this evening
    I noticed my left breast around the nipple felt hot. The nipple feels
    slightly irritated. It surprised me a bit that I would already be
    feeling the effects. I brought some Aloe leaves that I put in the mini
    frig they provide and I put the cold aloe leaves on my breast which felt
    good. I also have been using Calendula cream for the last couple of
    weeks and put that on after each treatment.

    I will post daily to share my experience with the short treatment.  I am also posting on the Winter rads group.

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  • LizzieK
    LizzieK Member Posts: 67
    edited February 2014

    One Week Partial Breast Treatment Update:

    I had my 5th
    treatment this morning, only 4 more to go. The first night I had the
    hot breast feeling which I cooled down with some fresh aloe leaves.
    Yesterday after I finished the afternoon session I could feel some
    tingling but after that nothing. I saw the nurse and doctor today and
    the only sign was a very slight pink in the area and very slight
    swelling below the nipple where I am getting the radiation. They were
    very pleased with how it looked. Otherwise everything is pretty much
    normal. They gave me some pads to put in my bra is my nipple gets
    irritated but I haven't needed them yet. I am wearing a very old soft
    cotton bra. I put the calendula cream (it looks more like petroleum
    jelly) on every couple of hours.

    I asked why more people don't
    get this protocol and was told you have to be Stage I, no blood
    infiltration, no nodes and low grade ( I am a grade 2) to qualify.

    So far so good. I will try to post tonight.

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  • LizzieK
    LizzieK Member Posts: 67
    edited February 2014

    One Week Partial Breast Treatment Update:

    I had my 8th
    treatment this afternoon; only one more on Monday and I am done! If I
    had started on Monday instead of Tuesday (President's day) I would be
    done today.

    It is a bit more pink in the area, I have a bit more
    swelling and it feels like I have a sunburn inside more than out.
    Tonight it feels a bit itchy as well. They said I could take some
    ibuprofen but I haven't needed it yet. I lined my bra with the Curity
    cover sponges they gave me (basically soft paper) which also keeps the
    Calendula cream off the bra. Because the area radiated is about a third
    of my breasts (I'm a size B) behind my nipple I can still wear a bra
    comfortably. The sunburn feeling has always been a bit worse after the
    afternoon session so I am kind of glad my breast gets 2 days off this
    weekend to recover.

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  • LizzieK
    LizzieK Member Posts: 67
    edited February 2014

    One Week Partial Breast Rads - Done!

    I had my last treatment
    yesterday at noon. Today my breast is only slightly darker than the
    other breast, no burning, only an occasional itch. The nipple looks
    darker but nothing feels bad. I am keeping up on the calendula cream.
    Compared to what I've read on the discussion boards I think my symptoms
    are less than those with the longer whole breast treatment. Since my
    cancer was on the left side this treatment meant no radiation to my
    heart. Like I said earlier, this is not for everyone but if someone is a
    Stage one, no nodes, grade 1 or 2, clean margins then I would highly
    recommend asking about the one week partial breast protocol. The short
    overall treatment time is a blessing for those of us still working. The
    insurance companies also save money since they pay by the individual
    radiation session.

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  • pcollins
    pcollins Member Posts: 26
    edited February 2014

    I am trying to decide partial breast using the 5 x 2 treatment vs a full breast 3 weeks or 15 treatments as I had with my first breast cancer.  Difficult to decide as from what I understand the full breast prevents future cancers from occurring?  Is this right?  Do you know the answer?  Also, I have mycobacterium Abscesses in my lungs, primarily in the upper right lobe.  The radiation of the Left breast, caused scar tissue on the upper left lobe of the lung. If I am to have a lobectomy on the R Lobe, the scar tissue may interfere with a clean removal and thus the M.Absecsses may migrate into the rest of the lungs and into the blood stream.  Difficult decision.  Am also trying to decide the direction on chemo that has been recommended in light of my lung diseases / infections.

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  • LizzieK
    LizzieK Member Posts: 67
    edited February 2014

    Hi pcollins,

    Sounds like yours is a complicated case.  The radiation gets rid of any stray cancer cells that might have gotten missed in surgery.  It only works where you get the radiation which is why partial breast radiation is limited to those with clean margins.  I went with partial breast because my tumor was small and they got wide margins.  I had throat radiation 3 years ago and also wanted to limit the area where I got radiation this time, especially to my heart and lungs.  It may make sense for you to avoid getting more radiation to your lungs, but it depends on where your tumor is (mine was behind my nipple).

    Are you seeing doctors at a major cancer research center?  They see the more complicated cases and have access to the latest research.  The closest one to you would be the University of Colorado Hospital.  It is always a good idea to get one or more second opinions with at least one being from a cancer research hospital.  

    I hope you get some good answers. 

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