Lumpectomy Lounge....let's talk!
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ILSharon, those damned intermediate Oncotype scores are awful. You might consider further testing, see what the tumor board at your center thinks you should do. Good luck. And whatever you decide to do, don't look back! You'll have made the decision with the best information and figured out what is right for you! Good luck.
BagSharon, welcome! Lurk away. This is the best forum on BCO, IMHO. I love being here. I'm way beyond active treatment except my Arimidex but this is home. These gals have held my hands in the worst of times (like when I had to put DH in hospice care) and the best of times (moving to be near my DS). I owe so much to them that whatever I can give back, I'm glad to do. Thank you for chiming in!
HUGS!
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ILSharon, it could be oncotype has you as PR negative because you were only weakly positive on pathology. I would ask for further testing if possible like Dara suggested. Bagsharon, Welcome! Glad to have you join in.
Poodles!!! Woot woot!! Congratulations on getting accepted to NOLA.
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Poodles, YES!! I'm so happy for you! Will you be able to do it this year or have to wait until next year? About time you had some positive news!
HUGS!
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Hi Sunrise... My onco score is 24 and my new MO, the old one wanted chemo.. but she said at my age (67) the risk was higher then the benefits, so No Chemo, but I start rads Nov. 2.. and you can see my signature.. I was in the middle for most of it, so no regrets, just want to get this over...
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Skipping a few pages. Leslie I did FEC-d....it was so much more tolerable than an I expected!!!
Hugs all, Jill!
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Happy to hear that LovesToFly!! I hope I do well with it too.
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Peggy, I would like to get it done before Jan 1, since I have met my deductible and out-of-pocket expenses. I may not have time, though. I don't know what their schedules are like. I know for sure that I can't have surgery until I'm 6-8 weeks post-op this hysterectomy, around Nov 30-Dec 14. And might I say, recovery is going swimmingly--I'm going to try to go back to working from home on Monday!) I know that going to NOLA will require about a 10-14 day stay--4-5 days in the hospital, plus7-8 days at a local hotel until I see them for my post-op. So, going in December could mean skipping Christmas at home. Not that my kids would really care--My oldest DS30 considers himself to be a nihilist and therefore, does not celebrate Christian holidays (but he'll sure cash his Christmas check!); my DD23 is over the top in love, so she can't see anything but her boyfriend (insert eye roll); and Christian, bless his heart, doesn't care one bit about presents and stuff (he's my severely mentally handicapped/autistic 20yo.) If it looks like Christmas is going to be a wash, we'll just make sure to celebrate Thanksgiving well and schedule Christmas for an early Dec weekend.
And speaking of Thanksgiving, guess what I did?! I convinced my mother to let me buy her a round-trip ticket to Atlanta to spend 5 days with us Thanksgiving week, as our Christmas present to her. She mentioned the other day on FB that she never gets to see my kids. We live 450 miles away and my kids are both working new jobs--they simply can't afford to take more than a day or two off. And we can't manage Christian on a trip more than 2 hours in length (he wears diapers. Did I mention he is 6'3"?) The last time I tried to fly with him, he spent the last 90 min of our trip taking his seatbelt off, standing up and climbing over me to get to the aisle. I had to literally lay on him to keep him in his seat for landing. Eep! No more flying for him!
Anyway, I told her that I really wanted her to come up here to celebrate Thanksgiving with us, so she could see all the kids on their time. We always go to a botanical gardens about 90 miles away on the Tuesday night before Thanksgiving. They put up about 9 million lights and music, and you ride through the gardens in their Jolly Trolley (an F250 pulling small "train cars.") This is Christian's Christmas present, since he DOES love lights and music--his eyes nearly pop out of his head! My older kids have managed to attend nearly every year for the last 10 years and Mother has gone with us twice. We always have a blast! At first Mother turned it down flat, but after I pleaded with her on behalf of my kids, and reminded her that her 10yr old van is not up to the trip, she caved.
I know that having Mother stay with us for 5 days is going to require a LOT of patience, and some teeth-gritting, on my part. I love her, but she can really push my buttons and she never stops talking, ever. But I will just have to make it work, for all our sakes, so we can have a nice holiday. She's 82 and her health is getting a little worse every year. Who knows how many years she has left? I better spend as much time with her as I can.
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Poodles, I thought that this year was your preferred time because you have met your deductibles. I'm glad your mom is coming to visit for Thanksgiving. That's good. She'll enjoy being around all of you. And if you didn't kill her over the creepy dolls, you'll manage 5 or 6 days of biting your tongue (extra wine on hand might be advised). I can't begin to imagine how awful it was flying with Christian. I'm horrified. My DH was 6'3" and over 200 lbs most of the time. At least he was manageable. Obviously Christian wasn't on that flight. Definitely keep Christian off planes. The botanical gardens light show sounds fabulous. I'm envious. You have things planned out very well. I hope NOLA cooperates and you get in in December. And so very glad you are healing good!! Whew!!!
HUGS!
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ILSunrise Hi! I was a 24 and no chemo for me. I went with my BSO (breast surgeon oncologist) recommendation. I remember him saying at the time that new studies would be coming out to support using AI instead of chemo for my particular cancer type. Best of luck. I know this is a hard time. I was thankful that my Doc was so definitive on his recommendation. He did say however, If I wanted to do chemo he'd set me up with a MO.
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Congrats poodles!! DIEP at NOLA!! Whoot!
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Poodles, I'm so glad the reconstruction is going ahead, it's time there was good news for you!
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Thanks everyone for your suggestions on possible further tests or cancer board recommendations.
Molly50, my PR+ on Path was 44% and ER+ was 49+, so once again kind of in the middle.
Nash54, did you have brachytherapy? I was hoping to do that, but turned I wasn't a candidate based on my path report and clearance.
Well, I'm just not going to think about Onco score any more this weekend. DH and Indecided to get away and have some fun. We're heading to Herman, MO a lovely little German community with several wineries. Its their last weekend to celebrate Oktoberfest, so there will be lots of live music which I love
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ILSunrise, I actually got my Oncotype score before my surgery so initially, chemo was NOT on the table even with middle range ER/PR+ percentages. It was the pathology afterwards that tipped the scale. I went from a clinical stage I to a surgical stage II, and the grade changed from 1 to 2. Plus there was LVI and isolated cells found in one node. I think if you removed even one of those tiny pebbles from the scale, the decision would have gone the other way. In the end I just had to trust my MO.
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ILSunrise....I did have brachytherapy. Glad to have rads done in a week. Have fun at Octoberfest! I love a good beer and some bratwurst and sauerkraut!
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LESLIE -- I also have the triple positive BC... Your proposed treatment is a bit different from mine, but essentially the same. The Chemo and the Herceptin will take a year. For this reason, I suggest you have a Power Port installed. It will make doing blood tests and the chemo infusions much easier. Then when you are finished with all of this it is removed.
http://www.bardaccess.com/products/ports/powerportHere is the link to the Chemo Therapy Drugs and their informations...
http://www.breastcancer.org/treatment/chemotherapyHere is a link to the Targeted Therapy Drugs
http://www.breastcancer.org/treatment/targeted_the...Here is the link to the Hormornal Therapy Drugs
http://www.breastcancer.org/treatment/hormonal
These are all the subjects you will be discussing with your Medical Oncologist (MO) Read and learn about this part of your treatment first. The radiation will not happen until the Chemo portion is done. but there is also a section on the Radiation Treatment too.
Most of ALL breath..... we all know that punch in the gut feeling and then being overwhelmed with terms and words we have no clue what they mean.
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ILSunrise,
If you need anything, you can private message me. I can share my experience of being in the middle of Illinois with you. Have fun on your trip to the wineries! It is my husband and my 22nd anniversary tomorrow and not sure what we are doing. Maybe postpone celebrating for a couple of weeks. Finishing up radiation boosts next Wednesday, Nov 2nd and would like to move on from there. November is for having fun and healing from rads. It has been a tough year and I plan to celebrate for 28 days in a row. Not big celebrations, but small incremental celebrations, like figuring out what kind of creamer I can use in my decaf coffee. No dairy or soy for me and I really miss my flavored Americano's from a boutique coffee place. December is dexa scan, tamoxifen vs. AI decision, my birthday and Christmas. Some people just start everything in their treatment at the same time, but I have to take one tx at a time and then a small mental health break.
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Sunrise, there are so many tiny variations in each of our diagnoses, and my MO really had to drill down and weigh each and very element. My ER was 99, my PR 20, and Her2 originally was neutral -- my FSH finally declared the Her2 was negative. My tumor was primarily IDC but they also found DCIS, grade 3 in the path. So you can see that there are so many moving parts, and everyone really is different. Just gather as much information as you can and then confidently make your best decision. As Peggy said, don't look back. We are fortunate that we are in a time when there are so many studies, rials, and new knowledge being discovered. In the future, who knows what treatment will look like.
Poodles, congrats on the approval! It would be so great if you could start out the new year all done! Will keep fingers crossed that the schedule works out.
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Well, two Ontario gals finally managed to get together for coffee. (Thanks again, Peggy, for sending us the Tim Horton's gift card left over from your Michigan days!) Great meeting you, Elizabeth!
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Okay, I have had the hysteroscopy, which showed an abnormally thickened endometrium and a polyp, which was removed. Biopsies done, and now a two week wait for the path results. This could be cancer, or atypical hyperplasia which is high risk to become cancerous, or simple hyperplasia which is okay, I think. I need to process this more.
So this is either a new cancer, a high risk condition for a new cancer later, or nothing to worry about now the polyp has gone. And I am slowly losing the ability to cope with it all, I cannot believe we are here again.
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Grazy and Elizabeth, So glad you finally got together. Glad the Timmie's card helped. You both are so pretty.
Dizzy, Ugh! Hoping the path report shows it is all nothing! Try to stay sane with all the waiting.
HUGS!
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I don't know about this but last year I had a cervical smear came back that atypical cells contained, they said theta meant cells in further I had a colposcopy which showed endometriosis but they needed to check in further I had a hysterscopy they showed pre cancerous cells I had a let'z to burn them off smear 6 months later was fine now back to normal smears.i don't know could it b same for you? I had irregular bleeding for ages
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They are welcome to remove every female reproductive organ they can find, I don't need any of them and they're causing nothing but grief. I think they would do a laparoscopic hysterectomy in the middle and worst scenarios. The trouble is with the Tamoxifen, which hasn't caused this but could cause it later, if it has happened once, even if it is benign, you're a high risk for it happening again. But Tamoxifen is the only drug licenced in the UK for DCIS, so I'm stuck with it.
It would be interesting coordinating two lots of cancer treatments, the multidisciplinary team meetings would need a bigger room.
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Dizzybee - You've probably already heard of the link between Tamoxifen and the thickening of the endometrium. I'm not sure how old you are, but find out from your doc if they plan to keep you on Tamoxifen or if the doc wants to make changes. Good luck!
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Yes, I know that's one of the problems with Tamoxifen. The bleeding happened on my third day of it, which is why this can't have caused it, my worry is that it will cause it again in future even if this does turn out to be okay. I'm 56, so well past the menopause, but AIs are not licenced for DCIS only invasive cancers whatever age you are. The consultant said that if it has happened once, I'll be high risk for a recurrence if I continue with Tamoxifen, normally they would treat this with high dose progesterone, except when you have breast cancer.
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Dizzybee, two of my sisters had hysterectomies a couple of years ago. One had DCIS and was pre-menopausal at the time, so they took the uterus and put her on Arimidex. The pathology unexpectedly came back positive for uterine cancer, so it was a blessing that she got all that out. The other sister had a hysterectomy because of heavy periods. She has always had bad endometriosis. Her pathology also came back unexpectedly positive for uterine cancer, so it was also a blessing that she got all of that out. My grandmother at age 47 also had uterine cancer. My MO decided that with my gene mutations, plus family history, it would be a good idea for me to also have a hysterectomy and take the ovaries. I'm only a week post-op, so it remains to be seen what the pathology will be.
One good thing about early uterine cancer it is just about 100% curable with a hyst. my granmother lived to be 76, even after a bout with BC at 58 and TWO bouts of colon cancer !
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Poodles, I thought that uterine cancer was one of those random things, I didn't realise that there can be a family history of it. I thought it was only breast and ovarian cancer that had a genetic link.Your family is so lucky, both your sisters having hysterectomies for other reasons before it became advanced.
I'm a lot calmer now, I was just so sure that there would be nothing, and then we were having conversations about staging and grading and which cancer would have to be treated first, I still have no date for rads to start. The BC is obviously a significant complication. Anyway, panic over for the moment.
But I'm definitely thinking I'd rather have a hysterectomy than keep doing this, the biopsy and polyp removal wasn't great, I didn't realise the uterus is so well supplied with nerve endings. Was yours via laparoscopy?
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Grazy and Elizabeth, what a beautiful picture of you two lovely ladies! Dizzybee, I hope your pathology is negative. I would consider a hyst in your shoes as well.
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Grazy and Elizabeth - what a great picture! Isn't it exciting to meet another BCO sister? I sure wish we were all closer...such a terrific group of ladies.
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Yes, Dizzybee, my hyst was laparoscopic. It really hasn't been bad. Well, the first 24 hours were horrible, but only because I couldn't stop vomiting. Apparently, Morphine doesn't agree with me. I took some Percocet for a couple days, and then Tylenol about once a day for a few more days. I'm hoping my doctor will agree to let me go back to work on Tuesday so I don't have to use up all my sick leave.
I'm a week post-op and today I spent 5 hours cleaning my son's bedroom and bathroom, in anticipation of my mother coming for Thanksgiving.DS has gone to NOLA for the weekend. And let me tell you, it was nasty-wasty. I literally could not walk from one side of the bedroom to the other without stepping on about a half-foot of clothes, books, change, and stuff. About 1/3 of it was dirty clothes and the rest was just balled up clean clothes. I put the clean stuff in containers in the closet and dusted everything. Now to vacuum (I'm not allowed to do that yet.) Boy, is he gonna be pissed when he gets back, LOL. I don't even care. I'm just about over him taking over my house and making a mess. His bathroom was disgusting--I've asked him 3 times in the last 3 weeks to clean it up and he wouldn't do it. (Did I mention that he is 30!) I am ready for him to GO!! I'm secretly hoping he'll get mad enough to move OUT!
Anybody want a lazy, slovenly, surly 30 year old gamer/welder?
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Poodles, if you're charging DS rent, up it! Then use the extra for housekeeping help to clean his mess. Make sure to make it a sizable amount
Good luck getting him out! Glad you're feeling better - whew!HUGS!
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