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Starting Radiation Sept. 2019

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Comments

  • suzyqflowers
    suzyqflowers Member Posts: 7

    Hi all, starting radiation mid-September, if Oncotype comes out OK. Both onc and rad dr said they thought it would be fine. I have to use the assisted breathing device (?) since it was a left side tumor. Kinda scared of the whole process-my health history had been great up until the mammogram in July. Had a lumpectomy and sentinel node biopsy, still healing from that. Thank all of you for your hints and support..

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Welcome suzyqflowers-Hope your onco score comes back low. I was not so lucky and had to go the chemo route. Also needed 3 surgeries due to unclear margins. Looking forward to getting through rads. You should do fine. We are in this together and will be supportive of each other. Take care. Pat

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    1 of 33 done. I had a little discomfort in my throat inmediatly after rads and now I feel my tongue burned... I hope these symptoms do not get much worse during treatment ...

    Have a good night, ladies!

  • UpstateNYer
    UpstateNYer Member Posts: 331

    yndorian1- Oh, my gosh. So sorry that you have burning in tongue and throat. I have never heard of that symptom before. I sure hope that you will feel better soon. Make sure you tell your radiation doctor about the discomfort you experienced. ((Hugs)) Pat

  • dogmomrunner
    dogmomrunner Member Posts: 501

    yndorian1 - that's not a SE I would want, I hate it when I burn my tongue on hot food or drink. Are they radiating (I guess that's the word) more than just the breast(s)? I hope it is just a temporary thing

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Thanks, Pat!

    Today I woke up with a headache and a little nauseous but my throat and tounge are fine.

    DogMomRunner: They are radiating my collar bone too (I had 4 positive nodes, so I'm having the whole thing) From what I have read, these SEs are common, but not everyone gets them. I hope you don't.

    I will update on Friday. HUGS

  • PinkArmor
    PinkArmor Member Posts: 51

    I had my first treatment today. I will be getting 16 regular and 4 boosts for a total of 20. Puts my end date on Sept 30. First one done and not too bad. Had xrays today so it took a bit longer. thankfully that's just once a week. Stopped by and picked up the Gel for radiation skin problems today as well. This stuff is so neat. She said 1 bottle should last through all of my treatments. You only need just a little. It goes on without any sticky or oily residue.I am super excited about this product. I will let you know how it works. 1 down 19 to go.

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Hi all

    Glad you are feeling better with the burning, Sonia. Sorry about the nauseous feeling and headache. Hoping the rest of your treatments go easier for you.

    Pink armor- I start next week, go on Sept. 10th for initiation of treatment, then rads start Sept. 11th. I will finish Oct. 2nd, so we will be on a similar schedule. Hoping for minimal se's for us. Let me know how the gel works for you.

    Dogmomrunner-how are you doing?


  • smackan
    smackan Member Posts: 34

    Hi everyone, I love reading how everyone is doing! I got my Oncotype today and it was 15 so no chemo! So happy. The SO and MO looked at my hematomas, they measured the smaller one since it is where my cancer was and it was 6 cm. The larger one is at least 3 times bigger - no one seems concerned about them. After 3 people pushed on it today, it is really really sore. I know my RO will watch the smaller one since it is on the BC side but the large one is on the right side where I had a reduction only. I will just continue to massage them.

    My simulation is Thursday and I will find out my starting date after that so I will be a little behind everyone. Glad no one is doing awful at this point

  • dogmomrunner
    dogmomrunner Member Posts: 501

    Hi everyone - I have this week off from appointments and treatments. My every three week Herceptin started last week and that will continue until about June 2020. I will go for mapping this coming Monday and radiation treatments should start the week of the 16th.

    PinkArmor - I may have to get some of that gel.

    I'm doing good UpstateNYer. I'm getting over the chemo SE. I have some taste back. The nause is minimal now and neuropathy is just in my big toes. I do have a dry cough, which I'm not sure is chemo related or allergies/cold. I hope you are doing well!

    smackan - I am so glad that you get to avoid chemo. I think you and I will probably start at the same time.

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Smackan-I have tears of joy for you in hearing that your onco score came back at 15. How wonderful that is. Sooo very happy you won't need chemo like some of us. You are getting spared a lot. Hope the hematomas will subside soon, and simulation goes well for you too.

    DogMomRunner- hope your chemo se's continue to be minimized. I was lucky to not have had lingering neuropathy or mouth changes. The days following chemos were difficult enough for me with headache, fatigue and flu like symptoms. Hoping we all get through rads with no se's.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Smackan: You don't need chemo ... 🎆 🥂🍾👍!!!!

    Ladies, I was going to update on Friday (since my first rads day was pretty bad and I didn't want to demoralize anyone)

    but I must say that today I feel much better, I had no nausea or headache, I have no burning in my throat (just a little on the tongue) I am not fatigued... I hope this continues in this way for many more treatments!

    Hugs ❤

  • GiddyupGirl
    GiddyupGirl Member Posts: 196

    Yndorian1 - glad to hear things are going better for you with radiation. Fingers crossed all goes well from here on. Take care Hugs

  • smackan
    smackan Member Posts: 34

    Hi everyone. I had my CT planning and mapping session today. I got my tattoos also- I was surprised they were on my back (and that I got 6 of them). I guess I thought they would be on or around my breast. But I am doing radiation in the prone position so that must be why. I was surprised how stiff I got during it all- glad the actual sessions will not be as long. They do give free weekly massages so that will be nice.

    My RO did not want to do it today because of the incisions spots that aren’t healed yet but I talked him into it. However, because of that I won’t actually start until September 23rd and will go through October 14. He wants more time for these spots to heal.

    Yndorian1- glad the next sessions were easier. You are the gauge right now since you are the first 😀


  • PinkArmor
    PinkArmor Member Posts: 51

    Day 3 of 20. So far it hasn't been bad but I think my skin is starting to pink up a little bit. I am afraid that I am going to burn bad. I am so fair skin and I sunburn easily. I am a little worried about it. Has anyone else had a headache? I have had a bad one the last 2 days. It could be the way the neck thing holds my head, holding me arms over my head or the AI drug, but since it just started on day 2 it had me concerned. I woke up in the night last night and my shoulders and arms were hurting bad. Guess that's from the position on the table. This definitely does not help Fibromyalgia. But it's going to be ok. I just have 17 more tx to go and 4 yrs 10 months of AI drug- Yeah Me! Smile

    Hope everyone is doing well.

    Smackan I had opened wounds as well. My right where the cancer was is almost healed less than a cm now. We had to start soon b/c time was short. My left is still a mess but no rads needed there. Are you seeing a wound care DR? That made the biggest turn around for me in healing. My PS was trying but the wound care Dr knows what to do and it really sped up my healing.

    Yndorian1- glad to hear it is going better for you. Hope you continue to do well.

    UpstateNYer - how are you doing?

    DogMomrunner- I have started using the gel already in prep for things to come - lol Hope you are doing well.

  • UpstateNYer
    UpstateNYer Member Posts: 331

    yndorian1(Sonia)- glad to hear things are going better for you Hoping it continues to be tolerable. 😳

    Smackan- glad to hear CT scan and mapping was accomplished. Probably good that RO wants to wait for better healing to begin rads. Nice you will get weekly massages. I am jealous! May I ask why you will be in prone position for rads? My 3 tattoos are in between breasts and on sides of my body under my upper arms.

    Pinkarmor- Hoping that you will not getting a lot more pinking of skin. Are you using any gels or creams prior to txt? Are you doing anastrozole or arimidex? I just stated anastrozole today. I am deathly afraid of se's. You have been on it for 2 months, do you think you are experiencing any se's? My MO said I could start AI after rads completed, but I wanted to get started sooner since it has been 7 months since initial diagnosis. Next week rads begin for me.

    Suzyqflowers- have you gotten your onco score yet? Fingers crossed it is low.

    DogMomRunner and giddyupgirl- how are both of you doing today?

    ((Hugs & Prayers)) to all. Pat

  • smackan
    smackan Member Posts: 34

    My hospital, which is part of The Ohio State University, does left side cancer in the prone position to limit the heart and lung exposure -at least that is what he said. He also said that radiation won't go through my rib in this position limiting any SE with possibility of injuring a rib. It is interesting that you guys started your AI already. My oncologist said I wasn't to start Tamoxifen (I am still pre-menopausal at 53) until 2 weeks after rads are completed so they can tell where the side effects are from.

    Also, just for info, they gave me a bottle of something called Boa Vida to use 3 times a day. Said this would limit myskin side effects. The bottle says cleansing cremebut they told me that it is really lotion.

    PinkAmour- I hope the skin doesn't get worse. That is worrisome so quickly! Also, no one has sent me to a wound specialist. My PS and MO said they were big enough (the biggest one is about the size of a dime) to be concerned about and that the tissue was healthy. My RO has been the first one concerned. He was also surprised that they haven't done ultrasound on my hematomas. I want to trust everyone and not complain but I can't believe open incisions after 5 weeks are normal and to be honest, the hematomas worry me most because the one is at least 6 inches long and hard and uncomfortable. A little troubling also is that it will be 8 weeks before I start radiation

  • rlws
    rlws Member Posts: 37

    Sounds like a lot are doing well!

    Congrats on no chemo - smacken! I am fortunate as well to have no chemo.

    Had my rad mapping yesterday. It went smoothly. They do not use tatoos where I am, just mark me and put waterproof bandages on top of the markings. I now wait for when my simulation will be to check all the marks with the CT scan done yesterday. I was told to practice holding my breath because it is on my left side, makes me nervous but...

    I was given a steroid creme to use twice a day and was told to use aquaphor over that to help with the skin irritation and the itching.

    Smacken - I am also pre-menopausal( 50) and was told to start the Tamoxifen after Radiation.

    Hope all keep doing well through this process!

    rlws

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Good to hear from you, rlws. I was given the option to either start AI right away, or wait until after rads were completed. I was diagnosed in early Feb, needed 2 surgeries, then chemo, then final surgery to clear margins. It had been 7 months since dx, so I figured why not start them right away. Hoping for minimal or no se's as well. When do you start rads? Hope all goes well for you. Had my tattoos and CT scan last week, will do mapping next Tues. and rads begin next Wed. Sept. 11th. Blessings everyone. 🙏 Pat

  • PinkArmor
    PinkArmor Member Posts: 51

    Smackan-

    I trust my Dr's also but I had my RO call the PS and talk to him about the open wounds because it was delaying my radiation. They talked and decided that going to wound care my speed up the healing- they just know more and all kinds of treatments to help. In your place I might pursue the wound care at least for the open wounds. Mine had been going on for 8 weeks and just wasn't healing and I didn't want to delay rads any longer if possible. The wound care Dr said that my hematoma opening up into the cave the open wound caused was probably a good thing. It gave all that old blood some place to go. It's so hard to know what is the right thing and we have to trust that our doctors know what's best. Patience is a hard thing to come by right now tho'. The radiation clinic has a gel they recommend that is made by a breast cancer survivor and it's all natural. I have been putting it on since the day before treatment. I am just fair skin. However it doesn't look any more pink today.

    Smackan UpstateNYer - I think starting AI or tomoxifen drugs just depends on your situation and your MO. I started mine because I was delaying the radiation because of open wounds and I am post-menopausal by 7 years. In my case the sooner the better and it gave us a chance to work through the different ones to see what SE I would end up with. I took Letrozole first and it almost did me in. Severe nausea, headaches and actually was raising my BP. So I had to stop that one. We are trying Anastrazole now. So far only bad nausea and a little tired all the time. Some aches that could be the drug. I think I determined this morning that the cradle for my head in radiation is what's causing the headache. The back of my skull is tender and my neck hurts. So just grin and bear it for the next 16 txs.

    No tattoo at the clinic I go to. They do markers and waterproof tags over the marks, I was very happy about that.

    I had to laugh today. Thought on the way home - You know you have cancer when you've lost count of how many men have seen your breasts and it has nothing to do with Strugis Bike Week, Mardi Gras or how many men you've dated.

    Hope Everyone has a great weekend - minus Dr appts and rads and what all else we do during the week.

  • laurencl
    laurencl Member Posts: 203

    Joining the ranks! Had a mastectomy on 8/8, did chemo 3-7/19. Consultation today, Have my CT mapping appt next week. Thought I might get to skip this, but better safe. Such a long process...

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Welcome, Laurencl. Yes, long process is right. Hoping your rads go smoothly for you. How many treatments will you need?

  • prehistoricmom
    prehistoricmom Member Posts: 57

    PinkArmor "You know you have cancer when you've lost count of how many men have seen your breasts and it has nothing to do with Strugis Bike Week, Mardi Gras or how many men you've dated."

    Thanks, I needed that laugh/snort!

  • laurencl
    laurencl Member Posts: 203

    UpstateNYer

    Looks like five weeks. I was kind of made to believe ( or maybe I just wanted to believe) that I would not have to do radiation...there I go thinking again.HA!

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    5/33 done ... There is no headache or throat / tongue problems. My skin is slightly pink and I have a rash that itches a little. Today I started using aloe vera gel, to see if it helps. Fatigue lie down me at least once a day. I also started today with tamoxifen. Praying for few or no SE. Sorry for not mentioning each of you in my comments, but writing and translating from my phone is laborious ... and I'm so tired!...

    I wish you all the best. Good weekend! HUGS❤❤❤❤❤

  • UpstateNYer
    UpstateNYer Member Posts: 331

    Laurencl-I know what you mean about being made to believe. Both my surgeon and MO assured me that I would most likely not need chemo, but surprise, that is what I did need. I went from needing 1 surgery with IORT radiation done at same time- supposed to be"one and done". That turned into needing 3 surgeries (due to unclear margins), chemo, now more radiation. Been a long year for us for sure. 😣

    Pink Armor- so far 4 men have had a peek at my breasts. All techs have been men, go figure. Loved your statement about the losing count of the non-dateable men that have seen your breasts. Too funny.

    Yndorian1- hope your fatigue lessens and rash subsides. Good luck with Tamoxifen. I started anastrozole yesterday. Hoping for minimal side effects.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196

    HI upstate - how are you doing. I am now a graduate but I do check in cause I know how much it helped to talk to the people who had gone before me. Other than my scar being dark and kinda ugly the rest is doing well. My collar bone healed great (went really red with some blisters) but now there isn't even a mark or a tan)

    Headaches can be a part of rads between the awkward position being cooked from the inside and getting dehydrated it happens. Water, gentle neck and shoulder stretches and Tylenol really helped.

    Yndorian - don't worry about the fatigue I had it from the start too and my RO told me that happens to about 10% of patients. Funny I got red earlier and had the fatigue but it got better quickly. Best advice I got was eat extra protein when I felt tired and lie down for an hour. It really did help. Drink lots and feel better. Its okay to be kind to yourself.

    Big Hugs to all and hope you all enjoy your weekend break. Be kind to yourselves and if possible let someone else spoil you.



    .

  • prehistoricmom
    prehistoricmom Member Posts: 57

    Yndorian1 I'm glad rads are getting easier! That first experience was concerning! Hope you have a good weekend. 😄

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551

    Thank UpstateNYer and Prehistoricmom. I really appreciate your support!

    Giddyupgirl: You are very kind to post for newbies. You're right, it helps a lot to know that others have already finished it and are doing well ... ❤

  • laurencl
    laurencl Member Posts: 203

    Has PT been prescribed to anyone? Has anyone gone? I don’t know that I need it (feels like a hassle), but don’t want to skip something beneficial to recovery

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