Radiation January 2019

Options
145679

Comments

  • egregious
    egregious Member Posts: 240
    edited January 2019

    Hey HPFULL - Well done!

  • Suzyshacklechick
    Suzyshacklechick Member Posts: 64
    edited January 2019

    hi ladies. I went in for first radiation consult today and will be doing 15 . My simulation is next Wednesday. My Surgeon said I would have surgery, radiation and a pill. No mention of chemo. But today when I met my Onco Dr., he pulled out a pamphlet and asked if I wanted to take the Onco test because it was covered by Medicare. Like I said in another post.....it almost felt like a sales pitch? Is this a necessary test. Chemo has never been mentioned befor😳 Have you all had this? Thanks ladies

  • keeshondmom
    keeshondmom Member Posts: 18
    edited January 2019

    Have only 6 more sessions to go (out of 20)! Have had very little redness/fatigue. I do have some soreness, but not bad. Have been using Miraderm lotion twice a day. My only problem is one of the Techs who, for some reason, does not think I'm doing the breath holds correctly. Pretty weird as none of the others has commented on this, and I have worked with at least 7 other Techs. Thinks I'm not inhaling quickly enough and that I'm not holding my breath long enough. He has had me "practice" holding 6-8 times before the actual breath holds. As you can imagine, this makes it difficult to hold during the "real" breath holds. Luckily I have only 6 more sessions and I can only hope I won't have to work with him, but...Hate to rock the boat, but wonder if I should mention this to the doctor...

  • Dani444
    Dani444 Member Posts: 522
    edited January 2019

    Welcome M-andM37. I think you will find a lot of support and helpful advice along the way. I had 33 treatments as well, but I did not have chemo due to low mammaprint. I hope you sail through with little SE's. There are plenty of ladies on here that had few side effects. Remember in addition to all the lotions to keep hydrated. I used a cream called "my girls" that I got online but lots of people seem yo really like the miaderm. My PS also had me use aquaphor at least once a day. My center had me spritzing brewed green tea at one point, and I was not that faithful at using that. It did seem to help my itching to some degree though. The fatigue does seem to sneak up on you. Just be gentle with yourself and take naps and rest as needed.

    Suzy- I had the mammaprint test and not the oncotype test, but it is similar. Mine came back as low risk so that showed that I would not benefit from chemo. Here is a link to some info on the test: Oncotype test info

  • Suzyshacklechick
    Suzyshacklechick Member Posts: 64
    edited January 2019

    thank you Dani. It just threw me off that he even suggested it because there has been no talk of chemo and I really don’t want it. I have appt. with my surgeon who I live next week and will ask her too. Thank you for link. I will check it out.

  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    Hi everyone, and welcome M&M-37; Love the aloe Vera spray - I add the calendula cream after the spray dries - works pretty good. Today I had some itchiness and the RO told me to mix the calendula with hydrocortisone cream- it worked - doesn’t itch.

    Dani444- thanks - I have lump in my side, too; just below the drain site from the surgery - it’s an annoying pulling sensatiion, too. Hoping it’ll go away when done with rads. My PS said he won’t switch out the TE for at least 4 months after rads (waiting for scar tissue to settle). Did you have the implant already? Did you have a TE? Mine is in front of the pectoral muscle.

    It’s difficult to concentrate at work - I can relate to that. Just doing barely enough for crisis control- the rest can wait !

    Good luck everyone! Take care! It was sure nice to have that 3day weekend- the radiation place was closed Monday!


  • FaceForward
    FaceForward Member Posts: 44
    edited January 2019

    I'm am halfway thru! After my rocky start I wasn't sure I'd get here but since that 1st panic attack, I've been doing ok. SE's manageable and crossing my fingers that they stay that way. My usual Thursday RO appt has been changed to Friday this week so I have a couple of questions for him that I'll have to hold an extra day. I can't quite see the light at the end of the tunnel yet but at least I can believe it's there now.

  • egregious
    egregious Member Posts: 240
    edited January 2019

    Great news, FaceForward! You can do this! That's good to bring your questions to the RO, they need to hear your concerns.

    Keep up the good work, and keep us posted!

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Yay! Faceforward! Congrats on your half-way mark

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    Hey suzyshacklechick,

    Even when all other indications about a tumor are favorable, it's still possible for the oncotype test to come back saying it is a high risk tumor, genetically speaking. It's unlikely but possible. In that situation, a doctor who would otherwise have avoided chemo might recommend it. Different doctors have different standards for when they even order the test.

    If you know that no matter how it came back, you'd not want chemo, and you'd rather not know, I think it's fair to trust that.

    It's really great that medicaid is covering it, though.

  • Dani444
    Dani444 Member Posts: 522
    edited January 2019

    H8BC- I had direct to implant with alloderm, pre-pec. My nodes looked good on all imaging so we though it was a low chance they were positive. Surprise, not so lucky on the nodes. Tumor board decided it would be ok to do the rads instead of ALND and have a lower risk of lymphedema. My PS is keeping a close eye on me and so far my implant is holding up. She is thinking I may need a couple rounds of fat grafting, but I haven't decided if I want to go through another surgery. So glad you got an extra days break!

    FaceForward- Awesome that you are at the half way point! You are doing great and I admire you for your perseverance after that scary first day. Soon enough we can all celebrate with at the finish line!

    I am in the thick of the deep freeze here so I am in hibernation mode this evening! Netflix and Jammies it is!

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 88
    edited January 2019

    Welcome to all who are new. You will love this thread and appreciate all the support. I've been done with RADS since New Year's Eve but I still like to check in and see how everyone is doing.

    Keeshondmom, I did the breath holding too, but without a picky tech. Of course, they just want the best results for you but that tech's behavior seems odd. Each time I went in I had to do one or two practice breaths and the techs would tell me if I needed a deeper breath or needed to let some air out. Good Luck!

    Faceforward, I was worried about your scary start but it sounds like everything is good now. Thank goodness!

    Suzyshacklechick, I did the Oncotype test and felt it (or something similar) was considered routine for everyone. I remember being told not to worry about it, then it came back saying I would benefit from chemo! I think everyone might have been a little surprised. After that test the MO decided I should also have genetic testing. In the end, primarily due to my age, I decided to decline chemo. My MO supported my decision, which was a little hard to make. She did say that taking an AI for next 7-10 years would be super important since I wasn't going to do chemo. I told my BS I was going to flip a coin because I couldn't decide what to do. He said no, no...go with your heart. So I said no. If your onco number is low it might be reassuring to you and if it is not low then you have to make a decision. Best wishes with whatever you decide. We all make the decision that we think is best for us at the time. I'll probably worry about my decision because I am so good at worrying! But, if I didn't do the test I would worry too.

    re: creams- I have mentioned Jean's Cream before. It was given to me every week at my RO appointment and I think that there was a clinical trial for the product at my medical center a number of years ago. I haven't heard of anyone else on this thread who used it but it worked well for me. I still use it once a day. http://www.jeanscream.com/home/

    Dani, stay warm. I hope you have some hot cocoa planned for your evening. We get the arctic cold tomorrow. They are already posting delayed openings for schools in NH tomorrow.

    Take Care everyone.


  • Suzyshacklechick
    Suzyshacklechick Member Posts: 64
    edited January 2019

    thank you ladies. I have decided to go they with the Onco test and pray it is low. I as well am a worrier. Knowledge is power right? Right now I feel like I know more about cancer in these 3 months than I ever thought possible, or want to . Go to Dr. tomorrow to see what pill I am going to be on. You are all so supportive in a club I never thought I would be part of. I am so grateful. Wondering how long it takes to get results for that Onco test. My Dr. said they store my tumor for 10 years!😳


    Have a great evening!

  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited January 2019

    Suzyshacklechick it is not going to hurt. I had a similar experience with my MO (soon to me ex MO). I went in with the thought of I had surgery, am going to start radiation and I'm going to take a pill. He started right down the chemo road and unfortunately he is the first doctor to get me upset, so all of my questions about tamoxifen, ovarian suppression, etc never really happened because I was done with him. I could get him saying we should run this test, there is a chance if it comes back high that you would benefit from chemo and left it at that. But he was like there are 4 treatments, 3 weeks apart, you will lose your hair, etc. I found out later that he treats a lot of blood cancer and leukemia so he does a lot of chemo. Needless to say today I talked to my RO and said I really would like an MO more focused on breast cancer and he was like I have the perfect person, all she does is BC. In fact they are speaking together at a conference next week about their collaborative work on BC. He is arranging and appointment, the first one was more the office my BS sent me too, I think more for location convenience, which it is only another 15 minutes to go to the main location and see someone more specialized. On the other note my Oncotype came back with a 9, so no chemo for me and all that time chatting about chemo for not.

    Keeshondmom you need to say something. I'm doing the breath hold and it is 2 at the beginning to make sure we are good and then 3 for my treatment. I would bring it directly up to the tech but if you don't feel comfortable then talk with your doctor or a nurse. You are your best advocate.

    I finished week one today, 5 down, 10 to go...so far so good. A little swelling in my armpit yesterday but it was gone this morning. See some of you on the February board.

  • KerLyn
    KerLyn Member Posts: 35
    edited January 2019

    Suzy - They store it for 10 years?? WOW! I didn't know that! I'm asking my Dr. at the next appt about that, I am so curious about where that little booger is now. Can I mail it a nasty letter??? and I am such a worrier too....late nights, sleepless nights, my brain goes insane places with this diagnosis. I hate it - doesn't ever change anything....just makes me sleepy and cranky on top of still waiting for results

    Dani - I had implants pre-diagnosis (I've had them for 12 years), so far so good with the RADS. I'm in PA, so I'm living the Tundra life the next few days as well......PJ's, fuzzy socks, hot crock pot meals, and wine.....and Miaderm.

    I got my Myriad genetic test results back today, and I am negative for all 29 tests, INCLUDING the BRCA genes! Great news, and so happy for my daughter!

    I'm more half way through RADS, some pink has turned to have a more reddish hue...and I had some rashy itchy stuff under the boob, but after one day with hydocortisone cream and a switch to a softer bra, I'm way better! After Friday I'll only have 10 more to go! I'm almost to the single digit countdown!!

  • AMLmom51
    AMLmom51 Member Posts: 40
    edited January 2019

    Suzyshackle, I had the onco type test and it came back at 31 so without question I had chemo. With chemo I went from a possible 40% recurrence in 10 years down to 12%. Before I got the results I thought if it was borderline and I had to make a decision on whether to do chemo, I was leaning towards chemo. I thought I'm going through all this now, just get it over with and hope for a healthy future. That's great if Medicare pays for your test. It's definitely a big decision to make.

    WORK!! I returned to work full time the week I started radiation. The cancer center is in the opposite direction of my work and my appointment times at 7:15 am, so by 1pm I was wiped out. I worked an additional full week then I went on half days. So much better! I had no problem getting a disability note which was shocking. The RO nurses actually brought it up to me.

    Thanks everyone for posting your experiences. It's so helpful. My skin is dark and red now, and I'm am so swollen! Three more boosts and I'm done!

  • TC73
    TC73 Member Posts: 25
    edited January 2019

    Dani444 - I feel your 'fatigue' pain - I think it's the gift that just keeps on giving 😩 Oh, sorry to hear about the lumps, hopefully it's just scar tissue.

    I am a week out from having my last treatment and I still feel tired and my concentration levels are really bad.... And I have to sit a college exam in the morning 😄

    But the good news is my skin has improved, the rash has gone and I've nearly finished peeling. The boost area is still a little red, but it's not too bad.

    I see the RO tomorrow for a final check up and to be discharged from her care.

    To everyone still going through treatment, stay strong, stay hydrated, remain positive and remember 'you can do it'.

    Sending positive thoughts and gentle hugs to you all.

  • Suzyshacklechick
    Suzyshacklechick Member Posts: 64
    edited January 2019

    can someone tell me the name of the aloe spray you keep in fridge. I think you order online? Would love to get that in advance. Thanks again for comments. Praying for low score.

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Suzyshacklechick- It's good that you went ahead with the oncotype test. I was a 15 so no chemo, but I feel better knowing. I wasn't given the option of having the test or not; they just ordered it, but I am super grateful they did. My test took about 3 weeks to come back due to the Christmas and New Years holidays, and I was losing my mind. Normally it is supposed to take 7-14 days.

    Today was day 7. I have been getting a few sharp stabbing zingers that last about 5 minutes and some nerve pain along my incision lines, but I had pain in that area before I started RADS so I knew it would mostly likely get worse. It feels like there is broken glass shards in my one incision...such a weird, unpleasant feeling. I feel super thirsty so I am drinking twice as much water as I usually do. I am slathering on the Miaderm and ordered that spray aloe Ergregious mentioned.

    I know it is pointless to look back as I am powerless over it now, but I so wish I had the BMX. This licap flap recon lumpectomy really did not work out :( Hopefully next year a new PS can fix it. 

    Joy hope your skin is feeling better

    LPLibarygirl I will need to check out the Jean's cream.

    Stay warm those of you in the polar vortex :) Sending warm thoughts.


  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    Suzy- it’s seven minerals aloe Vera gel spray; USDA organic- keep in the frig once you open it, and it’s good for 2 months after opening. I spray it on my hair too ;). I found it on Amazon. All the best to you

  • Suzyshacklechick
    Suzyshacklechick Member Posts: 64
    edited January 2019
  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    thanks for sharing, Dani444- My PS wants to do fat grafting too but I doubt I’ll do it. I just want them to switch this TE out for an implant as soon as possible; then put all this in the rear view mirror!

    Good luck to all of you who are in that cold weather! Stay warm!!

  • Labmom82
    Labmom82 Member Posts: 11
    edited February 2019

    I had my final treatment today! My techs were wonderful and so far I only have some minor discoloration and rash under my arm. I know there will be more changes in the weeks to come but my doc and techs are pleased with how my skin looks

  • Dani444
    Dani444 Member Posts: 522
    edited February 2019

    image

    Congratulations on finishing Labmom82!!!!!!!

  • egregious
    egregious Member Posts: 240
    edited February 2019

    Hey LabMom,

    YOU DID IT!!!!

    HOORAY!!!!!!!!

    Wishing you good luck and smooth sailing in the next part of your journey.


  • Labmom82
    Labmom82 Member Posts: 11
    edited February 2019

    Thank you egregious and Dani444. I see the mo at the end of the month and will find out hormone meds I will be taking.

  • TC73
    TC73 Member Posts: 25
    edited February 2019

    Congratulations Labmom82.

  • DeeDeeT
    DeeDeeT Member Posts: 76
    edited February 2019

    CONGRATULATIONS, Labmom82!!

  • Piksie
    Piksie Member Posts: 161
    edited February 2019

    I'm a little late to this discussion, but I started radiation on Jan 28. Today was 10 of 33. 25 whole breast, chest wall, axillary, and supraclavicular lymph nodes; 8 boosts. I'm just now starting to have mild SEs. An occasional stinging zinger in one small spot, tired (but nothing new), and just a tad bit of redness above my clavicle. My RO strongly recommended Mometazone twice per day, so that's all I've been doing so far. Although I'm mixing it with a lotion because it's thicker than Baby Butt Paste!

    I'm really hoping my energy level holds as I have two active boys, and I don't intend to take any time off work except for the daily trip for rads, but I do it early in the morning so only miss about 30 minutes most days. Work has been very supportive of my cancer journey, but my boss keeps comparing me to his 80 year old neighbor who "did just fine" with radiation. I don't have it in me to point out the obvious differences between her treatment and mine. Still, when fatigue hits, I plan on napping at work. :)

    After this first 33, we are going to hit T6 and my 9th rib. They've yet to be planned out, but it's coming. The proximity to my spinal cord makes me VERY nervous! But I guess it's gotta be done… Has anyone here had bone rads?

  • egregious
    egregious Member Posts: 240
    edited February 2019

    Hi Piksie, welcome!

    This January group has mostly migrated over to the February group, maybe see you over there?

    Radiation February 2019


Categories