Pondering to stop it all.

Day-

I hear you. I was more afraid of lymphdema than a mastectomy.

Have you considered anything other than chemo? In my situation, chemo was not suggested for me but if it had been, I probably would have done it at the time. I am not sure that I would consider it now that I have had time to really think about it. But that is only my opinion. Most others would disagree with me. I would try a more natural approach which is what I am trying.

Good luck to you what ever you decide to do. You have been thru alot. Cancer sucks!

I finished up the 4 cycles of TC because I was already fat and bald so I might as well!

I wasn't a happy chemo patient. I felt like crap most of the time and for 7-10 days it wasn't a question of how to get my exercise, it was a question of could I walk from the bedroom to the kitchen.  But I don't regret it now. Especially when the side effect of the hormonals make me question how long I will last on them, I'm glad to have that 10% already on my side.

I had a positive sentinel node, so had the axillary dissection. It's the one part of this that I wish I had questioned and didn't. None of the other nodes were affected, so I have mild LE and a numb underarm for no good reason. I would push the doctors more on why it is necessary for you. 

So that's my advice, for what it's worth. Drag yourself through the chemo. Push for how important the axillary dissection really is (especially if you've done the chemo). See if you can get some good info about the relative value of an oophorectomy vs. tamoxifen. The good thing about tamoxifen (and AIs) is you can take it one day at a time, you don't have to make a final decision about them.

Sorry you've had such a tough go. 

Day, you have to make your own decision, but I'll give you my opinion.

Since you're half-way through the chemo, finish up. You already feel miserable so you might as well finish and get the maximum benefit. As far as the ALND, the most important questions to ask are - how would this change my treatment? What advantage is there to removing the nodes? If it wouldn't change your treatment or have an advantage for you, then why bother?

As far as the ooph - is it being recommended so you can go on an AI instead of tamoxifen or to reduce the risk of ovarian ca? The reason for that will determine what you do about it. Since you're Stage IIb, it's unlikely that surgery would be recommended instead of using one of those meds.

As far as being depressed & complaining all the time - well, yeah, of course you feel miserable. You might want to find things that make you feel better, and make sure you do at least one of them every day to try to lift your mood.

 And come here to vent whenever you need to.

Sending you (((((((((hugs))))))))).

Leah

Hugs to you....you have every right to feel the way you do.....this is not easy :>  I just want you to know that statistics out there are old....we are making the statistics now and there is sooo much life to live and enjoy!  I eek every second out of it and plan to get another 30 years if I can.  I know this is very hard stuff you are enduring and it is hard to see the light at the end of the tunnel....but there is.  Just keep putting one foot in front of the other. 

I have brain mets, but a year later I am still here....and don't plan on going anywhere.  The statistics for me are really grim, but they are old!  I have found many people living for years and still going strong after brain mets.  I will be facing procedures and chemo for the rest of my life, but I still enjoy life.  I work full time, I have dinner parties all the time, I do fun things despite stage IV.......it may not seem like it now, but it is worth fighting :>  

Hi, Day ~ I'm glad to hear that you've decided to finish chemo.  As several others have said, I think it sounds like the right decision.  And I'm also with you and those who question the need for a ALND at this point.  It seems like it would not change your course of tx, so unless your BS can give you a better reason to do it than "standard of care," I would refuse it.

As far as why you might need radiation after chemo, they do 2 different things.  Chemo goes after any cells that have escaped into our lymph system or blood supply.  Radiation, on the other hand, basically sterilizes the areas where the bc was and ideally prevents it from ever recurring there again, which it is prone to do.  But I'm wondering if you might want to talk to another rad onc -- get another opinion about whether you really need it.  I think most proactive women have the same fears you do about LE, but the rad onc I finally chose really listened to my concerns and was able to explain why LE and heart damage (my other concern) should not be an issue with my particular situation. 

Oh, gosh, I can so relate to how incredibly weak & crappy you're feeling!  I remember looking in the mirror during chemo and feeling like I didn't even know who I was, not to mention being so weak that I was barely being able to climb a flight of stairs.  But I have to tell you that with time (and it does take time), you will get your life back.  You're just at a really rough place right now, but there is light at the end of the tunnel.  Our bodies have a tremendous capacity to heal and renew.  And I think it's great that you're questioning your tx and not just blindly following what you're being told.  More than one doctor told me that women who do this actually do better than those who don't inform themselves and just do whatever they're told without ever questioning those recommendations.  

Please hang in there!  I'm praying for you ~  Deanna

After my SNB, with 1mm in one node, I decided not to have more nodes removed.  My surgeon had me talk to my future ONC. before my 2nd surgery to get a clearer margin, and the Onc. said more nodes wouldn't change my treatment. Good luck to you Day, and we all feel your pain.

Day, I just saw this thread today.  I'm sorry I didn't notice it earlier; but most of the things I would have told you have been said by others anyway.

I was on the same chemo bus that revkat was on, when it went over the cliff.  I had 4 rounds of Taxotere & Cytoxan, 3 weeks apart; my last infusion was 2 years ago this month.  My tumor was smaller than yours (1.8 cm), and my sentinel nodes (3 of 'em) were all negative; but my Oncotype score was very worrisome (26) and there were some other details that warranted a recommendation of chemo by both the oncos I consulted.  I have no regrets at all about doing chemo, despite what I'm about to say....

Chemo was a miserable experience that I did not enjoy one single bit.  It even p*ssed me off when someone started a thread on the Chemo board a few weeks ago, proclaiming that TC "wasn't so bad", and she was pretending she was enjoying "a day at the beach" at her infusion center.  Yeah, right.  To each her own, I guess.

Instead of enjoying a metaphorical "day at the beach," I groveled and b*tched and whimpered along with most of the women on the Taxotere & Cytoxan thread, as well as the May '08 (and April '08) Chemo group.  Misery loves company, y'know? 

I was ready for the hair loss -- psychologically and physically -- but I wasn't prepared for what I really looked like in the mirror.  I took some "bald" pics, but did not show them to anyone and have since destroyed the files.  I acted tough and resilient; but I was faking it, because I looked sick -- like a cancer patient -- even when I felt pretty good.  Much, much later at a family gathering, some close relatives proclaimed that they were "so proud" of me, because I had been "so STRONG"; they said they didn't know how I "could be that strong" (etc., etc., as they sat there weeping).  Sheesh.  I didn't feel strong.  After all, what are ya gonna do, huh?  Just slog through it...

Despite my onco's warnings, I also wasn't ready for the nasty SE's you are experiencing now.  Exercise every day?  Continue working full-time?  HAH!  Like you, I felt fortunate when I could crawl out of bed (or, more likely, out of my recliner) and stumble to the refrigerator for a lime popsicle or some vanilla pudding.  Or, to rinse my mouth with the poor woman's version of Biotene:  warm water with table salt & baking soda.

But, like you, I had good days as well as bad ones.  And, time moved on, until there I was, watching those goofy chemo nurses singing to me and doing their traditional line-dance on my last day of chemo.  Three weeks later, I was feeling pretty good -- and things gradually got better, until my hair grew back and the soreness was gone and I was okay.

I'm glad to see you are leaning toward finishing your last two rounds of chemo.  Ten percent benefit is a big deal in the cancer world.  You've experienced the worst of it, and it sounds like you have a chemo team (onco, nurses) you can trust.

As for the full axillary dissection, ... I don't know.  If I were you, I would seek a second opinion on that.  There is a new study that was presented at this month's ASCO meeting claiming that ALND does not provide a benefit health-wise (no difference in survival, I think) in someone who had just one or two positive sentinel nodes.  But, the women in that study all had radiation, which probably zapped any cells that might have remained in their nodes.  Your profile says your tumor was between 4 and 5 cm; so you're on the edge of the "rads recommended" group. (My surgeon said rads were unnecessary after a mast, unless the tumor was larger than 5 cm or there were more than 3 positive nodes.)  I would want a consult on that stuff.  You should be able to get a 2nd opinion -- you're in a good part of the country for that.

The last thing I want to say is that the frustration and pain and crushing fatigue you are feeling are, unfortunately, perfectly normal in someone at this stage of her treatment.  I was a different person during chemo -- I was angry a lot, and afraid, and short-tempered.  My dh understood, and provided just the right amount of sympathy and encouragement (and hand-holding, and emergency trips to the supermarket to buy more popsicles).  I did get out-and-about occasionally, mostly to the mall where no one recognized me.  I wore a ball cap at a jaunty angle and some big, dangly earrings and more face paint than was necessary.  And I smiled because it felt good to be alive, and to be fighting this monster.

Hugs, Day...

otter

Day Just popping in saw Estepp was posting.

I only had one round of chemo because it almost killed me. No one could explain why. So, I said no more because I wasn't willing to trade off all my other organs for preventive chemo. Oncotype dx was 30. Bad --extensive family history. 

Through my own research I found that the likely cause of my " TREATMENT FAILURE ". was and adverse drug interaction with Norvasc which is an antihypertensive. No one did a drug interaction profile. I found GENELEX>>>GENEMDRX. It has a 30 day free trial and a teaching video. If you go there definitely view the teaching video. I didn't at first LOL. Way easier to use and understand after viewing the video a few times. It is very sophisticated. Way beyond other drug interaction checkers.

It also showed I had a drug interaction with Arimidex and Femara with Norvasc. It identified that each drug was ENHANCED by Norvasc by 25-75%. Translation overdose because it exceeds the recommended dose established by clinical trials. Aromasin is ENHANCED by Norvasc by 150%.

Had I been advised re: the drug interaction prior to chemo or AI's. My cardiologist and I could have opted for a different drug.

In all three cases I was overdosed because of the drug interaction with Norvasc. I'm still living with the damage caused by these interactions. The term in the industry is called Adverse Drug Interaction---abbreviated ADR.  I suggest you look at the site. You may find that there is an ADR that your Onc and Pharmasist didn't know about.

In the iniatal research of SLN bx., the goal wasn't to recommend complete lymph node dissection. Somewhere in the research it changed. My sister was dx'd 6 months before the SLN approach became the standard. 1996. Then it was to identify what was needed to be removed with a definitive drainage area to indicate what was need to be removed.

When I was dx'd in 2009, the standard became one node positive --out they all came. I objected to it ,but had extenuating circumstances of a brain tumor being found at the same time, and a traumatic brain injury. Thankfully, I was node negative because my brain wasn't working right, had there been a positive node, I signed a consent for complete dissection. Now brain functioning somewhat better. Now it would be no way for a complete dissection.I would have changed doc's until I found one who would not have done a complete dissection.

Never had they energy after dx to go back and research why the intial SLN dissection research had so radically changed from the original treatment goals. Very glad to hear research is now beginning to reverse this trend.

DAY so sorry about the connection to Chernobyl. That sucks

Namaste Sheila