Lumpectomy Lounge....let's talk!
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Cindy - ChiSandy explained it well. I’d opt to a Mammoprint test to determine whether you need chemo or not. I was told I was getting a mild type treatment too. I think that just means minimal rounds, like at 4 opposed to 8 or 12 rounds. There’s nothing minimal about chemo - I’ve lost my hair on day 14. However in my case I assumed my 27 score would have put me at high risk. Without chemo my recurrence was 18%, -with it was 8%.
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CindyNY, I agree with some of the others, you may want to get a second opinion since you are on the low side of mid range. Don't feel rushed. When I was anxious about waiting 4 weeks for my surgery my breast surgeon told me if I considered the cancer had prob started 5 years earlier as a single cell a few weeks weren't going to matter. It's an emotional emergency not a medical emergency is another quote that helped me along.
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ChiSandy, Blair2, gigibee - thank you all! I had read about the mammaprint test, and when I see my MO on1/9 (she's on vacation until then) I'll request it.
When I met with MO on 11/21 and she didn't have my Oncotype score yet, her last words to me were: the worse case scenario, you get your radiation now and if needed we deal with chemo later. I'm calling RO tomorrow to see if I can proceed with rads. (tattoos done & appts are all set)
I'll sleep good tonight!
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Sleep well, CIndy--glad to help. Hope all goes well.
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GREAT NEWS YESTERDAY!!! NO CHEMO NEEDED. Oncotype test came back at 21, oncologist stated that chemo would only decrease my chances by 2%, husband and I felt the 2% was not worth the side effects. He strongly recommended the tamoxifin, which I will start as soon as I have the radiology oncologists approval. Soooo happy for no chemo, and they feel they got all the cancer. YAY!!!
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Vampeyes, congratulations! That is terrific news! I just finished radiation and tho I could start tamoxifen now my RO is ok with waiting til after the holidays. So that's my plan.
Cindy, again I am so happy you made the choice that is right for you. Let us know how we can help.
Holiday hugs to all!
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Yay Vampeyes! So happy for you. I just finished rads last week - finally turned the SE corner too....starting on meds in January too.
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My RO called me today, woke me up lol, asking if I spoke w MO re: chemo. I told her I did, and I'm really not on board with it...I need way more info. I'm going ahead with Accelerated Hypofractionated WBI. I'm at peace withhis decision. Thank you and HUGS to all!
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Good choice, Cindy. If you were getting the 33-day protocol, the timing would be trickier, but if like me you're only getting 16, we're talking just a 3-week delay, well within the chemo-starting window should your second opinion (or MammaPrint) recommend it. I didn't get the WBP, though--rather, the PBI (which has identical overall survival for women >60); if I were to get a local recurrence elsewhere in that breast, I could get another short PBI protocol because it would be aimed at tissue that hadn't been irradiated. (You can't irradiate the same tissue more than one "course" of treatment).
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Hi all - haven't been on in a while. Back to work, chasing 3 kiddos, and Christmas = one tired momma
. Have a question. Finished chemo in April, LX in May, finished rads on August. Still have some tenderness and itching around incision for LX and SNB. Is the tching normal - hoping still healing, but any little thing sends my mind to the dark side. Just wondering if anybody else has had this experience. Always praying for you amazing women!!!
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HI ML. I am only a few weeks out but do still have a bit of tenderness at both sites + itching at other random places from the radiation. My RO said I should plan to moisturize twice daily for a year and also do exercises twice daily for six months since scar tissue is still there. But if aloe isn't working you can always ask your doctor. And I think Johns Hopkins still has an online Q and A site you could ask.
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CIndyNY, sounds like a plan , glad you are feeling better about it all.
Yay Vampeyes that’s great news . I avoided chemo also when my Her2 came back negative after being positive on the biopsy, and then I had a low oncotype score of 15.
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Santa's elves have been hard at work here in the north Georgia mountains. DH & I arrived at our rental cottage today. We won't have a tree, but we do have a wreath on the door. Tomorrow we're taking our two older kids to see Star Wars. Then we'll get my youngest on Christmas eve so we can all spend a few days together.
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Merry Christmas to all!
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Poodles, how wonderful!! Are you feeling like you can breathe now? Love the Christmas poodle light. Merry Christmas!!!
HUGS!
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Lovely hearth and poodle light, Poodles! Christmas in the country is something special.
ML, I am 2-1/2 years post-op and my armpit still sometimes itches. Nothing to worry about.
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ML1209, I finished end of July this year. I still have numbness and itching. Which makes no sense. Because if I'm numb, I should not feel an itch.
I suspect (no hard proof) that what feels like itching is actually the tingle of nerves un-numbing and my body translates it as an itch. But there is no skin irritation at all, no redness, no bumps or peeling anymore. I think the itch is healing that feels weird. It's a theory.
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Hello, I am new here, looking for ways to support my wife by helping her get the information she needs to make the best decision she can about her treatment plan.
She was diagnosed with triple negative insitu breast cancer 10/20/17, she had a lumpectomy and sentinel lymph node removal 11/27/17. She is still in pain, limited range of motion in her right arm.
Her margins are clear, lymph nodes not affected, tumor is 1.5 centimeters
Stage 1, grade 3, we met with the medical oncologist yesterday, who is recommending 6 rounds of chemo using The strongest available. He wants her to start ASAP. We are scheduled to meet with the radiation oncologist 12/28/17. We asked about the OncotypeDX score, and were told that it was not relevant to her case.
She is being treated by Kaiser in California. We are overwhelmed by information and everything feels a rushed.
The logic for chemotherapy is:
If 100 women have her type of cancer 73 will live another 10 years(she is 60). The 27 that die in ten years will die of all causes, not only cancer. The oncologist thinks that chemo could save 4 more lives.
The math kills me! But isn’t it a less tha 4% chance that the treatment will save her life?
What am I missing? Thanks.
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Hopeful_husband, hi. Yes, I think you're right; it's increasing her odds of survival at 10 years by 4%.
But another way of looking at 4% is that an additional 1 out of 25 women is alive at 10 years because of the chemo. I find reducing those fractions sometimes really changes my perspective on what the percentage means.
fwiw, I suspect the calculator tool your oncologist is using is either this one of very similar: http://www.predict.nhs.uk/predict_v2.0.htm
I'm sorry to hear your wife is still having pain & limited range of motion. Have you consulted a physiotherapist and been prescribed a pt / stretching routine?0 -
Have been trying to catch up to posts over this long holiday weekend.
hopeful_husband - Welcome! I had issues with limited range of motion and after obtaining a referral to a physical therapy lymphedema specialist for eval re: lymphedema risks and exercise plan to increase range of motion had positive results. Did the group treating your wife give info on any gentle range of motion exercises that could be done shortly after surgery?
CindyNY - My Oncotype was 25 and surgeon (specializes in BC surgery & worked on developing the sentinel node biopsy technique) stated it was grayest of gray & he was comfortable with no chemo. I took his advice. Had 20 radiation treatments and now on AIs.
Vampeyes - Yippee for no chemo!
Poodles - Great Poodle CM decoration. Our family had a toy poodle (my sister's pet) many years ago.
Re: Tenderness - One year post-surgery & rads ended 3/31/17 and I still have some tenderness. RO advised tenderness could linger for quite some time. Have to be careful to not overdo things.
Gentle hugs and healing thoughts to all who need them and Merry and Happy Holidays to All!
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Hopeful, if your wife's cancer is Stage I, it's not "in situ" but invasive. In situ is Stage 0, and even if triple-negative (much commoner in in situ than in invasive breast cancer) chemo is never given. I suspect the confusion might be that even though she's Stage I (and it sounds like IA at that), they also probably found some "associated" in situ cancer. When there are both in situ and invasive tumors (and/or more than one grade), the more advanced and more aggressive tumor cells drive the treatment decisions. Invasive triple-negative, especially grade 3, is fast-growing enough that chemo is likely to kill the cancer cells. And because it is both hormone-receptor-and-HER2-negative, neither endocrine nor targeted therapy are available. And it is too early (thank goodness) for immunotherapy to be necessary. So she will need surgery, radiation and chemo. The flip side of that is that five years after surviving triple-negative, the risk of recurrence is no greater than her risk of getting breast cancer was in the first place.
OncotypeDX is performed only on ER+/HER2- tumors, not on triple-negative. So the Cancermath and/or EndoPredict calculator apps are the ones used to determine the benefits of chemo--as well as the relative benefits of "old-school," second and third generation chemo regimens. That 4% means that at 10 years out, at her age and with her tumor statistics plus chemo she is 4% likelier to be alive than if she'd not had chemo. It's worth it, IMHO. 60 is young enough to be able to withstand chemo, and with a long enough average life expectancy (all other things being equal) to protect.
For her arm pain & stiffness, she should request a physical therapy referral, as well as a consult with a lymphedema specialist if there's one in your area. It's important to try to gently and gradually--but consistently--try to regain and retain range of motion. It's not uncommon to still have pain & stiffness this far along, but it's still a good idea to rule out other causes of that (such as "cording" and lymphedema) before proceeding with targeted exercises.
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Merry Belated Christmas Everyone!!!
I wanted to share a spray with you all that I have found helped the swelling in my lymph incision and my breast from the surgeries. It's called Peri Spray, you can make your own, pintrest or google the recipe. It's essential oils, a friend gave it to me to try on morning and by that night my lump from lymph fluid build up had reduced. Now a few weeks later it's nearly gone! Soooo happy. It has also helped heal my incisions and reduce the swelling in my breast.
As for itching, I have found that lavender oil mixed with a carrier oil works wonders!
Hope all is well,
Cheryl
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My MO told me to be careful with lavender if taking letrozole.
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Good morning ladies,
A week from today, I'm going in for an out-patient lumpectomy on the breast and the axillary lymph node(s). I had my last full chemo (HTC) on 11/16/17 but am continuing on with just Herceptin every 3 weeks. The "lumps" went from almost 3cm to almost nonexistent from late July, 2017 to November 2017. So, they are going in to remove the biopsy clips and gather some samples for pathology.
I'm loosing sleep just thinking about which kinds of rad treatment are in store for me. In addition, they've delayed having me tested for bone density. I had a hysterectomy just this past January, so I've been a bit busy this year. Thank God that was benign but just an enormous fibrous growth. Thought I had a soda/beer belly (I don't drink).
Naturally, my work hours are supposed to increase in January and going forward, right when I have surgery, not to mention radiation treatments. I just hope that at least I'll wake up from my lumpectomy without tubes. Hugs to all of you!
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Sweet6217 - you've been through a lot already! The lumpectomy isn't bad. Your under sedation, and when you go home you're given pain meds. Follow your BS directions. Rads won't start until you're healed up, usually 4+ weeks out. You can do this!
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sweetp - what good news about the effect chemo had on your lump! Cindy is right that the lumpectomy is not bad. However, it is still major surgery so taking it easy for a bit is key to feeling well sooner. Many of us found that the underarm incision for the lymph nodes was the more problematic one. As for rads - I work from home so I was able to keep up with my work during my treatments. A friend who is a teacher scheduled her treatments for the end of the day so she could go straight home. My only SE from rads (aside from some pinkness and itchiness) was extreme fatigue.
Best of luck to you!
MJ
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I awoke from lumpectomy with no drains, and my airway & vent tubes were already out. One push of Fentanyl in my I.V.; the only other painkiller they gave me was a couple of Tylenol, and not even extra-strength. No painkiller prescription, either. They pulled my I.V. pretty quickly (and I wasn't even wheeled to my car). I was home before dinnertime, on Yom Kippur, no less (I broke my fast with the mini-bagel & schmear they gave me in my post-op roomette). I went out to dinner the next night (my sis drove), walked 1/4 mi each way to & from brunch & the beach & home on day 4, and drove that night. Grocery-shopped on day 5. And just over 2 wks post-op, I drove 90 mi. each way to & from a concert I played in Rockford (my son & my singing partner carried all my stuff to & from the car). For three glorious hours, I forgot all about cancer.
I was advised to buy button-front PJs & shirts because I would not be able to pull stuff on overhead, and to sleep downstairs because I would have "profound fatigue" and be unable to climb stairs. Well, the next day, without thinking, I pulled my PJ top up over my head without unbuttoning it...and I was fine. And I went back upstairs to sleep in my own bed. My case may have been unusual, but though it wasn't like getting a tooth pulled or cataract removed it was much easier than I'd been led to believe. I think I was in rougher shape after knee arthroscopy and laparoscopic gall bladder surgery.
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Girls - I have questions on radiation shrinkage. For those of you who have gone through radiation, how did the shrinkage effect your breasts? Did it change the shape in any way? Did the breast stay the same shape, but become smaller in circumference? Did your breast become flatter in any way? Did it shrink the nipple to any different shape or size? What were any disappointments you may have had other than the sun burning side effects?
These might be silly questions, but I’m trying to determine what radiation might do to my own breast. I’m hoping it might change the shape for the better, but there’s probably no hope
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Hi Blair. I'm only two weeks out, but so far my breast looks exactly the same. I read such horror stories that I was petrified before starting RADS, but my RO refused to say my breast would shrink. She used the word "perkier" (ha!) so maybe you'll get your wish and any change will be for the better!
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Blair2, I didn't notice any change in size in my radiated breast. I'm small so that may make a difference. I'm 3 years out from ending radiation. The only changes in my breast were from surgery.
HUGS!
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