Lumpectomy Lounge....let's talk!
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oooo caligirl sorry to hear you are having so much problems. Ouch sounds horrible. My aunty turned me on to nursing pads. I slather the ointment on and cover with the pad. It does rub off onto the pad but i keep putting it on and i feel that it has helped a bit. The underarm is the hardest tho, i even tried a small bit of saran wrap - it was ok at nite......hang in there - thinking of you. Today is my last treatment. Very happy about that.
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Thanks. I think I got it. Chemo starts tomorrow. Six weeks of taxol and herceptin weekly and then just herception, every 3 weeks. Feeling more frustrated than anxious I think. I hadn't planned on this, even after the radiation but the final path report showed HER2-positive. I'm having trouble not getting too far ahead of myself, i.e., what activities do I need to give up now, wait on etc. I'm so glad I found this lounge. I was totally scaring myself in other rooms.
My cancer journey is starting as my best friend's ends. She went into hospice the week I got my positive biopsy report and died Monday. Hers was stage 4 when diagnosed 5 plus years ago but still hard for me. Her daughters insisted I take all her wigs, scarves and button down tops. The scarves did make me remember some wonderful fun times together however.
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Taco1946, You did get it. I'm so sorry about your best friend. That's hard to cope with when you're starting your own BC journey. Scares the sh*t out of you. As you wear the scarves and wigs your friend used, I hope they give you comfort and know that she is watching over you.
We try to not scare you here. We give information on our experiences. As you can tell, everyone's experience is is different. One reason that many stay in our lounge even when they have had mastectomies or chemo or both, is that we are caring. I hope you make wonderful friends here like I have. They couldn't be more supportive.
HUGS!
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Taco, I'm sorry for the loss of your best friend. I'm glad that you can take some comfort in wearing some of her scarves and her wigs. I'm sure she would be pleased to see you happy with them.
Natsera, Sandy gave you a lot of great information. I just wanted to add my 2-cents, as one who started with lumpectomy and ended with bilateral mastectomies.
Sometimes this breast cancer journey takes off on an undisclosed rabbit trail. Mine started off in Jul 2015 with a simple 1.9cm IDC. Due to an inordinately high number of breast cancers in my family, I had genetic testing prior to my lumpectomy. When it came back all BRCA negative we rejoiced and proceeded with the lumpectomy. Darn it! Didn't get clean margins, so back I went for re-excision (basically, an additionally lumpectomy.) Imagine my horror, and that of my BS, when later the genetic tests came back positive for TWO rare mutations which cause breast cancer and other cancers! By that time, the results of my tumor had changed from a relatively garden variety ER+PR+ Grade 2 to ER+PR- Grade 3, a more aggressive cancer. No time to waste! Forget about radiation, on to chemotherapy!
After all the chemo was completed my MO strongly suggested that I have bilateral mastectomies, due to the gene mutations. STRONGLY suggested. Otherwise I would have never gone down that road. The one and only positive thing was that by having the BMX, I avoided rads. Foo! I'd rather have rads a million times than what I went through. I won't go into the details, but I had a VERY long, VERY rough recovery from the BMX. And then I had to have a total hyst in Oct 2016 because I have two sisters, a grandmother, and an aunt who had uterine cancer (and 3 of them also had BC!)
Anyway, all that has taken about 19 months out of my life. My hair fell out. My hair grew back. My breasts were taken. I wear fancy silicone prosthetics in their place (awaiting recon.) I had already gone through menopause so the hysterectomy was a piece of cake. At this point, I feel like I'm getting my life back, although I still have sequelae from the chemo (don't you love that word, sequelae?) My concentration is spotty and my short term memory is indeed very short (also called chemo brain.) I have had diarrhea for 16 months (chemo--the gift that keeps on giving!) But, I have a large family, a church, and a job that I love. So, though many things in my life have changed, "life has found a way!" (for you Jurassic Park geeks, LOL)
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Congratulations Miko!! You've made it to the Cheerleading Section...
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Taco, Natsera, glad that you both have found this board, sorry about the circumstances, but under these circumstances it is a wonderful community of breast cancer patients and survivors who each has an interesting journey and graciously share their experiences - all have been very helpful to me.
Although I am not at the very beginning of my BC journey, I was able to avoid chemo (due to having a very low Oncotype DX score of 5) but did the rads following my lumpectomy, which I finished in late January.
I have not been posting much because I have been extremely fatigued, hopefully, this will improve in time - trying to rest a lot (back to half days at work) and maintain a high calorie high protein diet, like my RO discharge papers instructed me to do.
From what I have read, even though my Oncotype DX score was low recurrence, recurrence of my BC has already become a fear for me. I will be due for my first mammogram in my Left Breast (the one with cancer) and I already feel anxious. My right breast won't be due until Oct (every year still for that one unless something is found).
I am due to meet with the genetic counselor next week, have a mound of paperwork to complete for her visit - a lot of relatives on both sides of my family tree have had different types of cancers - who knows what this is going to reveal.
Celand
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Miko,Congratulations on finishing rads! Wishing you speedy healing. I know I was pretty tired right after finishing, but after a week to 10 days the fatigue subsided andI really started to feel like my old self. You've crossed an important threshold...YEA!!!
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YAY Miko, you made it! So happy for you!
Caligirl, I'm so sorry you're in pain. Hope you get some relief from the pain soon.
Taco, welcome. You found the right place. So sorry for the loss of your friend.
Natsera, welcome too. Glad you found us. Mine started out DCIS. After LX, the tissue showed a small area of IDC. Since I didn't get clean margins and had to have a re-excision, I decided to have nodes checked. I did not have to have chemo but did have radiation followed by Tamoxifen. I found the hardest and most stressful part was all the waiting while you're figuring out your plan. Hang in there we're here to help.
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Caligirl, I sent you a pm. Miko, congratulations! Taco, I am so very sorry for your loss of your friend. It's very sweet of her daughters to give you her scarves etc. Nastera, welcome. This is a wonderful thread and safe haven for many of us.
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yahoo I am finished tyty IHG, tbalding,Molly, Katzpjays, i got a "graduation certificate" that says congratulations on finishing your radiation therapy with dignity, grace and bravery the staff at cancer center of hawaii 👍 The techs were wonderful - they made a scary thing very doable. Although, I must admit my heart was pounding during each and every session. Tyty my friends for all your support and wisdom and helping me through this. Whew, DONE 🤗 Gonna celebrate by taking a nap LOL
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Congratulations, Miko! Glad you're done with rads!!
HUGS!
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tyty Peg, thank you for being there for me from the very beginning. Your wisdom was a great source of comfort and the very first voice I heard when I was at my most vulnerable, lonely and scared. I cannot thank you enough. After all is said and done, my diagnosis was the worse part. The subsequent biopsy, dye for my node surgery ( that was sore), wire placement ( well that was sore too) the lumpectomy and radiation was all doable and looking forward to moving on. Trying to deal with femara and slight side effects. Thanks so much again
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Miko, glad I could help. We all have been in that awful place when we were first diagnosed. If I was able to make that time a bit less scary, then I've done what I hoped to do. It is all doable. Not fun. But we all manage. Hope you do well on femara.
HUGS!
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tyty Peg and to all other great friends on the board 👏🏻👏🏻👏🏻
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Thanks, ChiSandy! It is SO reassuring to be able to ask questions right now, because I don't get in to see the surgeon until Wednesday, and the waiting is awful!
Another question: If it's just a lumpectomy and they don't have to go into the armpit to find the sentinel node (new concept for me), do I still have to be careful of that arm? I.e. not having blood pressure or injections done there? I have a continuous glucose monitor because I have diabetes, and I often put it into that arm (it's a hair-thin needle and a transmitter that stays there for a week), and will I have to stop using that arm?
After surgery, will I have to limit use of the arm? I'm right-handed, and the cancer is on the right side!
I'm also trying to find out what it's going to cost -- seems like I will have to pay as much as $4,000 out of pocket, and then $50 a month for estrogen suppressors. :-(
Are there any special considerations for a person with Type 1 diabetes?
I know the estrogen inhibitors are bad for the bones, but does radiation add to that? And if so, can you take a bone-preserving drug along with the estrogen inhibitor?
I'm probably going to have still MORE questions, and I'm extremely grateful for the answers that you all are so readily and generously giving me!
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Miko....congrats for finishing and being able to move on. Yay!
Taco...so sorry for the loss of your friend. Sweet of her family to share these personal things with you.
Molly... Thank you again!
Trish...thx ...I got some Percocet for the pain today and started my boosts.
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Pontiac Peggy, I will go back into settings to see if I can make my info appear. I was unaware that it didn't. But for quick information: mine is about 6 cm below the nipple at 6:00. I live in Reno, Nevada, and it would be great to have someone here. I have no idea about the lymph nodes or the HER2 status, but should find that out when they do surgery. I see the surgeon on Feb. 8, and it's HARD to wait, but one day at a time. I do know the tumor is small, about 7 mm, and the tests that I DID get back point to a mildly invasive tumor, but it hasn't gotten very far. As mustlovepoodles said, you can't always know what's going to happen, but I'm doing my best to be optimistic, and will deal with whatever happens. But don't imagine I'm blase or unworried -- it's just that it's out of my control, and there is no choice!
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Hi Natsera: did you have your lumpy? I thought through this whole journey the diagnosis and the waiting (always waiting) was indeed the hardest. Hang in there, the gals on this board are very comforting and have great insite and wisdom. Keep up the positive attitude, you can do it.
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So I thought I was going in for Taxol#11 yesterday, but apparently I don't know how to count...as it was #12 and I'm officially done with Taxol now! Hair started with the fuzz regrowth about a week ago, nails are still suspicious looking, eyebrows still gone, eyelashes started growing back a week or so ago, neuropathy is still slight in fingers/toes, gut/diarrhea issues continue, but overall I got through 5 months of chemo (first was AC for 2 months).
Now just continue Herceptin every three weeks through November 2017, get my rad tattoos on 2/21 & expect to start rads the following week. Have that daily for 6 weeks...and truly dreading it. Not sure why as I know it will be easy (relatively speaking) than the chemo. In the midst of switching to a new onc Dr (#3), so not sure when I start hormonal treatment.
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Hi KD: i just finished rads yesterday - i was scheduled for 33 treatments but halfway through it was changed to 21. I started putting on miaderm L alternating with aloe gel weeks before i started rads and continued with both constantly during treatment. Then i started my boosts and switched to aloe only. Now that i am done i am using lindi skin roll ( it is great out of the refrigerator) it is very wet so i had to use something else for work, so i am trying radia gel sheets. It is pretty good and drier. I will be using the radia gel during the day and miaderm L at nite since i have breast and muscle pain. My cancer was just behind my nipple so with the boosts which were directed straight at the nipple, it is now very very dark and a liitle burnt and sore. But it is doable, hang in there. I didn't have chemo but many ladies on this board have had both and said that radiation was easier
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Congrats, Miko !!!
Natsera --- Yes, it the answer to your question. When they fool with the Lymph system, you could get Lymphedema. So you need to take the precautions on the side where they were taken. This is the link to the BCOrg pages on it. http://www.breastcancer.org/treatment/lymphedema
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tyty Elizabeth I am soooo happy 👏🏻👏🏻👏🏻
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Hi, Miko. No, I'm seeing the surgeon for the first time on Feb 8. I don't even know what she's going to do to prepare for surgery.
And yes, the waiting is driving me crazy. I'm on an emotional roller coaster -- one day I'll feel fine and the next day I'll feel irritable and down in the dumps. I have no motivation to do anything and while I AM taking care of my animals, it's with difficulty.
So, I'm slogging through and am glad to have found this site!
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Hi Natsera: hang in there, it is a waiting game you wait for surgery, you wait for results of biopsy, you wait to see the oncologist and wait for radiation or chemo to start, you wait you wait and wait somemore. Stay on the board while doing this , it will be a productive time for you. You will pick up great hints, and excellent advise. Read up on treatment and tests and etc. so that you can make good decisions. Pontiac Peg recommended to me Dr Love's breast book - that was excellent advise as it answered alot of questions I had and helped me to ask the board and my dr /surgeon "intelligent " questions.
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tyty KB870 I am more than burnt toast but glad it's over. This radia gel sheet is really good not as good as lindi skin rolls but also not as messy
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Natsera, while you can’t use your right arm for needle sticks (with a compromised lymph system, there’s a possibility of infection causing cellulitis) or blood pressure cuffs, you can still use it for everything else—so long as you don’t lift anything heavier than a gallon of milk (8 lbs.) with it. You can exercise with it (but no pushups or pullups) so long as you wear compression and work up to it slowly. And you should keep it out of the water if you’re going to use a hot tub. Make sure you get measured for a compression sleeve & gauntlet, and wear it for all flights of 4 hrs. or longer (and while gardening, with good gloves).
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You probably won't be able to get a handle on cost until you have a more definite treatment plan. Check with your insurance about co-pays and deductibles. I know my friend was able to get a some financial assistance from a foundation when her co-pays got huge. She found about it from her oncologist. I'm sorry I never got the name of the Foundation but know it really made a difference for her. Maybe you can google it, i.e., foundations helping cancer patients. I know if wasn't state specific. I seem to be remembering it was a foundation in a southern state - Georgia maybe - which paid here in AZ.
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Congrats Miko! I am at 23 of 33 treatments and can not wait to be done. Just started with slight skin issues the end of last week that now is unbearable at times! I have been using my creams religiously as you girls have all suggested. The most concerning thing is the fatigue. I am not a person that takes naps but I have been needing them lately. I get up for work at 4:30 am, go to radiation tx at 3:15 pm, then home to figure out dinner and I am done! In bed at 8 (sometimes earlier) then do it all again. My emotions are all over the place and the "lightening" pains are ridiculous! I know there is a light at the end of the tunnel, I just need to make it through the next 2 weeks. I appreciate all of you guys for your encouraging words and advice you give to everyone, it helps!
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hi mellang: my treatment and schedule mirrors yours except i am most days exhausted by the time i get home. I usually skip dinner and go straight to bed by 6:30. Sometimes my fatigue lingers till the next morning but I am thankful that my treatments are in the afternoon and can continue to work through it all. Hang in there, keep with the creams and gels it can only help. Keep thinking positive because it will be done soon and you will be able to breathe a sigh of relief. Fatigue is not a figment of the imagination it is real. Keep strong, waiting for you at the finish line
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KDTheater, congrats on finishing your chemo journey! Treat yourself to something special to celebrate.
Mellang, hang in there, you're almost there. My fatigue didn't set in until after rads were done. Sending you positive energy!
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