MIDDLE-AGED WOMEN 40-60ish

Anonymous

thanks Linda!

macatacmv

you and me native mainer...... nibbles cottontail.

I have not been feeling well, so all the laughs are so welcome! peeps...... 

My DS and I went on ancestry.com today. He is really into history. Most of the older generation especially on his dad's side is gone, so it is really cool finding out about those relatives. We found his great, great granddad that he was named after, I just thought the name sounded good with the last name, very scottish. Then I named my DD after a friend of mine because the name went well with my DS's name, but my MIL thought I named her after her husband (their granddad). ha, ha, I let her think that. His name was Donald and my DD's name is Dawn. 

Lakegirl1

Daffodil Bubbles checking in,..  Happy Easter!!!

teachermom4

Hi Lakegirl1...

From your signature, it looks like we have a lot in common and I am about one month behind you! I am meeting with MO for the first time tomorrow and I'm guessing she will say chemo is in the cards for me although I don't have my oncotype score yet...I read your posts in the April Chemo thread and second your thoughts!

Sending good wishes to my fellow Illinois gal!

Lakegirl1

HI teachermom4...it looks like we are definitely going down a similar path as we are  very similar in diagnosis. I do have my onco score, which is 6.   On the surface it would appear very low, no chemo.  However, do to my age(43), my kids age(6&8) micro in SNB and tumor larger than initially thought, he recommended chemo. 

I go back May 1 to meet with MO. We shall see what he says. Initially, the plan was for lumpectomy, rads, then chemo. Well, as you can see things changed drastically as I ended up with bmx. I also got a staph infection, which required IV antibiotic via PICC line. I am curious to see if that changes anything. 

Good luck tomorrow, the not knowing part throws me off my game too.  Hopefully, you will get the answers you need and a good action plan. I may not be in control of this journey, but feel much better with an action plan. 

Anonymous

googled "where do peeps go after Easter?" and this is what I found out:

Anonymous

teachermom4, best of luck tomorrow, hoping for the very best.

Wishing the best for you too, lakegirl1

elimar86861

Lakegirl1,  The thought that comes to my mind is that while you would be doing chemo (which, by Onco score results, would not seem to offer much benefit,) you would be delaying the start of Tamoxifen (which, according to Onco results, would give you greater benefit.)  It is puzzling as to how that all would balance out.  Did your doc, by any chance, show you a bar graph from Adjuvant Online?  That's a program that also weighs the benefit of chemo, based on your own individual factors.  That is a bummer about the staph infection.

teachermom4,  I don't know that you should jump to the chemo conclusion.  You have Grade 1 BC, and I would not be surprised if your Onco score came back very low as well.  Grade 1 is just not fast growing, and because of that it is not as susceptible to chemo.  With that and being ER+/PR+, your greatest benefit may also come from Tamoxifen (or an AI, if you are menopausal.) 

Welcome to you both!  Let us know what your treatment plans turn out to be.

barbe1958

Cute 2xA!!!

Lakegirl, I'm surprised your onco type score was only 6 with a grade 2 tumour! So much for the way they used to treat us, eh?? Grade 2 would have been chemo all the way. Why did you have to end up with bmx?

Anonymous

Anonymous

love the new header!

Lakegirl1

Barbe1958...the bmx was totally initiated by me. There was no love lost between me and my boobs!!!   When I was prego with my 1st, mastitis 3 times in 6 weeks, scars from nursing...too big, saggy. My thoughts were if I have to endure this, I want new ones!!!  

Elmira...I met with onco the last week in January. I don't recall if he showed me that info, but I will ask.  I was thinking the same re: tamoxifen ...I thought sooner, in my situation, was better than later. 

I see him May 1, I will follow up with what he says. 

marlegal

Sorry I didn't see the posts about the pineapple recipe before Sunday Next time I'm on regular computer I'll PM those interested with the recipe. It never disappoints and the leftovers re-warm nicely. Thoroughly enjoyed the dd's and g'sons even more

All my best to those having tests this week. I'm available for pocket filling

elimar86861

Lakegirl1, I'm sorry if I wrote a confusing post to you.  It does seem like your doctor is not trusting of the Oncotype score alone, feeling that other factors warrant the use of chemo.  For a lot of us, the use of chemo amounts to doctors taking their best guess on whether we need it or not, and we can never really know if it has helped us or not.  The kind of BC that responds to Tamox. does not grow very fast.  That is why Tamox. is usually given last in the treatment series.

Lakegirl1

Elimar...I'm just trying to wrap my head around this chemo thing!!!  I'm just not quite there!  I am looking for info anywhere I can to make the best decision. I can take the surgery, large fills in TE's, no narco pain meds, but the chemo is my Achilles heel...I am honestly looking for anyway to get out of it.   BUT, I will do whatever it takes to see my girls grow up!!!  They are my reason for all I am doing!!  I think part of my problem is that I don't know "the plan" for chemo, which is driving me crazy!!!  (And I am having a very hard time with the hair thing). 

linda505

Hey Lakegirl1 - I think you should consider getting a second opinion on the chemo thing.  I was/am a little uncomfortable with my chemo plan and I am getting a 2nd opinion on that part of my treatment.  I am going on Wednesday for that.  I told my MO that and he was very supportive of the idea.  I think I need the 2nd opinion just for my peace of mind.  I am pretty sure I will get the same answer from the other MO but my current MO said if it is different we can decide which way to go.  These decision that we are making now are not small everyday decisions - these are big ones and a 2nd opinion is not a bad thing.

Lakegirl1

Linda505...I have been thinking the same thing!!!  I will be looking into that today!!!  

MameMe

Yep, I'm with Linda and would always encourage a second opinion if the plan is dubious or some aspect of it doesn't sit right. On the other hand, Lake, I totally get the fears and resistance to chemo, as it is a big intervention, and even if it is undoubtedly the top choice for tx, its a force to be reckoned with. I feel for anyone facing this and am totally there for support and commiseration! 

Cancer treatment is grownup stuff.

Hugs, Mame

elimar86861

Lakegirl,  While you are looking into things, check if you can find how many times Onco scores are erroneous?  How many times false low scores are given?  In other words, what is the margin for error on that test.  This may be what the doc worries about.  I am only being a bit of a devil's advocate here because you don't have the most clear cut case to do the chemo. 

I did chemo, myself (but it was for another cancer.)  I had cancer in a few nodes.  Although the cancer-y nodes themselves were out, I had to wonder if anything got past them?  So, my chemo was "just in case," and many BC patients get it under the same circumstances.

The hair loss is really the least of your chemo worries.  Although you can't see it, you have to wonder what the chemo is doing to all those healthy cells in your body, like your heart and liver cells.  That is the real worry.  If the chemo upsets your stomach, you won't even give your hair a thought, unless your wig falls into the toilet.  Speaking of hair and wigs tho', this could be a time release your inner red head, or get that "Farrah" or "Rachel" 'do you always thought about.

If you do end up in a grey area as far as chemo decision, you can not think of any decision as being right or wrong, just the one you are least likely to look back on and want to kick yourself for making.  What I wrote might make you think I am anti-chemo; I'm not.  (Well, I am, but only in the sense that I think they are all poison and no one should ever have to do them.)  It is up to every person to get all the info. and make a choice yay or nay.  On this thread, we surely will support whatever you decide to do.  Chemo is the devil, but the bigger devil is BC.

Also, it is normal for your brain to explode while weighing all the thoughts about these medical decisions. Some go with the chemo option for the simple reason that they are too scared not to do it.  I felt too scared not to do it, and I know I have not been the only one.

linda505, Not sure if you have posted on here before but, if not, then welcome.  Just looking at your Dx, I am not sure why AC/T is part of your treatment plan?  Did you have the Oncotype test and have a high score or something?  With your Dx, both Herceptin (for HER2+) and Tamoxifen or an AI (for ER+/PR+) are very common.  I am not understanding why they want to use the "big guns" in a small, slow-growing, ER+/PR+ situation.  How much can you actually benefit from it?  Did the doc ever break down the actual benefit for you?  Chemo is always a risks vs. benefits thing.  Good Luck with your decision too.

Lakegirl1

Elimar...I was looking at my path reports., specifically the info re the nodes. 

Nodes with macrometastases  = 0

Nodes with micrometastases = 1

Nodes with isolated tumor cells = 1

Largest metastatic deposit= 0.55mm

Total of 3 removed.

Also, ER+95%/PR+70% HER2-

I'm just not sure what to think. 

linda505

Hi Elimar - what you wrote is exactly why I am getting a second opinion.  Since I am HER2+ - which in the insurance world means chemo - they will not do (pay for) an oncotype on the her2- tumor.   I had bilateral breast cancer.  My MO feels that since he doesn't know the oncotype score he is going on a path that would treat it as if it is aggressive.  So I get AC DD x4 - then 12 taxol and herceptin and then finish up with herceptin for the balance of the year.  He did not break down the risks/benefits due to the fact that he does not know the score for the her2- tumor.  For this reason - I am going to Moffitt cancer center for a 2nd opinion on the chemo regime.  My MO is very supportive of this decision and will go with what they suggest if it is different than his current plan.  

Oh and thanks for the welcome - I have posted on this thread a couple of times but only recently and in the middle of where artificial flavorings come from LOL

barbe1958

linda505, both your cancers are ER+ and grade one, which are "normally" slow growing breast cancers as well as being small. I can't believe either that you would be getting ACT!!!! That Taxol can really do a number on your heart as has already been mentioned (I think that's the one). I didn't get ANY chemo with my ER/PR+ HER2-, 1cm WITH micromets and ITCs! I'm over 5 years out. For me, if I recur, Tamoxifen will be my first line of defence. AND I had a very, very rare kind of breast cancer, Papillary, which is less than 1-2% of all breast cancers! When I got it, there was only ONE mention of one patient on Google about it. Really stumped my surgeon. Now it's more prevalent in records on Google. I would think that the Herceptin and Tamoxifen would be enough - BUT remember, we are NOT doctors!! We only comment from experience we've seen on this board of almost 150,000 women. When I first joined there was just over 40,000.

Lakegirl, your tumour is bigger and the grade is more aggressive. Don't panic about the nodes, they did their job. I had micromets and ITCs as noted but my grade was never recorded! Stumped my onc, but I was glad to not have to do chemo.

linda505

thanks barbe - and that is why I want a 2nd - I have combed through this board and can't find anyone who has gotten ACT for my diagnosis.

elimar86861

Linda,  Yes, I guess that HER2+ is throwing everything off.  I am not up to the minute on all the chemo decisions out there, but I was thinking that with (targeted therapy) Herceptin, that it was sparing some of the women from having to do the full monty of regular chemo. With your tumor being Grade 1 (which is supposed to indicate a slow-growing tumor, therefore not the most aggressive) how effective can the AC/T be anyway?  Please do report back the info. you get from Moffitt, as I can always learn something new.

Lake, Wow!  With ER+ being 95%, it sure does seem like the Tamox. would give the greatest benefit.  The decision for chemo is not just about "uh-oh, it's in the nodes."  It is about the kind of cancer it is.  Maybe, since you are Grade 2, your doc figures it is growing fast enough for chemo to be effective.  However, the criteria used to determine the Grade are also a part of what determines your Onco score.  So, again, IF the Once score is correct, you have to wonder how effective chemo will even be.

Isn't it just a shame that the methods used to determine WHO gets WHAT are not as sophisticated yet to spare so many women from getting the "shotgun approach" style of treatment.  Still got a long way to go.

linda505

Thanks again - and both of my tumors are highly ER/PR +  both are over 95%  - one is actually 100% on both er and pr

Anonymous

I suggest getting the 2nd opinion, if only for peace of mind. I wish I would have done that back in 1996 as I thought my medical team was proficient and up to date. Wrong assumption! Can't remember the reason now because it's been so long, but went for a 2nd opinion after I was almost completed with chemo. He also sent me for a blind 3rd opinion to one of his colleagues, later found they were both authorities even though a little out of my geographic area. Bottom line: both 2nd and 3rd MO agreed I didn't need chemo in the first place but since I had finished 3 rounds, suggested I finish with the 4th and call it quits, which is exactly what I did. 

Lakegirl1

THANK YOU all...I have someone in mind, but not sure how to go about it.  Do I contact the 2nd MD or do I talk with my MO 1st?  

When I initially met with him, he was receptive to the idea re: 2nd opinion.  He mentioned Barnes Hospital in St Louis and Northwestern in Chicago.  Do you just go with whom they throw out there or do you find your own? So many questions, so little time!!!

linda505

Lakegirl - I found my own - only because I knew that I wanted to go to Moffitt as they are considered Florida's top cancer center and they have a specialized breast cancer area.  I told my MO after I made my appt only because I knew i was seeing in the a day or so after I made the appt.  When I told him I was getting a second he was happy to give me a recommendation.  I did contact my insurance company first to make sure that they covered 2nd opinions and made sure that Moffitt was in my network.

elimar86861

Lakegirl, I only went for a second opinion one time (not for BC) and I didn't want a colleague of my first doctor which, with the limited options in my city, meant I had to go out of network.  If you end up doing that, you will have to probably sign a few forms so that your new doc can get access to your history/surgical report/pathology because they might be on a different computer network.  If you have your own copies, you can take them to your appt.  Or, in a large metro area, you could possibly find someone within the same hospital system, but a different practice. 

------------------------

My big news was that yesterday, when I was in the kitchen, I felt a single grain of rice with the ball of my foot.  The other day, for the first time, my toes could tell that the bath water was hot.  I must be making progress with my foot neuropathy, but the changes are really imperceptible on a day-to-dy basis.

barbe1958

el, that's FABULOUS news!!!! I'm sure you have shared it on a neuropathy thread. It will give so many others hope....