January 2011 Rads

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suzieq60
suzieq60 Member Posts: 6,059

I started the April 2010 thread early, so now I'm starting this one early. My planning session is on 6th January and I should start rads a week or so later. I've just had another cancer removed from my right breast after having cancer in my left breast a year ago. This time it only needs rads no chemo. It looks like it was there last year but not diagnosed at the time, so here I am for another round of rads after finishing my first lot in late May. Any questions re care, creams etc - I know it all Smile

Sue

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  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    Hi suepen - I'll join you for RADS!  My planning session is Jan 5th.
  • rachel5738
    rachel5738 Member Posts: 920
    edited December 2010

    I'll join--I had my rad simulation today but won't start radiation until early Jan. The simulation went well--4 tattoos (didn't hurt)--they were really good making sure I was comfortable--guessing as you will be in that position for 6 weeks. Hoping that I will start early Jan but they said that I may not start till the 2nd week in Jan. They did say to start using cream now and it will help build up my skin in the meantime.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Welcome girls - sounds like we'll be starting at the same time.  I used Vitamin E cream and aloe vera gel last time and didn't get badly burnt. Make sure you don't apply any creams for at least 4 hours before your treatment.

    I did have skin breakdown under the boob in the crease last time - unavoidable if you have big floppy boobs - but that didn't happen until the final week and did heal up really quickly. I hope it doesn't happen this time.

    Also get some soft bras to wear. Luckily I have all of this stuff already.

    Sue

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    Hi Sue - I was wondering if you have heard of anyone having the radiation treatment in the prone or face down position?  For larger breasts this makes intuitive sense to me but I don't think it is done much.
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Yes, I have. They talked about doing that last time but ended up not doing it - I reckon because it was too much trouble for them. I would have preferred it that way. This time the tumour was on the lower side of the breast, so it will be interesting to see what they do. I think even in the prone position I would still have had the skin trouble. This time I'm going to keep a pad in my bra in the crease to keep the area dry.

    Sue

  • oakley
    oakley Member Posts: 206
    edited December 2010

    Hi everyone - would like to join you in the Jan Rads group.  I had my simulation this past Tuesday - it was relatively easy, just stressful thinking about it beforehand.  I had 3 tiny tatoos (which I have learned they are indeed permanent) and they "fit" me for something that I will lie on - actually was kind of nice because it was really warm until it hardened!  I was told no deodorant for the entire time unless it is urgent, then I can use Crystal.  Also was told no shaving for the entire time as well.  Has anyone else gotten those instructions?  I am going to try Aquafor first, and they also gave me a sample of Miaderm.  Hopefully the Aquafor will work since my mom was kind enough to buy me a huge tub!  I am scheduled for 30 sessions, 5 of those being the boosts.  My first "real" session will be on Jan 4th.

    I'm a bit nervous since treatment will be on my left side. 

    Thanks for starting this thread Sue! 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Welcome oakley. I figured you were all out there just waiting for someone to start the January thread, so I decided to jump in and do it.

    Yes, I used Crystal and didn't shave - you won't need to shave the armpit of the side being zapped - I still have no hair growth on that side. I have enough left over for this time. I also used some special soap the whole time - QV bar. I just looked for it and found I have a 2 pack. I really only need a new aloe vera gel and I'm set.

    What I did last time:

    As soon as I got home I applied Aloe Vera gel - kept in the fridge.

    Then an hour or so later, I applied Vitamin E cream - Faulding Essentials brand

    Then reapplied the Vit E cream and Aloe vera gel at various times during the day. Yes I mostly hung out at home with no bra on.

    The most important thing is to not use any creams with oil in them. My nipple did go black and got a bit sore - I used pawpaw cream on it and that was great - still have that left over.

    It's going to be hard for me to go through this again so soon, but maybe I can at least help you all in the process.

    Sue

  • lrr4993
    lrr4993 Member Posts: 937
    edited December 2010

    My planning appointment is next week.  I will start after new years.  I had such an easy time with chemo.  I am scared that it will be paid back with miserable rads.  That skin deterioration under the boobs sounds horrible. I have not yet heard the no deodorant part.  Great.  At least it is winter time.

    My doc said no creams at first until we see how i do.  I call BS on that.  Kind of like my onco saying only one antinausea for chemo until we see how I do.  I threatened to change docs over that one and may do the same over the cream issue.  Would love recs on cream to use behind my doc's back. 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Rads after chemo is really easy. My rad onc said the chemo patients do cope a lot better. This time, not having chemo again, I'll experience it from the other side.

    Garbage on the no cream thing. I was given a sheet with the creams (and the brands) they recommended. Just the VitE and Aloe Vera gel were fine.

    The skin breakdown wasn't avoidable owing to the large floppy boobs - it also happens with men in the groin area when they have rads for prostate cancer. It happens where there are folds of skin. Maybe this time, if I keep the area dry using a sanitary pad it will be better. It wasn't until really late in the process and I made them dress it for me every day. Once the rads were finished I used Medi Honey on it and it healed up in a matter of a few days.

    One other important thing - don't use any paper tape or any kind of tape in the rad area. They didn't tell me that and I had taped a panty liner under the boob - ouch - lots of skin came off with it when I removed it.

    Sue

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    Sue - I have the floppy boob thing too (gravity, breastfeeding and 50+years!) so thanks for the heads up!
  • Cocococo103036
    Cocococo103036 Member Posts: 21
    edited August 2013

    Hello Sue in Australia,  I am particularly interested in your story about BC being found in the other breast this time, but that it was likely to have been there but not detected when you had your original surgery and testing. I was wondering if during your initial diagnosis, treatment and follow up, any medicos or you suggested having a dual breast coil MRI? Or was it missed using mammo ?? Or Mammo plus ultrasound??  I am asking as I am also in Australia, and I am finding the medical professions attitude towards referral for MRI's excessively narrow minded. GP's can refer for dual breast coil MRI's but if so, we pay it 100% ourselves [cost at St Vincents in Sydney is $690] but if a specialist refers us, we get a medicare subsidy, so it only costs us personally $90. I am one of those people who have dense breasts, and feel mammograms let me down as my tumour is was so slow growing it had been there for 13 years and never detected during 12 years of my biennial mammograms until this year - at which point it had become invasive, although still with highly favourable characteristics. So much so I have had no adjuvant therapy at all and no radiation either. I do not advocate this for anyone else - it was simply the stats on my rare and favourable cancer allowed it. In any event, I am interested in whether you had MRI during your first round with BC anf if it missed the BC in the second breast as well? Also, I have found negotiating the process in Australia for referral [even when we pay the full cost of MRI ourselves the GP appears afraid of Medicare investigators checking out this referral] massively obstructionist. The latest research from the international BC conference is saying MRI's use should be expanded to include women with a history of BC and who have dense breasts, are obese, have not have children as well as the usual catgories of family history and proven BRCA positivity. [I tick multiple boxes] . My theory is mammograms let me down by failing to detect BC for over 12 years and only found it after it was invasive [albeit minimally] last time so I am not taking any chances from now on with a recurrence, and I am having triple checks - mammo, MRI and ultrasound as part of my survival plan. I think me examining my own breasts and or palpation by the Dr virtually useless as a survival technique as it can only be detected once there is a palpable lump, and by that time its grown to a certain size. The triple checking at least gives me a fighting chance to have it detected at a pre-palpable level, with much better survival stats. Any input or insights from you about MRI much appreciated as well as how the second BC was detected - by you or by what system. NB.I realise MRI's are better at detecting invasive BC whereas mammos are better at detecting structural  abnormalities.  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Cocococo - I sent you a PM re the MRI issue.

    Sue

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010

    I was thinking about rads this morning and I think my fear is that somehow something will go wrong with the machine and I will get too much radiation.  I don't know how to protect myself from that.  I realize it is such a slim chance but I worry just the same!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010
    Omaz - don't worry - they're experts at doing it and it hardly takes any time at all. I was in and out in less than 10 minutes. The actual zaps only last for a minute or so. They did 2 to me - each from a different direction. The machine is controlled by a computer.
  • rachel5738
    rachel5738 Member Posts: 920
    edited December 2010

    Hi Omaz--From my simulation yesterday and talking to them---they really are experts--they measure everything and get you in the exact position that will limit the radiation to all other areas except the breast. They had to add something beneath my neck so that I could be tilted more to avoid any possible radiation to the lung. It is strange--for some reason--I'm not worried about radiation--I was more worried about chemo. Not sure if that will change once I officially start. With the amount of tests etc. that I have had this year, I'm surprised that I am not radioactive now :)

  • GrandmaBubba
    GrandmaBubba Member Posts: 111
    edited December 2010

    I'll hang out with you guys. I am scheduled to see RadOnc 1/7, but had BMX with TE's and 2 debridements so I'm still healing and PS would like fills done before starting rads. I'm not afraid of rads it's just so darn inconvenient. 33 daily txs 45 minutes from home. My Rad Onc has a cream that she has you use before you even leave the office. I hadn't heard no deodorant. Tamoxifen, hot flashes, no shaving and no deodorant. YUCK

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Hi Tonia - welcome - I'm with you on the hot flushes. Pity you have to drive so far. I only have a 10 minute drive each way. One of my chemo buddies last year had 1 1/2 hours each way!!!

    You can use stuff called Crystal Stick deodorant - you wet it and then rub in your armpit - it has no aluminium in it. And as I said, you won't need to shave, the radiation seems to stop the hair growing. So just shave before you start and you'll be hair free for ages. Mine still hasn't grown back under the other arm.

    Once you all start, you will be amazed at how quick it is and it doesn't hurt at all. It was just the going every single day that got me down but I did have a few public holidays thrown in.

    Don't be frightened - it's quite easy. I do remember crying when I started, not out of fear but overwhelmed with having surgery, chemo and then having to start another treatment process. I was ok after that though. I can't wait to see the radiographers again - one was really nice and kept pushing me to read the Girl with the Draogn Tattoo and the other 2 books. I did buy them and loved them, so then I was recommending books he could read. They were SO nice - it does help you when they are nice to you.

    Sue

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    Sue - I notice that you are HER2+, did you do a year of herceptin?
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Omaz: Yes I did - just finished 2 weeks ago and I had my port out last week. This new undiagnosed cancer was not HER2 and I had clear nodes, so no chemo this time.

    I must say the herceptin alone is a piece of cake - I never had any side effects except a very very occasional runny nose.

    Sue

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    MERRY CHRISTMAS girls!!!!!

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010

    Meryy Christmas Suepen!

  • ChrissyMH
    ChrissyMH Member Posts: 64
    edited December 2010

    Hi all,

    I know I'm an interloper because I don't think my rads will start until midMarch - I just had my second TC infusion on the 23rd with two more to go.  Then is it true that you wait about a month between chemo and rads?  And could someone educate me:  why are there 30 days of rads followed by three 'booster'???  What's the whole process?  thanks...

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Hi Chrissy - yes they like to wait a month to allow your body some recovery time after chemo. I think I had 25 rads followed by 5 boosts - the boosts are directed at the incision site, the others are on the whole breast.

  • thrmine
    thrmine Member Posts: 98
    edited December 2010

    Suepen,

    I think I may be a Jan. Rads girl.  My BMX is scheduled for Jan. 6 with radiation to follow, most likely starting later in January.   Just another thing I will be glad to be done with.  Herceptin to follow for a year.

    Alice in Ohio 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Hi Alice - they usually wait a month before doing any radiation to allow the wounds to heal. Hope your BMX goes OK.

    Sue

  • michcon
    michcon Member Posts: 145
    edited December 2010

    I'm joining you girls! Had my simulation today, got my 4 tattoos. Didn't hurt like I thought they would, just a needle prick. I start on Jan. 10. 

    I'm not sure what to think about creams. I read on many boards to do the creams even if your doctor says not to, so I bought some Miaderm. My doctor said he would only give me cream if I start to get red. I asked the nurses today and they backed him up, said don't put anything on, we'll give you cream if you start to get red. I asked why not do it now so it preps and they gave me a firm no. What to do? I'm learning to trust people who have been through this much more than doctors! 

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    Hi Michcon!  I have my sim Jan 5th.
  • cmf
    cmf Member Posts: 38
    edited December 2010

    Hi All,

      I had number 4 RADS today.  I had a lumpectomy mid Nov and then went for a few opinions before deciding not to go for chemo.  Good wishes for all as you go through treatment.  I am 57 and no one in my family ever had breast cancer so the diagnosis was a shock to me. I felt a lump during AUg, went to my former gyno for a check-up, she told me it was just dense breast tissue so I put off my mammo for two months.  My 1.8cm grade 1 tumor was found on my routine mammo. 

    michcon, my dr. also told me not to use cream unless I get red so I also am not doing the preventative thing. 

    I noticed that some docs say take the herceptin while undergoing RADS and others say to wait until after RADS.  What is everyone doing?  DUring or after for the meds?

  • FireKracker
    FireKracker Member Posts: 8,046
    edited December 2010

    im on the dec.rads. will go into feb. weather permitting.did 7 tx.cancelled #8 today.winter storm in NJ.im stuck in PA.so tx. will be delayed. the rads so far are easy,just the back and forth is a pain.

    good luck everyone.hugggggggggggs

  • Omaz
    Omaz Member Posts: 5,497
    edited December 2010
    cmf - I did chemo with herceptin first and will be continuing the herceptin during rads.  Was tumor HER2+?

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