Lumpectomy Lounge....let's talk!
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yes you are 👍Lucy. Behind you 100%. I might regret not having chemo as well but for methe risks were great and it very well be that some other health issue will eventually do me in . In the mean time I keep plugging along 🤓
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Miko, I can't imagine that was an easy decision to make. Just don't look back and try to second guess yourself. You made that decision based on all the information you had. That's what we all do.
HUGS!
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Miko, you're my age.. 67.. My first MO wanted me to have Chemo and very upset when I said no, went to another MO and she said at our age, the risk outweighed the benefits... I have no regrets
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tyty Peg and IHG: I have tears in my eyes as I write this. Even tho I try to be brave with the decision I made and with no regrets. There is some doubt and it seems I am always making excuses for not going the chemo route. Tyty both, emotionally your kind words have really boosted my mental health. Stayed home from work today to deal with pain and fatigue 👍👌💕💕
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Miko, it's hard to keep an even keel when you are in pain and experiencing fatigue. Don't beat yourself up over it. Do remember that not only does radiation often cause fatigue but just having breast cancer itself causes it. You've been through a lot in 4 months. It will get better!!
HUGS!
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tyty Peg: need to take another day off to decompress 👍 It has been exhausting
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D’oh! Last week I ordered three pair of progressive-lens glasses from Zenni Optical online (their seven-buck frames—including single-vision lenses-- didn’t float my boat either shape-or-color-wise, but in the $15-25 range I found three pair I liked: purple, maroon, and clear emerald green. Even with progressive anti-glare lenses they came out to around $50 each. Didn’t feel like paying $100 extra for photochromic lenses—that seems to be the add-on cost at most opticians, whether brick & mortar, midrange online with some freestanding stores, or deep-discount online-only).
I didn’t know my pupillary distance, and couldn’t read the millimeter scale on my ruler, so I used Warby Parker’s tool of uploading a photo with a credit card (or any card with a mag stripe) level beneath my nose, and it came up 55 mm. Seemed a tad small but w/in the ballpark. Then—and don’t try this at home, definitely not late at night—I mis-entered the details of my prescription. The first (maroon) pair arrived today (they make them in China, ship them to Novato, California to clear customs, and then ship to the customer). As I feared, the prescription was all wrong (Oops—I'd misread my prescription card and entered my Cylinder value as -1 rather than +1, and learned my PD, per an emergency call to my optometrist today, is 60)—but boy, did they look great! I was able to cancel the other two and will get the 100% store credit code for them tomorrow; as to the pair that arrived today, I have to mail it back to Novato tomorrow and they will e-mail me the store credit code for them when they get them.
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Hi there
I had stage 2 idc her2+ lump removed 1cm..all tissue ckear lymph node removed to check also clear. I don't want treatment. .radio chemo and Herceptin and hormones therapy. All was clear with%80 all clear with no treatment. Am i reaaaaally silly or has anyone out there made it through similar situation ?
Cath
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I am not sure if i am in the right section..sorry but curious about others w Her2+estr +prog + age 38.
No treatment wanted as all tussue syrroundung node and tumor 1cm clear. %80 all ok with no treatment so im wanting to run with this and dietry pump my body with all i can. With treatment it would give a %17 ..still not a def.no return result. Anyone still ok after same ?
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Cath, the 5-year survival before for HER2+ breast cancer was 40% before Herceptin was developed. We all get to make our own choices, but i wouldn't want to mess around. When you see people who have declined the best-available treatments and done well, they are usually ER+ PR+ HER2-, the easiest kind of breast cancer to beat with lifestyle changes.
Radiation is a walk in the park for most people, btw.
Aim to make choices you will not regret, whatever those may be. Good luck!
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Miko - every woman and every case is different. You made the best decision for you and your doctor supported that decision so DO NOT have regrets. Try your best to put it behind you and have a positive attitude -- that makes a huge difference. We're all rooting for you!
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Wow triple positive, stage 2, and only 38. I'd be on that chemo-Herceptin-AI train so fast it would make your head spin. Cath, you have potentially 50 years ahead of you. You only get one chance to get this right. Certainly you have to make the decision you can live with, but I think you're playing with fire.
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Cath78, Before deciding against all treatment, you might want to research how triple positive breast cancer works. You are young and it is usually advised that you get chemo, Herceptin, and radiation plus Tamoxifen. Read Dr Susan Love's Breast Book. Lots of good information there. Make sure you get all the information possible from your MO. Get a second opinion even. Decide what your goals are. Is your cancer considered aggressive? My situation was different from yours, aside from me being much older. If my tumor board had recommended chemo, I would have done it because my goal through all my treatments has been KILL CANCER. Only you can decide what is best for you. Just make sure you know the pros and cons of each treatment and then make your decision. Once made, don't look back.
BTW, please update your profile and make every single item PUBLIC via the SETTINGS Tab so that your information will show at the bottom of each post - that is vital for us to answer your questions. We'd also love to know where you live.
HUGS!
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Cath78 - I agree with what mustlovepoodles and pontiacpeggy said. You need to make the decision you feel comfortable with but really listen to what your doctor says. My oncologist explained that though all of my margins and lymph nodes were clear (which is a very good sign) cancer cells can travel through the bloodstream. The point of chemo is to eliminate any of those wandering cells. Radiation is targeted on the immediate area and eliminates any cancer lurking there. I was not happy about having to have both treatments but neither was as bad as I had feared.
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Cath, at age 38 I would give it all I have got to survive. Herceptin is such a miracle for HER2 + BC. Radiation is not bad at all. Why not check out the Triple Positive thread? Triple Positive Thread
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Whatever one decides regarding their treatment you have to move on and not look back or second guess. I am much older than many of you but I just went along with all the treatment my BS & MO suggested. My sons friend is 30 has same diagnosis and has decided alternative medicine and diet through a Dr. in Mexico. That decision would scare me. I've also got my faith to help me through! Love y'all
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My goodness, I didn't realize how behind I've fallen with all the posts! I've been catching up, but still have a couple of pages to get fully caught up.
I've just been super busy lately. DH and I went to San Francisco for a week and just got back Monday. I've also been going to the art studio or clay classes several times a week. I'm totally enjoying not having dr appointments or treatments right now. I saw my MO a couple of weeks ago and he changed my AI. I'd been on generic Arimidex but have now switched to generic Aromasin because of joint and bone pain. I think I"m going to have to try the third, Femara, however as my insurance has Aromasin as a tier 4 drug which means my co-pay for the generic version is $379 PER MONTH! I'm seeing a bit of an improvement but really can think of so many more fun things to do with $400 a month!
Reading back through all the posts, it takes me back to trying to make my decisions, make sure I made the right decision, and really having to weigh so many different elements, tests, and bits of advice. In the end, it is our own individual decision and I firmly believe that once we make the decision that is right and best for US, we shouldn't look back or second guess our decision. I read Sandy's post about doing all we can vs all we should, and I do agree. It's just that there is no 100% shot that what we do is what we should. Hopefully the future will confirm that the decisions we make are right. Some might think my treatment was overkill, but for me, with the results of genomic testing, and advice from the team, I'm at piece with my choices. I just wish the damn hair would grow back faster! :-)
I'll keep reading in between throwing pots but hope all are hanging in. To all the newbies, welcome to this thread, it has helped so many of us get through a really bad time in our lives. Peggy, again, thank you for being a constant here, and for so many of the others like Molly, Sandy, and Moondust.
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Dara, glad things are good. That's an awful co-pay for your aromasin. Good luck! Thank you for the kind words.
HUGS!
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Hi Peg: I got my swell spot, it really seems to help with the discomfort. I decided to take off one more day and be comfortable enough to back to work on Tuesday. Tyty everyone for your suggestions and support
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Miko, good idea. Glad the discomfort is lessening. Hope you enjoy the time off.
HUGS!
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Cath - Only you have the final say on what treatment you get. I had already had a lumpectomy and partial breast radiation when HER2+ was found. I'm healthy enough that I think the chemo cocktail that my oncologist gives pushes me from 70% to 98% survival rate in 10 years is worth the chemo, nasty as it is. Suggestion - talk specifically to your team about your triple positive status and check into the "triple positive" room. (I just noticed someone above me also recommended that group.)
Week 3 treatment this morning. I felt fantastic the first week, crashed the second weekend but am ready for week 3. Have paid more attention going in this week - kept the laxatives up all week so I won't get so stopped up and bought nexium for heartburn. Took me two weeks to realize that what I was defining as nausea was actually heartburn. Really am trying to pay attention to my water intake and getting some exercise, even when the couch looks good.
This is not fun but WE can do it!
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Dara - https://conquer-magazine.com/category/breast-cancer/. There is some financial help out there with co-pays. See post on this thread about Feb. 9th. My friend got big grants from a foundation in GA to cover hers although we live in AZ. Also check with your team about possible financial help with drugs if you need. C should leave us broke as well as sick.
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Go Taco! Keep up the positive spirit. Sending positive vibes to you
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Cath - I also have triple positive BC. This is the most agressive type of BC. Mine was a Grade 3 which is faster growing. Chemo is used to kill cancer cells that may be in other parts of the body, whereas radiation is used to kill any stray cancer cells in the area of the tumor.
The receptors are what makes it different from the other types... Many people have ER/PR positive and this is treated with a hormone suppressing drug that you will take from 5 - 10 years... The HER2 is a growth hormone. When this receptor is positive, the cancer replicates much more quickly. This is treated with Herceptin, which is an infusion like chemo and is given for a year.
Before making your decision, read about all the treatments and the types of cancers... This web site explains it all the different aspects of the disease and treatments. It explains the drugs one by one, with the possible side effects and how to handle them.
Please think long and hard after you get all the information. As has been said earlier, you are young and you have many years ahead of you.
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All you lumpectomy lounge ladies are amazing! So much information on here. I had surgery February 7th and feel I am doing good. I go back to the BS on Monday and the rest of my journey will be planned out for me then.
I am feeling 90%. I am respecting the arm and not over doing it. I still keep icing that area from time to time during the day. Sleeping well, driving and just taking my time with the housework. I have taken several baths but I'm not sure when I can shower. I washed my long hair in the kitchen sink yesterday and was able to dry and style it myself. (Oh the little things!)
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yeah Vargadoll: u go girl 👍You are on the way to recovery from your lumpy. Hang in there and you will be ok. Take this time to rest and recoup, sounds like you are on the right path.
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Varga, my BS’ NP told me I could shower as soon as a couple of days after surgery so long as I protected the incisional areas (I have a handheld showerhead & diverter from when I had knee replacement surgery). And at about a week it was safe to let the water run down over the Steri-strips, since they would fall off when they were good & ready. And they did.
If you can treat yourself to a shampoo & styling, or mani-pedi (make sure they don’t trim the cuticles on your right hand), it makes a world of difference to get pampered—and makes you less likely to overindulge in “retail therapy” as well as sweets. (I succumbed to the lure of Hoosier Mama Pie Cafe—or various patisseries—en route home after every radiation treatment and I am certainly paying for it now).
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Well I made it! Thirty-three radiation treatments and a very burned boob.....but I made it! Here's to getting all this skin healed up. You guys are such an inspiration, I love hearing your stories and realizing I am not alone!
I have a question for you all. I am to start Tamoxifen on Monday, what time of day do you all take yours? I will be working and wondered if it is better to take it in the morning or evening.
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Mellang, Congrats on getting through rads! You hit on one of the best reasons we all stay here in the lumpy lounge - we're not alone! I suspect it doesn't matter a bit when you take your Tamoxifen. I haven't heard of anyone having issues with it. Some ladies have sleep issues with AIs (I don't). Take it whenever you are likely to remember it.
HUGS!
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Congratulations Mellang u go girl - time to heal 👍❤️❤️❤️❤️
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