January 2018 Surgery group! Please see updated list in thread!
Comments
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Good luck, Nancy. I am down to my last 8 of 30 treatments. My skin is holding up pretty well, though I'm starting to get some pain in the underarm area. People have recommended Miaderm lotion, and I just got a tube (it's a little pricey but is made specifically for irradiated skin). Otherwise I've been using Calendula lotion, which is pretty good.
Hope your radiation goes smoothly with minimal discomfort! If you haven't posted on the March Radiation group thread, you might want to check it out.
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philaflash and hopefulac- thanks for the great advice. I tried a scrambled egg without the yolk. I was able to tolerate it. I went to Publix and bought one of a lot of items. I decided I would experiment. I found I could tolerate boiled potatoes, yogurt, rice and cream of wheat. I tried the Ensure Enlive with crushed ice and it was palatable. Unfortunately I make organic soups every couple days and I haven't been able to tolerate any of them. They all taste metallic. I'm very happy today. So every couple of hours I'm trying to eat a small amount of food. It's working well. Thank you ladies for your help and I appreciate it so much. Have a wonderful day
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Nancy, wishing you the best as you start the radiation. Keep us updated on how you’re doing.
Jo, I’ve been keeping up with your trials regarding chemo. I hope you find some food that will work for you. My kidney surgeon wants me to have another 2-3 weeks recovery before chemo starts.
I meet with the MO tomorrow to get the details on the chemo. Last appt, he said there are three regimens to consider, but didn’t go into much detail. Maybe he was deliberately being vague til after the kidney surgery. I’m waiting to hear back from another MO to get a second opinion. She has conducted a couple clinical trials on Triple Negative and I just want to make sure I’m on the correct path.
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Thanks Miranda. I am on that thread too along with moisturizing/ treating radiation burns. How long did it take for you to feel any symptoms if any? I just got back and it was a breeze but it's only day 1. I found this spray called Solar Recover when I was in Florida a couple of years ago and used it on my extreme sunburn and it worked wonderfully. It is all natural ingredients and includes calendula. I also like the idea of a spray rather than a lotion, the less I have touch sensitive skin the better. But we will see. Have a great day and thanks again.
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Hi Everyone!
I am brand new to the site but I had a bilateral mastectomy on 1/16/18 after being diagnosed with Stage 2A infiltrating ductal carcinoma and DCIS : 3 single overlapping tumors in the right breast, largest 2.4 cm, highly ER/PR positive, HER2 negative, histological grade 2, oncotype dx score 35. No node involvement and clean margins but chemo recommended as a precaution based on my oncotype score. Luckily I was able to skip the radiation. I have expanders in place and fully expanded. However, I have been pretty much paralyzed with the decision to move forward with chemotherapy and now must decide in the next few weeks what to do. I am 48 and feel really, really well so it's hard to just jump off a cliff as a precaution but I know I need to for the sake of my 11 year old son. I am sure many of you women have already began your own protocols of chemo and I am just looking for some support. I am pretty scared and recently realized that I need to talk with some people actually going thru the same issues. Two different doctors have recommended two different protocols, one 6 months of ACT, the other 3 months of TC. I know the risks of both... any thoughts or pointers?
Much love to all the January 2018 girls out there, stay strong!
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Nancy - on to the next step!
I am not likely having radiation, however my mom did. She and I had the red-head skin, sensitive as heck. My mom and I both sunburn in about three minutes. She tolerated radiation very well. There is no reason to think you won't as well. 0 -
Nancy, I didn't have any real skin symptoms at all until around Week 4, and it's mostly some pinkness and pain in the underarm and occasionally the breast. Generally my level of fatigue has not been bad at all; just a little more tired at night. My implant also feels hard (skin swelling around it causes that, I guess). Only this past weekend (before I entered Week 5 of 6) did I feel any need for pain relief. I took some ibuprofen. It doesn't help that there's a not fully healed incision in the armpit.
I know what you mean about touching the sensitive skin. I kind of hate massaging/moisturizing the area.
Best to you and all the other January ladies. It's good to be able to share this experience.
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maggie2- thanks to philaFlash and Amburt- I found a few food items I can tolerate. I'm eating small amounts of yogurt, potatoes, rice, scrambled egg whites, Etc. every 3 hours. So I'm experimenting with different foods but no complaints. I find when there is an issue I go to these sites and for the most part I get very good feedback.
I'm glad you're doing well from your kidney surgery. I'm sorry I cannot offer you anything constructive as far as treatment goes because I just don't know. Hopefully, you have complete trust in your team.
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Thank you for all the encouragement and info Miranda and toughcookie it's very helpful. I'm trying to stay positive and hoping for the best. Miranda hope you get some relief soon, hang in there it's almost over.
Maggie hope you are feeling better. Hope your second opinion has some better options for you. Thank you for the well wishes.
To all the girls going though chemo, I wish you nothing but the best.
We will all come out of this just fine because we have each other's backs. Gentle hugs for all.
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Nancy I had 30 radiation treatments 1-1/2 years ago my advice is to not skimp on the lotion. I would bring the lotion they gave me and apply it in the changing area right away after I had my radiation. I am fair skinned and only had something minor redness towards the end. My aloe plant was great I used a leaf each day. Thinking of you you today each day gets easier. Gentle Hugs. Jacqu
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Zoisite, Thank you for that advise. I also have an aloe plant that I was going to use. I like the natural route when possible. They put enough toxins in my body without me adding to it. I will certainly try your advice and anyone’s that sounds good. I’m all about being prepared and preventative. Have a great day! And as always thank you and gentle hugs.
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Hi gratitudeandattitude and welcome. I understand how you feel- I really hoped I wouldn’t need chemo and it was difficult hearing that it was recommended when my oncotype score was in the low middle (it was recommended because of my age and BRCA gene). I had 2 opinions and they were the same with recommendations for the same treatment (4 rounds of TC). I know it has to be even harder having different recommendations for treatment. I tell myself that I want to do everything I can to get rid of this and prevent a recurrence, and I don’t want to regret it later. It’s a difficult and personal decision though. If you want more info on what chemo is like, some of the other threads are really helpful (starting chemo in January, starting chemo in February, etc). Good luck!
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Hi gratitudeandattitude I also had a high oncotype score and was recommended chemo as a precaution. I was given the option of ACT or TC or CMF!! The problem with the oncotype test is that it will just be an indicator if chemo is warranted or not. It doesn’t say which chemo. I think you did the right thing by getting a second opinion. I went to 2 top New York oncologists and they both said ACT would not be necessary because the risks outweighed the benefits in my situation. You have to assess the risks and benefits of each and you will come up with the answer that works for you. Sometimes talking it out with a family member or a close friend helps in the decision making process. I ended up choosing TCx4 and I start Monday
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hi, Nancy
Hope your session went well. I read here that aloe gels and galaxal cream can help with radiation burns. Some also suggest essential oils like vitamin e oil.
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May07, I have also been given the options of ACT, TC, or CMF, though for more cycles, even though we have different diagnosis. From some of your previous posts, it looks as if you had decided on CMF originally. I’m really struggling with which chemo path to choose. What helped you in deciding to ultimately go with TC?
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Thank you NVDobie. My RO office gave me Aquaphor and miaderm samples and also told me that Aquaphor now comes in a spray which I picked up on my way home from my treatment. I also have my aloe plant, which I love. No burns yet but I'm trying to stay ahead of it. Have a great day!
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Aquaphor spray? Brilliant! I am going to look for it
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Hello,
I have had a double breast cancer/reconstruction nightmare experience. I've had 6 surgeries in the past 22 months.
I am FINALLY to the end of my fill ups with my expanders, only to have the right one droop a very noticeable amount lower than the left. I asked my doctor if he would fix it, he said "No" because it has only been 2 months since I had them put in.
I have seen on this site other women with the same problem, and I am hoping someone can tell me what is the best "lift" bra to wear to correct this? I have really REALLY enjoyed not wearing a bra this whole time, so I am not pleased with the thought of having to wear them again.
I won't be having my permanent implants put in until November (having a different surgery in May which puts my final surgery date back)
I am VERY unhappy with the way they look.... I don't want to look this way until November.
Thank you in advance for any help you can give!
Angie
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Wow Angie, I didn't even know this was a common occurrence, it has not happened to me yet, but I am only 2 months out and have a few months to go sure to radiation, just one more thing to worry about:(. I saw a different RO last Monday worry my weekly check in and he said 3 months after radiation is ok, which is better than 6 months... if things go well maybe mid August but I would not be happy going that long with one side dropping, sorry you have to deal with that on top of everything else.
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How is everyone from the January group doing? I had my right exchange on Monday and I've had a lot of mid back pain since the surgery. Chest area is fine. Has anyone else had this problem after surgery?Makes me wonder how they handled me on the operating table..
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Hi, over70. I'm sorry to hear about the back pain; hope you find some relief.
I'm doing OK, had 30 rounds of radiation and recently started on arimidex. The radiation caused contracture around my implant, and I will need another surgery to fix it, I think in the fall. Meanwhile, it's a fairly hard thing on my chest, and I'm not happy about that. Considering what some of our sisters are going through, I guess it's not that bad, but still..!
Hope to hear from some other January women!
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Thank you, Miranda. Hope it works out for you with fixing the implant in the fall. It sounds very frustrating to have that contracture.
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Thanks, over70. It really has been a whirlwind of a year, strange to think the cancer experience has only been going on since January. Such a life-changing experience, it feels like it's been years!
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miranda- nice to hear from you. We were in the January surgery group together. I was thinking the same thing about time. In some ways it's been a very fast-paced six months since diagnosis and in other ways there's moments that feels like they last forever. Can't help with the Reconstruction I chose to go flat. But good luck to you.
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Hi January group wondering how Nancy and the others that had radiation are doing. A few of you had to have chemo too how is it going? I hope it is not too bad. I finally will get my exchange done end of June. I had to go slow with my fills since I had radiated skin from my first round of BC. Gentle hugs to you all
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Hi January group....so good to get your posts in my inbox. Jo, I only just saw your message back in April, I am doing fine and and have often thought of you all. I had a double mastectomy with no reconstruction. Did not have to have radiation or chemo and have healed quickly. It is still a shock seeing myself in the mirror, I guess in time I will get used to it, but apart from that, I wear knitted knockers in my bra and look like my old self with clothes on. It is a tremendous relief not to have to deal with doctors and hospitals until I have an annual checkup in January. I am enjoying work again and living more in the moment these days. Love to you all, don’t know how I could have got through it without you support. Jude0
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Good to hear from you, jo, judeshome and Zoisite! I agree, this group was a great help to me through my surgery and after. One thing that is helping me is yoga classes twice a week, free at the hospital where I'm treated. Trying to "get ahead" of potential side effects from the aromatase inhibitors (so far, nothing bad to speak of).
Best to all!
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jude- I'm glad you're doing well. I concur with the others the January Surgery group provided so much help with our surgeries . The support I received before during and after from the January Surgery Group was my lifesaver.
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It is so nice to see so many familiar names. I also agree that the January Surgery Group was a lifesaver! I just had my Chemo #3 of 4 T/C yesterday, so only one more to go. Yippee! I've been cold-capping, icing hands, feet, and sucking on ice chips during the sessions. It's quite a production when we show up. Haha. I saw the plastic surgeon this week and he's thinking the implant exchange with necessary fat grafting will be mid August. What a long journey since last November. I hope all of you January ladies are recovering well and trying to enjoy the summer.
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on my way to the hospital for the sentinel node isotope and lumpectomy. I’m scared but god will be with me and this group will be too
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