Lumpectomy Lounge....let's talk!
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Thank you everyone for the feed back the more feed back and the better for me at this time and I really appreciate all your input.
DaraB I have a question did you get Chemo or no....... it said you are down below but above you said your Onco came back 20 and that your were not going to get Chemo but I think you would if it was 20 mine is a 19 and as you can see the percent was about even either way as far as treatment for me. Can you tell what is Prosigna and a MamoPrint and I did look at your info but are you prescribed hormone therapy. This is not easy to deal with and I would love to go down this road knowing I made the right decisions. Lots of love and laughs always to all!!
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sfar - are you doing Herceptin too?
Whoever was doing the FitBit connecting - please connect with me too!
I am having such panic/anxiety attacks this weekend - I don't know why! I was so much stronger and determined prior to finding out the latest change in my receptors (now Her2+). Why is this freaking me out so much? It feels much more 'dangerous'? I am freaking about the port decision...and more importantly, especially after reading Poodles post - my stomach. I am super prone to C-diff (have had it twice), I have diverticultis, and a rare 'microscopic lymphotic colitis'. I am terrified the chemo will totally rip up my intestinal lining and make my stomach issues far worse than they already are! And that is some horrible pain to go through - when it is flared up and angry.
Is taking xanax every night a bad thing? I really hope my appointment tomorrow provides me some relief from this anxiety - I hate the tingly in my chest and arms!
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Yes, I get my second infusion tomorrow. What I wasn't very clear about was that after I got my Oncotype back, my MO went through everything and told me the benefit of chemo what, like you said, was very small, about 2% difference so I had made up my mind NOT to do chemo as I thought the benefits didn't warrant the risks. THEN, my MO called me and said the team had looked at my chart and recommended another test, the Prosigna, which has proven very helpful with those who score in the intermediate range for Oncotype. From what I've researched, the Prosigna and MammoPrint are similar in that they both do additional genome testing and can help pinpoint those who are high risk vs low risk for recurrence. I was dumbfounded when my numbers came back high risk. Every test result prior led me to believe I just needed a lx and rads. I have no genetic mutations, but agreed to wait the 10 days to get the new results and am glad I waited. I certainly did not want to do chemo, but it's not as bad as I thought. I've had quite a bit of bc and other cancers in my family, so wanted to make sure I could make my decision with as much info as possible. Ask as many questions as you want, both of us and your MO. I go to every single appointment with a whole list of questions. I knew about almost everything from this site before the drs mentioned it. I believe in being informed, and my MO is all in favor of it so long as I use reputable sites. I stick to these boards and the main search option on BCO, and then American Cancer Society. I can't control a lot, but I can be my own advocate. :-)
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Saedi, I hope you fired that surgeon. I am sorry for your treatment and hope everything moving forward goes well for you. Hugs.
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KD, that is a hard decision - the port. I think I would get a port - one and done, not sticks all the time. But that's me. Unless you're told to not take Xanax, take it! Ask tons of questions tomorrow and make sure to emphasize your tummy issues. It's very important that those things are taken into consideration. Good luck!
HUGS!
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KD, I sent you a pm
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KD...it IS just so scary. Will say that I think having a port made it easier...the Her2Pos gig is a year and it just made sense to me...never had any probs. Just had the port out last month- no worries. PM me if you have any questions. Hugs to you! AND, I took the Xanax as needed and some nights I really needed it! Not knowing a plan, waiting to develop a plan, executing a plan.....whatever - you may need a zanax,, 1/2 of one or a whole one...you will know.
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Thanks DaraB, I have some other questions for you my cancer is Stage 2A I didn't have the right stage listed but I got it right now. But if I do CHEMO I will be doing the same as you are when it comes to CHEMO its......Cytoxan, Taxotere and also Hormone Therapy -Tamoxifen and then my MO said prednisone and some MEDS for the bone I forgot the name but I hear its very painful to deal with. Can you tell me how your doing on the CHEMO and anyone else as well if you like would be great to know. Lots of Love and Laughs Always........Hugs too!!
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Cinnamon, where are you being treated up in Lake County--CTCA, NorthShore Highland Park or Advocate Condell? I'd try to get a second opinion before agreeing to a full ALND. You have a tiny tumor. Grade 2 is “moderate," the most common grade for IDC, and it's strongly hormone-receptor positive. ODX 19 is at the low end of intermediate risk--you need to ask how that Grade 2 was computed. What was the Nottingham Score--which corresponds closely to grade? The Nottingham Score assigns a point value of 1-3 to one of each of three features, with the lowest possible score a 3 and the highest a 9. Mitotic rate is 1 for slowest-dividing (i.e., growing), 2 for moderate, 3 for fastest--slower is better; Tubule formation--more tubules is better--is 1 for lots of tubules, 2 for moderate, 3 for few tubules; and tumor cell differentiation (the main determinant of grade)--1 is well-differentiated, 2 is moderate, 3 is poorly differentiated. These sub-scores are added up and expressed as anywhere from 3/9 to 9/9. 3/9-5/9 is grade 1, 6/9-7/9 is grade 2, 8/9-9/9 is grade 3. The reason you need to ask is that of the three factors, mitotic rate is increasingly being considered as the most prognostic--and perhaps the reason your ODX score is 19 is that your mitotic rate was 2 or 3. It isn't how many nodes you have removed or biopsied that determines “number of positive nodes" nor the need for chemo--it's the number of nodes biopsied and determined to be positive. Not exploring further is like putting blinders on and “seeing no evil.” It’s not a sensible option. Neither is taking out more nodes than necessary to determine spread. They should probably look at the level 1 nodes first--if none of them are positive, they can stop there. It makes no sense to remove all the nodes in your armpit just because they found a single positive sentinel node. (Still think it made little sense to take just one node during the SNLB--if they took 2 to 4 and that one was the only positive one, then there wouldn’t be any need to go in again. They could have avoided having to put you through a second surgery....with its risks and additional expense; but since they’ll now have to, they should do no more than is necessary and prudent to avoid further lymphedema risk).
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KD: Yes, I am doing Herceptin for a year. I have my first infusion (without chemo) on Wednesday. I also will be taking a hormone blocker after I finish radiation. The Her2 part is a little scary. Luckily we have Herceptin. My port has been a non-issue. It went in easily and didn't cause much pain. My veins are tough to access, so I am glad to have it.
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Cinnamon, none of us wanted to have Chemo. But in some cases it is necessary for different reasons. Here in Canada, the government will not allow us to have Herceptin without doing Chemo first. That is definitely a pain, but when my FISH came back with a HER2 positive result, it seemed to be the best choice for me.
As everyone has said, do your research and ask your MO questions to clear up any ambiguities you may have... If you don't like the answers, then get a second opinion.
Reading this site about the different items of my dx have really helped. There were so many different terms thrown at me that it was impossible to understand what was being relayed.
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Dara, Good Luck on your Second Session... My hair is falling like leaves now, so I will go and get it mowed today.
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I haven't been so active in posting here, but everytime I feel low or lonely with this thing, I open to BCO and find support and understanding -- all of you are amazing!
cinnamon 68 i totally identify with what you are going thru - also the lonliness even if i am not theoretically alone - and also people around me just needing and expecting the "old me" who was there listening and comforting them, when actually now i need that attentive ear and comforting. But also because i am in a likewise situation, they found 1 node of the 3 removed to be cancerous and also do not know what to do with me.... actually my oncologist "doesn't believe" in the oncotype (and my particular insurance doesn;t want to cover the expense) but what he does want is for me to do another surgery to get out more nodes - BTW not all, but the next "layer".... and this isn't as a treatment to get rid of what may or not be there - but rather almost as a "test" - if there are G-d forbid more node involvement, then maybe it cwould make more sense to do the chemo....
i really don't know what to do. i hate going thru surgery (i guess no one likes it but i REALLY dont want to have more surgery) and the thought of going thru another surgery and being in risk of the lymphedema just to see if there are more nodes infected seems to me insane - i think i'd rather just do the chemo because the shemo is actual treatment and should BSD kill what is there. but then i read not only the SE but the long-reasching harm chemo can do, and i think i must be crazy to think i should go through it, when they are saying it will only give me a 1% better chance of surviving....
its so frustrating even when the best and well-meaning doctors seem themselves not to have an answer for me...
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thereisnodispair, I had two nodes removed and one had cancer in it. We don't qualify for oncotype testing here if there are any positive nodes, chemotherapy is standard practice. Even though I suspected before my surgery that I would have a positive lymph node, because of something that had shown on a ultrasound, it was still very disappointing and scary to realize I needed chemo, I can tell you that it was not nearly as horrible as I thought it would be. Obviously it was not fun, but it was very doable. There were so many days during those five months where I would think to myself "I can't believe I'm in the middle of chemotherapy, I feel so normal". Of course there were bad days too, but I just want to give you some hope, for most of us it's not nearly as horrible as we think it would be. The chemotherapy boards on BCO are great.
Ladies I am now four months PFC and I got my first haircut yesterday. It was very hard to go for a haircut with my hair is already so much shorter than I like it, but the sides and back were so straggly I couldn't move them down and it looked awful. I'm letting the top grow first and then will grow out the sides and back. Ignore the cut on my nose, it was a white water rafting injury!
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Jill, you look fantastic. White water rafting?? Good for you!!
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Cinnamon and Thereisnodespair, I really feel for you. It's frustrating that there are so many models of practice, and that doctors and insurance play such a vital role in our lives. I've experienced it with other health issues . I'm on medicare with supplemental Blue Shield PPO that allows me to go to any doctor in any group. The minute I was dx, I started asking and everyone told me to go to City of Hope. I truly have not regretted my decision nor the 1 1/4 hr drive to the center. Being one of the largest research facilities for cancer, they tend to push for more cutting edge tx. I know though that not all have that opportunity, but hope you can take the time to get addition opinions.
Educate yourself about your options. New York Times has been doing a whole series on Cancer and my sister sent this latest link about the MammoPrint test (of course you would need your oncotype results first.) I'm listing my link for this site for that info.
I have a huge 3 ring binder that I organized with my appt., questions, test results, and resources. It has been my bible. It's your life and you need to be your own advocate. I find the research also helped keep my mind off things when I was waiting for results.
MammoPrint: http://www.nytimes.com/2016/08/25/science/gene-tes...
http://www.breastcancer.org/symptoms/testing/types/oncotype_dx
http://www.breastcancer.org/research-news/oncotype-score-0-to-10-can-skip-chemo
http://www.breastcancer.org/research-news/mammaprint-can-help-decide-who-can-skip-chemo
http://www.breastcancer.org/research-news/prosigna-test-estimates-recurrence-risk
Lovestofly, you look darling! And your hair color is beautiful! How long after chemo can we color hair? Did your's come in curly? That's what every one says. Did hair continue to grow/fall out after your first infusion? I buzzed mine last week and find that I have "nubs" growing back already in some patches. I'm wondering if those will also stop after additional treatments? I lost the back half of eyebrows over night last night. Such an interesting look, maybe a little Dr. Spock (and not the pediatrician one!)
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yes! We just got back from a week in Quebec, where we went on a half-day white water rafting trip on the rouge River. I've never been before, it was awesome!
I'm in there!
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Jill, You do look fantastic! Isn't it nice to know that your hair is growing??
I wish I could contribute to the chemo/no chemo discussions but I really don't know anything. All I can say is make sure you know why you are being told to have chemo. And don't let them remove more nodes without a good reason.
HUGS!
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B"H
tnx to you all - really it is amazing. sometimes i really have to remind myself that you too are all going through this, you are so willing to put that aside to support and reach out to others! as if you don't have any problems of your own!!!!
yes it is all confusing - you hope the doctors can give you a black & whitye "yes" or "no", but they seem not to know themselves what steps to take....
thank you all for your support! Peggy you are AMAZING - and i am really happy you don't have any chemo experience to share with us - and I hope you never will!!!
lovestofly - wow, rafting.... lately i find myself often dreaming about the adventures in nature i would love to experience.... looking forward to that day!
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Thanks, ThereIsNoDespair. I hope the same. However, if it ever comes to needing chemo, I have my daughter-in-law to look to for coping with it. With grace, humor, determination, and positive thinking.
HUGS!
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KD, one of the things the GI doc brought up is that my condition may actually be microscopic colitis. Of course, the only way to know is with a colonoscopy, so they can get biopsies. He is scheduling out as far as late Oct, but I'm hoping to have my hyst in mid-Oct so I know I won't want anyone poking around down there with a hose a week or two later. I made the appt for mid-Nov. In the meantime, they are going to do a stool study, hopefully get that result by Friday. He put me on some medication that slows motility, so hopefully that will work. I've been using Immodium, but I get such bad cramping when I use it that I'd just rather go ahead and have the 6 diarrhea stools that it's trying to prevent.
As for the port...I had a port put in, even though I was only having 4 rounds of chemo. My MO highly recommended that I not try to use the veins in my one good arm (can't use the zombie side due to SNB). I tossed it over for a week until I decided she was right. And I'm so glad I did. The port was uncomfortable initially--not bad enough for a narcotic, but just kinda sticking me off and on. Of course, it didn't help that my chemo started the day after I got the port, so it nnever got a chance to really heal before we started using it. It was a lot better within a week, but I always knew it was there. I didn't love the look of it, but I did love the fact that they didn''t have to go digging around in my left arm and hand (or god forbid, my feet!) looking for a vein. I had a few trips to the ER with dehydration during chemo and I was really, REALLY glad I had that port.
As far as the Xanax...do it. If you ever needed it, it's probably now. I have a long history of bipolar depression, PTSD, and anxiety, mostly controlled by a medication cocktail. This BC business really upset my apple-cart. I went from rarely needing to take anything extra, to taking Xanax at least once a day AND a sleeping pill every night (sometimes two!). My doctor added a med in March, which has helped a lot, and I was able to reduce the Xanax to once a week or less. I only just stopped taking the sleeping pill last week (and I've been going at this for over a year!) I have had no problems with becoming habituated, nor with stopping the meds.
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Hahahaha "government-paid Brazilian." Elizabeth that's hilarious!
Congrats Sandy and Peggy for making the VIP list!
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Jill, you look awesome--and I’m not surprised that you went white-water rafting. The cut will heal--but the memories of the fun are forever.
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thanks! We also did Treetop trekking and a zip lining, I'm pretty much a wimp but I've been trying to push myself more...oven before bc but definitely after. (I didn't dive off the cliff though!
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I just can't keep up here lately! But I wanted to say:
Dara, you look really cute and so pretty in the hat! I like hats the best. I've just about stopped wearing the beanies.
Sandy and Peggy, big congrats for being named VIPS! You both deserve it to the utmost!
Jill, thanks for stopping by - good to "see" you!
Hello to the newbies. It gets easier as you go along. But big {{HUGS}} whenever you need them!
For those asking about chemo, I just finished the TC x 4 chemo. Although it was not fun, it was okay. I kept up with my moderate weight workouts all through it, walked every day, and I hiked every week although not as far as I normally go. I am definitely slower up the hills, but I know I'll be back to normal in a few months. The no hair thing sucks but it won't be forever. Fatigue is a definite side effect but if you are able to let yourself rest when necessary, it's not terrible. I eat a super healthy diet and exercise every day, and I know that's one reason I had so few side effects. I never took any meds besides what they put in the IV drip on chemo days. My appetite was very poor after the first treatment, but picked up by week 2, and I didn't have that problem again.
Sorry I don't have time for more comments. Hang in there, everyone!!
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Wow, lovestofly! I am impressed with your energy. I would love to go white-water rafting again, but sadly, DH would not be able to tolerate the activity. He can't paddle and would be totally embarrassed to sit in the raft doing nothing. We used to go hike up to see waterfalls (north Georgia has over 100), but now we restrict our outdoor activity to camping in our trailer and going on a hayride (and sometimes that is too much for him.) In the fall and spring we have a campfire--just too hot during the summer--and he likes that.
Speaking of camping, thanks to someone cancelling their campsite this morning I managed to snag the very last site at our wonderful campground in the North Georgia mountains! We need to get away--DH is so depressed, it's all I can do to get him to leave the house. He will be forced to walk the dog and take the trash out at least once a day. We'll have a shady site, so I will try to get him to sit outside in his recliner-chair so he can greet people as they walk by (campers are very friendly folks.) We leave Thurs after yet another doctor visit (foo!)
Ugh, I had to take the doggy to the vet today. he has almost chewed his tail off and I only exaggerate a little. He is utterly miserable and stopped eating and playing. Pup has licked his tummy to the point that it is bright pink and is scratching his back like crazy. He has torn his tail up badly. No fleas, at least. The vet thinks probably just allergies (he's a Bichon and they are noted to have a lot of food and environmental allergies.) The vet gave him a steroid shot, some antibiotics (it's badly infected), and some medicated pads that I'm supposed to soak his tail in 2-3 times a day. Hopefully, he'll be better in a couple days. it cost me almost $300, but what are ya gonna do? He's like a child--you can't just not take care of these things.
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mlp i'm sorry your husband, and dog, are having such a hard time
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Poodles, yeah for snagging that campsite! You certainly do need to get away. Far too much sh*t going on. And DH will enjoy himself. Poor Pup! #1 kitty has licked a lot of her fur off her belly and several inches of her sides. An ongoing problem for several years. They did the steroid thing several times and she turned up diabetic. We went thru pills then shots and then she wasn't diabetic anymore. She's still happily licking away but not as much. I think her fur is starting to comeback. Maybe she was stressed out because I was? I'm sorry that Pup's tail is such a mess. Ugh. Hopefully all the meds will work. Will he go on regular Benadryl? Any clue what he might be allergic to? We do love our furbabies, don't we?
Moondust, thank you!
HUGS!
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Just got home from meeting with the Medical Oncologist. I adore the cancer center so far - not sure how/what I feel about the MO. Dare I say he seems super super old? lol. As long as he is trendy on his treatment, I don't care about his age I guess. So my 1.5 mass was Her2-, but the 1.6 mass was Her2+...go figure. But irregardless, they treat me as triple positive anyway. They found it out via the IHC test (ImmunoHistoChemistry). Do I add something in my signature dx with this? I see several have FISH noted...but I was 3+ on my IHC, so no need to do the FISH test they said. They also said the Her2+ is only in about 20% of breast cancers. great.
I am looking at about 5 months of chemo - if I am understanding the treatment correctly. Happy Hammer, Elizabeth, and any other Her2+ or Triple Plus folks on this thread - have you done these?
- blood test, EKG, and port within the next week or so. Once blood and EKG is clear and port is ready, chemo begins.
- Chemo treatment, Adriomicine & Cytoxin (AC) - once every 2 weeks for 4 sessions.
- Chemo treatment, Taxol - once a week for 12 weeks
- Perjeta & Herceptin start with the Taxol - but once every 3 weeks. Perjeta is only 4 sessions, Herceptin is for a year.
- So basically, chemo for 5 months!
- Once chemo is all done - then radiation and hormone treatment (Tamoxifen)
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KD, as long as you feel comfortable with your MO and trust him, I think that's more important than age. Could you talk with him? Did he really listen to you and answer your questions? Did he take time with you?
Looks like you will be very busy for awhile. But if it kills the BC, it should be worth it!!!
HUGS!
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