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All TopicsForum: Radiation Therapy - Before, During and After → Topic: starting rads feb 2017

Topic: starting rads feb 2017

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

Posted on: Jan 22, 2017 09:48PM

annoyingboob wrote:

I know many of my January surgery sisters are joining me, but I thought id start a new thread for all the february rads sisters.

im 'just' doing external apbi, but im a little freaked out, especially about skin burns bc I have such sensitive skin.

if you have already done rads, what are your top tips? has anyone done external abpi?

xx

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 20, 2017 07:52AM nem126 wrote:

Hey Pamela,

For the uterus ultrasound with saline- take some pain meds. I had that done a few years ago. It's not awful, you'll get through it fine, but it is definitely crampy... I had wished someone had told me that beforehand because I went in stone cold sober, haha.

Just curious- are you doing the paragard IUD for birth control? I'm going to be getting that in the next few weeks since I can't be on the pill anymore.

Sarah

Diagnosed at 32. Life is weird! Dx 12/6/2016, ILC/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/11/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 2/28/2017 Whole-breast: Breast, Chest wall
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Mar 20, 2017 04:01PM Elem wrote:

Well my friends ,

My beach retreat is over and today is day 1 of Tamoxifen . Hopefully ,this part of tx. will go down without a hitch . Still healing from rads , but so glad to be done. Hope the best for everyone still doing theirs and also a big shout out to all of you who have finished up this past week . Congrats! I will ask shoregirl about taking vitamin K2.. thank you Aboob . Thanks for all the compliments on the pics and finishing rads. I love you all . Without the group , I cannot imagine what this journey would have been like.💗🌸

Dx 12/13/2016, DCIS, Left, <1cm, Stage 0, Grade 1, 0/3 nodes, ER+ Dx 1/4/2017, IDC, Left, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Mar 20, 2017 04:36PM - edited Mar 20, 2017 04:37PM by Mamasha

HI elem good luck taking that first dose. It's just something we gotta do.....unfortunately.

One week on tamoxifen and I really haven't noticed any changes. Some mornings my bad knee seems a little more stiff but not sure I can blame the pill. I feel really alone taking this since I don't see my MO until 5/4 and wasn't told abut any supplements to take with it.

Those boost must deliver a punch because I can still feel that zingers from time to time and I finished 10 days ago. Actually felt more discomfort since ending than I did during actual treatment.

HAPPY SPRING!

Dx 12/2016, IDC, Right, <1cm, 0/3 nodes, ER+/PR+, HER2- Surgery 1/3/2017 Lumpectomy: Right Radiation Therapy 2/5/2017
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Mar 20, 2017 04:54PM Elem wrote:

Yes Mamasha , I too , feel more effects afterwards than during the rad tx. You are right about tamox. What can we do? I was told that the AI's is generally prescribed for women who are post menopausal like myself. I am 61 and therefore , would not have taken tamoxifen.However ,my bone dex test indicated the start of osteopenia and also I have hyperlipidemia which is a high cholesterol situation for which I have a stent and take a statin . My MO said that the aromatase inhibitors would not be wise. He felt the risks outweighed the benefits. So he said I could try this and see if it was tolerable . I will have a blood test after 3 months and also a gynecological exam down the road.But that is all I know and probably just want to keep it that way, so as not freak myself out which I do so well these days! Please keep in touch either here or through private message . Would love to sstay in touch with so many here. I realize we must move on , but I love the friendships and bonds we have made !

🌸💗👍🙏






Dx 12/13/2016, DCIS, Left, <1cm, Stage 0, Grade 1, 0/3 nodes, ER+ Dx 1/4/2017, IDC, Left, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Mar 20, 2017 07:21PM Pamela23 wrote:

I was told today that the dark spots that have appeared should fade in a couple months. Who actually talks to us about the Tamoxifen. our RO or MO? No mention of it yet. Also, I wonder why there are differences in doing 4 week like Elem vs 6 like me? My calcifications were only 3mm and they kinda told me it's a blanket protocol so I'm getting the same amount as someone who had 2 cm. Wish these protocols were a little more customized!

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Mar 20, 2017 08:03PM annoyingboob wrote:

Pamela, sorry you got an extra few weeks :-(((

Mo is the one who will talk about tamoxifen, although my ro encouraged me take it all 5 years.

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 20, 2017 08:59PM Elem wrote:

Not sure Pamela23 but I am not sure what dosage of radiation I received either. What I do know is that my skin is very burned from my tx. I am dark skinned and didn't think I would end up with such blackened skin. They talked about it starting to look pink after the 3rd week , so I did not expect this much discoloration and peeling . Those little black dots are starting to fade away though. It was also my breast surgeon who initially mentioned having to take tamoxifen although it was protocol talk , he would not be prescribing it or following up with me during that tx. Then after my appointment with the MO before rads was completed , we touched upon the subject of hormone therapy . Initially for me , we discussed Aromatase inhibitors, but after tests for bone density and my heart , the MO thought it best I use the tamoxifen if I decided to do it. He showed me the protocols on the computer from national guidelines. For people like us with tumors under 2cm it was to be considered , as was rads . I was already finishing up rads at this point. I believe I based that decision doing the rads on the 15% recurrence rate the RO mentioned. I really had a headspin going during the whirlwind of the early dx .days. It was overwhelming! But I felt like I should try to lower recurrence to the lowest percentage possible , which in my case , with rads and hormones , was about 3%. Based on no lymph involvement, size and genetics . But it is still scary and confusing to me.I am not sure if grade of tumor changes anything . I believe I was grade 2. I just hope we are all doing the right thing and never have to revisit this again . 🌺🌸💗


Dx 12/13/2016, DCIS, Left, <1cm, Stage 0, Grade 1, 0/3 nodes, ER+ Dx 1/4/2017, IDC, Left, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Mar 21, 2017 03:44PM makeiki3 wrote:

Hi All! I've been reading/following this thread for awhile and decided to throw this out to everyone. I'm exactly 11 weeks EOC and am continuing with HP, as opposed to TCHP. I have done 10 of 28 radiation sessions so far. My skin looks good so far. I have developed an allergic reaction to aloe vera so we shall see what happens if/when my skin actually gets to that burnt place. Wondering if anyone has had this problem? Another problem I've been experiencing is a serious loss of smell and taste! I had the metallic taste after my TCHP for about 10 days each time, but nothing like this where I seriously cannot taste anything or smell anything. A nurse I asked about this said that it was probably due to chemo....but I seriously doubt I'd be developing these issues now. I'm just hoping that my senses return to me after all is said and done. When we are sick, down and out, fatigued beyond belief, is it too much to ask that we can at least enjoy food?!?! SickTired LOL!!! I find it hilarious actually and just trying to keep a sense of humor about it all. My hair is coming in which is great....but it's coming in in all different directions, like cow licks! Every day is a new day, a new challenge, a day closer to being done with this all. Thank you all for your stories and sharing of your experiences!!!

PEACE!Heart

Dx 7/20/2016, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR-, HER2+ (IHC) Surgery 8/18/2016 Lymph node removal: Sentinel; Mastectomy; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 21, 2017 04:00PM CeliaC wrote:

Elem and Pamela - I also do not understand the radiation dosage or # treatments, or why some have difficult skin experiences vs not. Last of 20 Rads was today. Very fair skinned, but have no burn & only a very slight pink/irritation. Go figure! Did use Miaderm cream 4x a day & also prescribed Lidocaine 2% and Mometasone Furoate (articles indicate this is really good for preventing irritation). Miaderm not cheap at $36 or so per tube, but felt any $ spent to avoid being crispy was worth it. Like everything else with C, sometimes there is no rhyme or reason. For those who are having skin issues - ask your RO or Rad Nurse what they can give you to help. Hugs and best wishes to all.

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Mar 21, 2017 04:05PM annoyingboob wrote:

congrats celia c!! pow pow pow - take that cancer!! remember, continue to take it easy, as you may be more tired and pink next week than you are this week. happy healing!!

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 21, 2017 05:17PM Elem wrote:

Yay Celiac

So happy for you . Major milestone!

Dx 12/13/2016, DCIS, Left, <1cm, Stage 0, Grade 1, 0/3 nodes, ER+ Dx 1/4/2017, IDC, Left, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Mar 21, 2017 05:25PM Elem wrote:

Yes Annoyingboob,

The fatigue is hitting me like a ton of bricks everyday around. 2-3pm . My eyes just drop and I feel like I am drained. The goid news is , my skin is doing better . Still have rogue pain in and around incisions and nipple, but using pure aloe from my plants has eliminated the peeling, itching and burning. Using an ointment and some pure coconut oil at night on a non stick pad for the nipple... ahhhh relief! The fatigue was present last week after finishing rads , and only slightly the last week of it, but it seems more pronounced this week .I also started the tamoxifen 20mg. on Monday . Godd luck to everyone finishing up. One step closer to leaving cancer behind!

Dx 12/13/2016, DCIS, Left, <1cm, Stage 0, Grade 1, 0/3 nodes, ER+ Dx 1/4/2017, IDC, Left, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast
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Mar 21, 2017 05:39PM annoyingboob wrote:

im feeling a bit more energetic this week, so heres hoping you bounce back too. but give in to those naps and just let your body heal - its been a rough few months for all of us with lots of poking and prodding. my body just needed stillness and quiet and lots of sleep. had a super busy weekend, but im back to stillness and gentleness. we all need a little extra tlc!!!

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 21, 2017 07:30PM Mamasha wrote:

Congrats Celia!!!!you are DONE !!!

Dx 12/2016, IDC, Right, <1cm, 0/3 nodes, ER+/PR+, HER2- Surgery 1/3/2017 Lumpectomy: Right Radiation Therapy 2/5/2017
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Mar 23, 2017 01:11PM Pamela23 wrote:

I wanted to be proactive and knowing how tamoxifen is just a few weeks way, I decided to go to the GYN to get checked out. I also asked if I could have a baseline US of my uterine lining so I can tell if the drug has a negative effect as it notoriously does on many women. I just got back from the GYN. They found a polyp in my lining. She's not concerned with it being cancerous but say tamoxifen can cause it to grow so want to have it removed after I'm done with radiation and she'll do a uterine biopsy while she's "up there" to make sure everything looks good before tamoxifen. She said she wishes doctors would request an US of the uterus before starting this drug because the drug will thicken the lining and cause polyps and cysts to form and if they had a baseline, they would have more info on the changes. Just FYI when you are at that point in treatment.

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Mar 23, 2017 04:09PM misslil wrote:

It's hard imo to be sure of causality but a year or two after finishing my 5 years on tamoxifen, I did have a fairly advanced precancer found in the endrometrial lining after years of my gyn monitoring when it seemed to be thickening or 'fluffy' or otherwise questionable-looking. Wound up with a full hysterectomy of most everything down there.

Not sure if I was one of the cases for which this is an uncommon but known side effect of tamoxifen, or it was just my coincidental bad luck. I was happy either way that she was monitoring closely.

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Mar 23, 2017 04:56PM CeliaC wrote:

Elem - glad you found some relief for your skin.

Feeling some fatigue, but doing ok with only working 8 hours. Appetite loss is pretty bad - having to force myself to eat (or, rather Husband forces me to eat.) One more work day and then will be babying myself on the weekend. Hope we all get the chance to recuperate and rest up!

Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Mar 23, 2017 08:24PM Oasis2016 wrote:

Thanks ladies for all the suggestions for my growing anxiety. Had #20/25. 5 more to go!

The nice therapists put on an eye bag for me. It is infused with lavender and the smell does calm me down. And the ear plugs worked too!

I took lorazapam for 4 days and decided to skip today. Ear plugs still works!

Now my breast is turning red, especially on the side, it is a little painful to touch. Have been lathering miaderm, QV cream, coconut oil with lavender essential oil, and aquaphor.

Dx 6/21/2016, ILC/IDC, Left, 5cm, Stage IIB, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 7/21/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 8/22/2016 AC + T (Taxol) Radiation Therapy 2/27/2017 Whole-breast: Chest wall Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 23, 2017 09:01PM annoyingboob wrote:

homestretch oasis - you can do this!!! Focus on your breathing, continue lubing up, stay hydrated, and get plenty of rest!! You got this!!

Xxoo


Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 24, 2017 08:50AM Oasis2016 wrote:

ouch. Im getting sun burnt pain and headaches. Applied ice pack on the side and under the arm.

Dx 6/21/2016, ILC/IDC, Left, 5cm, Stage IIB, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 7/21/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 8/22/2016 AC + T (Taxol) Radiation Therapy 2/27/2017 Whole-breast: Chest wall Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 24, 2017 10:34AM CeliaC wrote:

Oasis - You are almost there! Sounds you like you are doing all you can for your skin. Hugs & Wishing you relief - baby yourself this weekend.


Dx 12/2/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/21/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/21/2017 Whole-breast: Breast Hormonal Therapy 4/5/2017 Arimidex (anastrozole)
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Mar 26, 2017 07:24AM Pamela23 wrote:

Misslil--am I reading correctly that you had BC before and had a mastectomy in the same breast you have it in now? I am so sorry you are going through this again.

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Mar 26, 2017 12:37PM - edited Mar 26, 2017 12:38PM by misslil

Pamela, yes, that's the case. I had mastectomy for DCIS followed by radiation in 2008, and last summer was found to have a new invasive area on the same side under the scar tissue from the mastectomy. Rare, but can happen it seems.

I had a 'lumpectomy' last month for the new issue following 4 mos of TCHP chemo for HER+ disease. It seems weird to call it that though, when I already had the mastectomy on that side. It may need a new name lol - mastectolumpectomy? lumpectomastectomy?

I start radiation tomorrow if things go to plan. It was debatable whether to do it again since re-radiation of the same area is uncommon. But most opinions leaned in favor and I'd like to feeling I am doing everything I reasonably can to avoid something coming back or sprouting up again in future.

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Mar 26, 2017 01:43PM Pamela23 wrote:

Misslil-So this is a new kind--the first was her2- and this one is her2+ and so close to the other one. I'm glad they are letting you do radiation again. Good luck!

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Mar 26, 2017 02:08PM - edited Mar 26, 2017 02:09PM by misslil

Thanks Pamela. I'm not sure about what I had in 2008 as far as it being HER2+ or not. I never heard anything about HER2+ at that time, I don't know if it was typically something they tested then without evidence of invasive disease?

The tests they did when I had DCIS pointed to more 'aggressive' grades/flavors of DCIS. That was among the reasons I wound up with a mastectomy which wasn't that common for DCIS, and also radiation which was very uncommon after mastectomy for DCIS. I also had a sentinel node biopsy. .

I'm ok with doing the radiation again, it was pretty easy on me the first time although I know there's no guarantee of it being similarly easy to get through this time.

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Mar 26, 2017 03:40PM Pamela23 wrote:

Did they have the Oncotype Dx test back then? I was grade 3 also but had the test done which made me be more aggressive and do chemo. I got the Her2 from your signature so maybe it was just residual they didn't get. I hope you zap the hell out of anything else and never have to go through this again!!

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/5/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/19/2017
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Mar 26, 2017 06:23PM - edited Mar 26, 2017 06:28PM by misslil

Iirc, they had that test but didn't use it with DCIS. Don't know if that was a risk-cost-benefit thing, or more that the nature of how the test worked wasn't applicable with DCIS.

I'm not sure they did the Oncotype test in my current IDC situation either. I chose not to ask, I already had path reports and dr opinions showing the new tumor as high grade and 'aggressive' type although thankfully caught pretty early.

I didn't want to keep hearing more about all that. As a two-time offender, I couldn't see any way I'd fall into a low-risk category for treatment measures or future monitoring. Wanted to focus mostly on what was possible to do to address this new situation, and where possible reduce risks of anything coming back in future.

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Apr 7, 2017 06:19AM cindyanne wrote:

Misslil I am in a very similar situation. My first was actually 12 years ago and ER+ This time I was diagnosed in December 2016 with ER-Pr-HER2+++ in the same breast. They originally thought the mass was small but after the masectomy found it to be at least 6cm which is why they are considering re radiation. I am currently getting ready for TCHP #5 and will see the MO the first of May. I also had quite an easy time the first round of radiation but the residual pain lasted many years and in fact is partially why I did not catch this second diagnosis. I want to do everything possible to prevent this from happening again, which is why I chose a double mx. I am concerned about the risks involved with re radiation. What about your lungs and bones?

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Apr 7, 2017 03:02PM - edited Apr 7, 2017 03:05PM by misslil

cindyanne, sorry to hear about your experience and the new situation.

In speaking with my radiation team and breast cancer team generally, I have not been given to understand there is material risk from radiation to the lungs or bones. That may be a situational thing for each person based on what area is being treated, what the angles are for the beams, etc.?

My issue, both times, has been on the left side which has raised some issue about avoiding heart damage. The first time they were able to angle the radiation to minimize that risk as much as practicable. The second time, they briefly considered having me do the breath-hold technique to further reduce the risk to any heart concern, but decided it was not necessary after they worked out their final gameplan and modeled how the beams were supposed to go against the area being treated. Once I get through the radiation treatment, plus having had chemo / Herceptin, I imagine I may need follow-up for some time to check for long-term damage. During TCHP, they've had me do echocardiograms every 6-12 weeks; not finding anything interesting to date.

My issues both times have been a little under the skin on my left side some distance above the chest surface ("4 o'clock" for the last one). I may well have gotten different advice and risk information had my issue been closer to the chest wall.

Best wishes in your case


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