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Topic: Starting Radiation January, 2022

Forum: Radiation Therapy - Before, During, and After — What to expect from treatment and ways to cope with side effects.

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Posted on: Dec 28, 2021 11:04PM

Posted on: Dec 28, 2021 11:04PM

jen2957 wrote:

Anyone else starting radiation in January who would like to share experiences and provide support to one another? As I’ve been waiting to be cleared for rads, I have been following the experiences of those in the November and December radiation topic threads and have learned so much from the discussion there!

I had my UMX on October 21, but had a positive margin that had to be surgically dealt with, so my radiation plan was delayed a bit. Today, I finally got the all-clear from my plastic surgeon to go ahead with rads! I will be mapped on January 6 (they were able to schedule it on the same day as my oncology appointment, second Lupron shot, and first Zometa infusion, so it will be convenient, but definitely a full day)! I was told I will get started on the actual treatments about a week after mapping, so that should be the second week in January. I will have 25 sessions + 5 boosts (depending on how my skin holds up).

I’ll be getting rads with my TE in place, so if anyone has gone that route, I would love to hear how it went. I’m also interested in possibly using Mepitel, but I don’t yet know if my hospital recommends/allows it. Wishing everyone a happy last few days of the hear



Surgery 10/21/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing, Simple, Skin Sparing; Reconstruction (Right): Tissue Expander Surgery 12/2/2021 Lumpectomy (Right) Hormonal Therapy 12/22/2021 Aromasin (exemestane) Radiation Therapy 1/19/2022 Whole breast: Right breast, Lymph nodes, Chest wall Surgery 4/6/2022 Reconstruction (Left); Reconstruction (Right): Fat grafting Surgery 5/3/2022 Surgery 8/1/2022 Reconstruction (Right): Fat grafting, Silicone implant Dx IDC/DCIS, Right, 5cm, Stage IIIA, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Jan 6, 2022 09:52PM - edited Jan 6, 2022 10:23PM by jen2957

I had “all the things" done today: rads mapping, onco appointment, Lupron injection, Zometa infusion, and lymphedema therapist evaluation (no lymphedema, but had cording that has been resolving; I decided to keep the appointment in order to be proactive as I begin rads). So far, all has gone smoothly- I know there is a possibility of side effects from the Zometa for the next few days, but shouldn't be any worse than maybe vaccine-related reaction if I get them.

The only somewhat bad news I got today was that my radiation treatment doesn't start until January 18. I needed to start rads by January 14 to get the 25 sessions plus 5 boosts in, but I can't start until January 18 bc my RO is on vacation next week and the 17th is a holiday. My last day of rads is scheduled to be March 1. I was scheduled to leave with my husband on February 25 for his organization's annual convention that he hosts on Feb 25. Hoping I either don't end up needing to do all the boosts at the end so I can leave when my husband does OR I will at least be able to join him for part of the time. Ughh. Cancer- the gift that keeps on giving.

Dres- Gosh- Y'all have been through the ringer- I am so sorry that you are having to go through this a second time. As you can see from my stats, I had a large tumor as well…they initially thought it was less than a centimeter, but it ended up being 5.5 cm of equal mix of DCIS and IDC. I went from Clinical Stage 1a with no node involvement on any scans to Anatomical Stage 3a after surgery to Pathological/Prognostic Stage 1b after pathology (very lucky to have had the markers I have, considering the size and Lymphovascular invasion). Thankfully, my MammaPrint came back as Low Risk as well and also indicated that chemo would not be beneficial for my current tumor. No guarantees, of course, but not as bad as it could have been. Did your wife get OncoType done on her tumor?
Also, you are 100% welcome here- don't be hesitant at all. I personally love having a spouse's perspective so I can better understand the impact this whole…hmmm… situation? Nightmare? Journey? Detour through South Hell? I never know what to refer to it as. 😂 Often, our spouses want to be strong for us and don't want to upset us with their own fears and feelings-it is helpful not only for us, but hopefully we can provide you with much deserved support as well!

Mermaid- Two words: Over It!!!! Your trip is roughly the same time as mine! I hope yours works out so you don't have to reschedule- it's hard enough to get everyone's availability lined up as it is. Fingers crossed you won't have to postpone or change plans.

Dicon- Huge congrats on getting your port removed! What a relief that will be, I'm sure! Enjoy the weekend away from all things cancer if you can!





Surgery 10/21/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing, Simple, Skin Sparing; Reconstruction (Right): Tissue Expander Surgery 12/2/2021 Lumpectomy (Right) Hormonal Therapy 12/22/2021 Aromasin (exemestane) Radiation Therapy 1/19/2022 Whole breast: Right breast, Lymph nodes, Chest wall Surgery 4/6/2022 Reconstruction (Left); Reconstruction (Right): Fat grafting Surgery 5/3/2022 Surgery 8/1/2022 Reconstruction (Right): Fat grafting, Silicone implant Dx IDC/DCIS, Right, 5cm, Stage IIIA, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Jan 6, 2022 10:46PM mfk wrote:

Just read through the treatment planning document that was posted to my medical records. Obviously I don't follow all of the details, but it's comforting to see the care that goes into figuring out how to ensure that the radiation lands where it should and doesn't land where it shouldn't. Region of interest, target volumes, lots of math. Learning some basic things about anatomy that never came up in business school.

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Jan 7, 2022 05:03AM oldladyblue wrote:

Hi all, I am doing fine with my 4 treatments so far, prone position working out OK. I really like the VA, they've been great with all of my treatments so far.

Jen - Sorry to hear that your dad had major surgery and you can't get out to see him. I hope he heals well. Also sorry that your treatment schedule isn't matching up with your husband's conference trip. I do hope you can make it for at least part. I feel for you trying to go and having scheduling mess it up. So close to being the right timing. I heard of one woman getting two treatments in one day a few times to help end radiation on a certain day for her, I have no idea how that worked out, or if your doctor could do it for you. For me, my sister bought us a cruise for a Christmas present and a celebration of me completing treatment, it was to leave in March 2022. Now cancelled due to covid scares on cruiseliners. I cried when it was cancelled I was so looking forward to it.

mfk - Brave of you to try and read your records. I think I would drown in all of the medical terms.

dicon - Wish I could get my port out, I haven't been told anything other than "we leave it in for awhile" about when mine might come out.

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Jan 7, 2022 05:10PM txlorelei wrote:

4 sessions down, 26 to go.

They have me positioned with my right arm raised to shoulder height. During the mapping and the first treatment, my arm fell asleep. It hasn’t been as bad during the following shorter sessions. However, I woke up this morning around 3:30 am with shooting pains in that shoulder and upper arm. I had to take both Tylenol and advil to even make a dent in it. When I asked the tech about it this afternoon, she didn’t have any advice.

So far no skin issues; I’m using both Miaderm and Aquaphor as a precaution.

Good luck to everyone

Dx 7/7/2020, ILC, Right, 5cm, Stage IIIC, Grade 2, 26/26 nodes, ER+/PR+, HER2- Hormonal Therapy 8/12/2020 Femara (letrozole) Surgery 1/4/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right): Simple; Reconstruction (Right): Aesthetic Flat Closure Dx 8/25/2021, LCIS, Left, 1cm, ER+/PR+, HER2- Surgery 12/11/2021 Mastectomy (Left): Modified Radical; Reconstruction (Left): Aesthetic Flat Closure Radiation Therapy 1/3/2022 Whole breast: Lymph nodes, Chest wall, Right breast Targeted Therapy 3/3/2022 Verzenio Chemotherapy AC
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Jan 9, 2022 04:55AM oldladyblue wrote:

Gosh TXLorelei , sigh, I am sorry for your arm/shoulder pain. I hope they can figure out how to relieve it for you.

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Jan 9, 2022 09:26AM jen2957 wrote:

TXLorelei- Ughh! I have only done mapping so far, but my right arm was over my head - kind of in a 5th position ballerina pose- when they finished, I had to use my left hand to help lift my right arm off the table. I have had some shoulder pain in that side before, so this just exacerbated it. Have you heard of or used Voltaren (diclofenac) cream? It is an anti-inflammatory cream. It used to be prescription only here in the US- my husband had a back issue when we were out of the country and that’s when we discovered it bc was OTC there. It worked wonders for him and has since become OTC here…it works like a charm on my shoulder pain and my thumb joint arthritis. You may ask your radiology team about applying it to your shoulder after each session- it’s inexpensive and may be worth a shot.

MFK- For me, I think reading the plan of treatment and researching everything is my way to try to find a bit of control in all of this chaos. I feel like I need to know what is happening and why at all times.

Oldladyblue- I have not had a port (no chemo, but due to my history of stroke, they would have not been keen on doing one anyway), but all my friends who have had one say it was one of the things they hated the most- even if it didn’t cause pain, it was just always there and always annoying. I hope you get yours out soon!
I’m so happy to hear that you like your team! It is so important to feel comfortable with the people you are going to be dealing with for such a long time, but even more so when you have to trust them to manage your health care! I can’t believe you are already 4 sessions in- it seems like it quickly! I hope all of us will feel that way at the other end of this



Surgery 10/21/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing, Simple, Skin Sparing; Reconstruction (Right): Tissue Expander Surgery 12/2/2021 Lumpectomy (Right) Hormonal Therapy 12/22/2021 Aromasin (exemestane) Radiation Therapy 1/19/2022 Whole breast: Right breast, Lymph nodes, Chest wall Surgery 4/6/2022 Reconstruction (Left); Reconstruction (Right): Fat grafting Surgery 5/3/2022 Surgery 8/1/2022 Reconstruction (Right): Fat grafting, Silicone implant Dx IDC/DCIS, Right, 5cm, Stage IIIA, Grade 1, 1/3 nodes, ER+/PR+, HER2-
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Jan 9, 2022 09:19PM txlorelei wrote:

I had the shoulder pain again early Saturday morning, but I noticed that it went away when I was sitting up. So last night I tried sleeping on my wedge pillow (that I had bought for surgery recovery) and that seemed to work. I think I’ll use it again tonight even though I prefer to sleep on my side rather than my back.


Jen and Mfk: did your treatment plan show exactly where you’ll be zapped? My RO’s discussion points have been very general. I think I’ll ask for more details when I see her again. The radiation office doesn’t participate in MyChart

Old lady blue: I was very glad my MO gave permission for my port to be removed during my November surgery. Hope you can get it out soon.

Dx 7/7/2020, ILC, Right, 5cm, Stage IIIC, Grade 2, 26/26 nodes, ER+/PR+, HER2- Hormonal Therapy 8/12/2020 Femara (letrozole) Surgery 1/4/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right): Simple; Reconstruction (Right): Aesthetic Flat Closure Dx 8/25/2021, LCIS, Left, 1cm, ER+/PR+, HER2- Surgery 12/11/2021 Mastectomy (Left): Modified Radical; Reconstruction (Left): Aesthetic Flat Closure Radiation Therapy 1/3/2022 Whole breast: Lymph nodes, Chest wall, Right breast Targeted Therapy 3/3/2022 Verzenio Chemotherapy AC
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Jan 9, 2022 10:28PM Mermaid75 wrote:

First visit with the RO was on Friday, mapping on Tuesday and then I get started with my 20 sessions either next Monday or the Monday after that. Feeling thankful for what sounds like a relatively short course!

Jen - When I asked about travel, my center said they can often move a Friday treatment to the early morning and a Monday treatment to the late afternoon to try to accommodate weekend travel. I don't know that that would give you enough time to get to the event with your husband, but maybe worth asking about?

TXLorelei - Sorry about the arm pain! Hope you can find some relief!

mfk - Looking at the treatment document sounds fascinating! My husband is a physics teacher and has helped me understand (at a very simplified level!) how the radiation machines work and it is just amazing. I feel so thankful for all the scientists who were able to figure these things out!

DX 12/21, adenoid cystic carcinoma, 3cm, triple negative
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Jan 11, 2022 12:03PM Dicon wrote:

Update. Well, port removal postponed. Woke up in the middle of the night wide awful pain in my side and lower back. came two days after radiation. Radiologist does not think radiation caused it since radiation is in upper body.

Could be from pinched nerve in my spine which was exacerbated by taxol and the whole neuropathy thing. Anyway, going to pain doc Thursday who will send me for an mri. Does seem an odd coincidence the pain came with radiation. Going for fourth session this morning so will see if it gets worse.


Dx 2/2021, IDC, Left, 6cm+, Stage IIIB, Grade 3, 15/25 nodes, ER+/PR+, HER2- Chemotherapy 6/18/2021 AC + T (Taxol) Surgery Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left
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Jan 12, 2022 06:00AM Mermaid75 wrote:

Mapping session today and got my tattoos. Ouch! Before I got them, I had a thought of someday getting the dots tattooed into little cute flowers or something, but if just a dot feels like that, I’ll never last for an entire design!

DX 12/21, adenoid cystic carcinoma, 3cm, triple negative

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