MIDDLE-AGED WOMEN 40-60ish
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I don't know how it happened, but somehow I'm about 7 pages behind. Way too many to read through, so please know that I hope everyone undergoing tests this week gets good results, and if you got good results in the last two weeks, I'm celebrating with you!
Tamox and/or Aromasin - I did 3.5 of tamox and 1.5 of Aromasin. Can say I miss them at all, but I was shocked when the 5 yrs were up. I know there are some women who have horrible side effects, but I think a good amount of us ... me included ... have milder issues and can deal with them, sometimes creatively! (Like the fact that I had to start going to bed earlier to compensate for the times I'd be up in the night with sweats.)
Hugs to you all.
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marlegal: Thanks for sharing your experience on Tamoxifen and Aromasin. I started Tamoxifen 5 weeks ago, and so far, so good. Except for the %$@#*! hot flashes.
But, those started as soon as I went off HRT. A good friend and I went to see "Menopause the Musical" a couple weeks ago. That was good laugh therapy. Did the night sweats dwindle away after you finished your five years?
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Tabb55-
Hot flashes while on Tamoxifen can come and go. I started Tam back in May, started having kind of minor hot flashes about a month later, but then they stopped. Then they started again. Now I haven't had one since early September! Between that and sporadic periods (I used to be very regular) Tam keeps me wondering. But believe me, I am grateful for being lucky with few, manageable side effects.
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TAB, your link took me to the oncotype testing site, not what I was expecting! Remember, the ER+ and HER2- means it's slow growing, so skipping chemo isn't unheard of. I think of Tamoxifen or Armomasin as "chemo" as in the fact that your are taking something for your cancer. I, on the other hand, am taking nothing! And feel like a sitting duck!!!
I think the biggest surprise I've seen is Dianarose! 17/17 nodes and an oncotype score of 6!!! BUT, ER+ and HER2-, which indicate slow growing...!! So, it's been there for a while.
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Had an infusion today and another one in a week. I think I am just getting anxious to be done. I was there for about 3 hours. Just wanted out. They do feed my friend and I a good lunch each time we go so that helps pass the time and I have 2 male nurses who are so funny. I then took my friend to my hair stylists to have her hair cut for her birthday. She was surprized and happy. She has been a true friend and has gone with me to all of my appointments, even my therapy and fills. What is funny is she is my ex-husbands new wife and we are best of friends. I think we understand each other and find myself telling her I am so sorry I didn't crash her wedding and kidnap her until she came to her senses.
Barbe1958- They surgeon thinks my cancer has been there from when I had it the first round which was over 8 yrs ago. Little bastards. I got my appointment to get set up for rads so if there are any left we will just nuke them. I want to open my own bakery next yr so forward I go.
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Isn't it possible that Dianarose's OncoDx score of 6 was from a different tumor than that which invaded her nodes? She had multiple lesions, both IDC and ILC in there.
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Elimar- It makes you wonder how acurate this test is if we are not sure which one is being tested for those of us with multiple tumors.
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Elimar- I do know that both were er and pr positive.
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My guess would be that they would send off a sample from the largest mass. In a perfect world, if there are multiple masses and one is IDC and one is ILC, I would think each sample would deserve its own test, but at close to $5,000 for each OncoDx test, maybe insurance does not allow for something like that. ???
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Tab55, my night sweats dwindled during cold months, and once off Tamox, almost stopped. After finishing Aromasin, I haven't had any night sweats, but I do still wake two or three times needing to shed the covers, but if I lay still for just about a minute, I return to normal, put covers back on (if it's a cover night to begin with) and then I'm fine. No nightgown changes or towels on my side of the bed anymore, which had been a regular occurrence. It's the little things that make me happy
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Interesting discussion going on about Oncotype & chemo. My score was about as helpful to me as Elimar's was - it was 17, technically in the low range but the highest low number. What spurred me on to do the chemo boiled down to my tumor being Grade 3. Like Barbe says, it grows fast and so hopefully it was running around being all active while the chemo zapped the little boogers.
Marlegal - did your MO switch you to Aromasin after 3 1/2 years on the Tamoxifen or did you request that? I've heard some oncs think it makes for a more effective bang for your buck to combine an AI and Tamoxifen like that.
I've been on Tamoxifen for almost 2 years and so far just minimal SEs. Except for the hot flashes - they are crazy! I don't know if you ladies know that Katy Perry song, "Hot and Cold", but I sing that all the time as I'm taking off layers of clothes and adding them back 10 minutes later. I just turned the air conditioning on for about 5 minutes even though it said it was 70 degrees in here - I was burning up! That was about 30 minutes ago and now I'm freezing and under a blanket. I'm this close to turning the heat on now. Good thing I'm divorced - I know that would drive my ex crazy!
Dianarose - that's a good question about multiple tumors and Oncotype and then how your Oncotype could be so low with 17 nodes involved. I have seen so many women in that position where the Oncotype doesn't match the "presentation". I would still be inclined to go with how my BC presented over the Oncotype.
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Heartnsoul-
Interesting is right. U may have seen, I am node negative, grade 2, BMX, onco type 32. ER/PR +, her 2 - .... Hmmm0 -
Hey Dakota, I did see that! Sherry had a similar situation, I think her Oncotype was 23 and her MO preferred Zometa instead of chemo for her. I had been talking to her about that because my MO was thinking of adding that to my regimen, but then my MO quit talking about it so I'll just let it drop, too!
But there are lots of studies saying that Zometa reduces your chances of recurrence. Maybe ask your MO about that. It's all so hard because you're a Grade 1. My MO said it was my grade that made her decide I needed chemo, so that's a big factor to consider, too. I'm sorry, that decision is soooo hard to make! Just my onc bringing up Zometa sent me back into a tailspin like when I was first diagnosed. haha, it doesn't take much to dredge up the old fears again...
*Oops! I see you are a Grade 2 - ugh! It's that "in the middle thing" again! Maybe you could find your mitotic rate that Elimar was talking about. That would be helpful.
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Heart soul -
I will mention it tomorrow. Thanks for the info. I am petrified because my sister was also dx at 40, opted out of chemo and radiation and had a reoccurrence 5 yrs later. We r both BRCA -, but its just so scary.0 -
I'm so sorry!! I had to re-live that fear in August when they thought I had a new primary or recurrence. I had to have another biopsy because the radiologist said it was highly probable for malignancy. I was so scared! It turned out to be nothing, but the FEAR came back so fast! Another thing you might ask about is your age - for younger women they will recommend chemo more often. My MO was hesistant to recommend anything - she just laid out the cards and said it was up to me. It wasn't until I asked what Grade 3 meant that she stepped out of her passive role and came right out and recommended it. See how your MO feels about your age and how much emphasis he/she puts on that factor.
Also, a lot of times the hormonals are enough. There are studies about chemo + hormonal treatment vs hormonal treatment alone for early stagers. Ask your onc about those studies, too. I hope your doctor doesn't play the passive role - I didn't like that since almost everything fell in the middle. But the one factor (grade) made the difference for me. Try to pin your MO down and then later, when you're alone, you can weigh how they responded and maybe get a better feeling for what you should do. Boy, I wish I could think of something else that could possibly help! (((Dakota)))
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hey girls I was away for the weekend seeing my grandbabies. a six year old and 9 month old twins. Had a blast but my kids wear me out. Have been crazy busy this week so just really checking BCO.
Interesting discussion on oncotype and heartnsoul was right I was a 23, stage 1, grade 1 and ER+. My score was higher because even thou I am ER+ I am very low positive. My MO was following the Zometa study and was liking what he saw and thought it would work better for me than chemo so that is what I have been doing. Has been pretty easy. I get a treatment every 6 months. I have four treatments left to do and 3.5 years left on Tamoxifen. If I had had node envollment my MO said it would have been chemo
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Interesting that your score was 23 with low ER + Sherryc. I am >95% ER + and a 19. I am grade 2 with 1.3 tumor size. Both MO's said hormone therapy would be sufficient, so no chemo. I am just over a week on Tamoxifen. I am feeling it. I look forward to feeling better. I too will switch to AI in a few years because I am already post menopausal.
Getting back to this >95% ER+ issue. I saw dietician yesterday and he is recommending plant based diet. Had green tea today with Agave sweetener and I did not like it. I'd much rather have my large McDonalds iced tea, half sweet! I wish I didn't like food. These are going to be some difficult changes for me. So much to learn, but it is all good. Just need to rewire my brain!0 -
I am approaching almost three years of Tamoxification. I still get night flushes that last ten minutes or so. I've never soaked thru' any bed linen, but I burn up and have to throw off the covers and just lay there awake til I cool off enough to fall back asleep. My sleep does suffer.
Sherryc, You bring up another factor about being ER+/PR+, but just not a high percentage. That could be the difference right there. I don't know if all biopsy or path. reports contain this information, but it seems important.
Dakota212, That is a surprising score! Do you know the percentages on your hormone receptor status?
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MMMMM margarita's yummmm Just up my river of drinks lol
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I go see the surgen tomorrow had the breast MRI done Tuesday very nerves we are talking reconstruction after surgery will see what the game plan is tomorrow ......
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heartnsoul - my onc followed the practice of switching from tamox to arom after I was totally post-menopausal, and also cited the benefits of following tamox with something else for the balance of the 5 yrs
momto7, I'll start the pocket party for you tomorrow. here's my contribution, so make sure to wear baggy pants
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Not sure why this part didn't post above, so sorry
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Leave room in the pocket for me!
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Momto7,
Pocket party!! I see you had lumpectomy. Are they proceeding with mastectomy? I hope you got a good night's sleep (in case you don't read til tomorrow) and feel good about meeting with surgeon.0 -
Elimar, love the skeleton pic at top! Does Tamoxifen make you tired still? I get quite nauseated off and on. It's tolerable though. Are you switching to AI's or just Tamoxifen?
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Marlegal, the pic didn't post with the Cheetos because everyone knows it's RED wine that goes with Cheetos, not white!! hehehehehehhee
Count me in for the pocket party!!!
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Oh Barbe...you know cheese and white wine were made for each other!!! Just no more than those two glasses a week, right? Ha - I think I exceeded my weekly allotment about an hour ago
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Cheese and RED wine go quite well together as well, and as Cheetos are a finely spiced AND baked delicacy, the deeper reds bring out the low-notes of your taste buds.
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I am scheduled for a mascetomy on November 8th the MRI showed a small 8mm lobular mass in the centeral left breast that did not show up before my dr said she thought it is best I have one I hate this I have so many questions and I am scared they will be taking both breasts and then do reconstruction in a month or so
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Not sure why this part didn't post above, so sorry