Stage II Forum

Carolyn:  Your mom sounds like an exceptional person.  What a wonderful role model for all of us!  Keep living your life and don't a little thing like bc get your down! 

Ami:  Your onco can probably tell you based off the chemo regimen what the risks are of chemo and may even be able to give you an idea of recurrance without it so you can decide.  This web site might help you too:  http://lifemath.net/cancer/    You can plug in data specific to you and try different ways and see what comes up.

Paula

I had 2 positive nodes and doc insisted on chemo.  

grannydukes, your also LCIS, stage 1 grade 1 -- so many variables  -- whew!

Lifemath is a great site for starters but the doctors have a better one to access your risk. They also know all the specifics about your condition. Here is what they determined for me. Won't be able to put in the graph but maybe this will give you the general idea.

Age: 57, Gen Health: Good, ER+,  Grade 2, Tumor size 2.1, Nodes Involved 1, Chemotherapy regimen: CA 4 + T 12

Decision: No additional therapy: 39 out of 100 women are alive and w/o cancer in 10 years. 56 out of 100 relapse, 5  out of 100 die of other causes.

Decision: Hormonal therapy (Tamoxifen or other): 25 (of the 56 that would have relapsed) are alive and w/o cancer because of therapy.

Decision: Chemotherapy: 16 (of the 56 that would have relapsed) are alive and w/o cancer because of therapy.

Decision: Combined Therapy: 35 (of the 56 that would have relapsed) are alive and w/o cancer because of therapy.

Result: Out of the 56 with my kind of stats who take the combined therapy (56-35= 21%) there is  21% chance of recurrence. On top of this, I had radiation which took me down to about a 12 % risk of recurrence. Hope this helps in some small way. I would have never gone through the chemo if I didn't think it was worth it in reducing my risk of relapse. Also remember this is just a tool in helping you decide. All these stats vary based on many factors and they are just an educated approximation. Also note how important hormone theapy is after chemo and rads.

    Blessings, Carolyn

hope... I can relate to your questions completely. I don't know if we ever get to the point that we are completely happy with our decisions. I was told I could go either way-mastectomy or lumpectomy but that with a lumpectomy you have to have radiation to equal the survival results of a mastectomy. I did a bit of research and was convinced the odds were equal Yet when it came down to decision time I told the surgeon I still was undecided. That I needed her help it and that I wasn't scared of the extra surgeries (associated with the reconstruction) but why have unnecessary surgery. I told her I could live w/o a nipple (mine too was close to the areola) and wasn't afraid of radiation. So, she looked over all my information and came back into the room talking lumpectomy. That's what I had. If it comes back I'll do the mastectomy then.

It would be nice if it were an easier process. Your so crazy at the time and in a bit of a rush to get the cancer out. But looking back, you really do have more time than you think (unless yours is fast growing). Hang in there, get all the info you can and talk with your doctors.

    Blessings, Carolyn

Nela, Based on what you have written about your diagnosis, and assuming this is correct, I would be amazed if you didn't need chemotherapy.

Please get a second opinion. - Claire

Thank you ladies for the messages here and privately. Today it totally put me back on track and feeling good about my choices again! 

My oncologist fell and had to have surgery on her spine... they had to reschedule me to the 29th..but they want me to have chemo before 6 weeks after the surgery. They told me they are being a little unconventional, but she set up my appointments(her assistant and then the appt girl with the dates) to start out so we don't loose time.  I'll be having a heart scan, Then I will meet with the Onco(the 29th), The next day chemo training, and chemo two days later- Dec.2. She said I will be there 4 hours and it will be an iv drip. The appointment girl could not tell me more. (what kind etc, and I figured that. I will learn on the 29th.

Knowing the date is nice because everyone asks me when chemo will start! Well, I am a little anxious, but ready to get going. I found a cute hat, hair or no hair it is cute and might come in handy.

I did break out the wine tonight. I have been a good girl since my surgery-haven't had any since 10/28. I will try not to overdo- a sure sign will be posts later tonight..with lots of affection! So that being said, I do love you guys already  so it won't be anything new!  hugs! Cathy

Nela,

I think most of us here are in agreement you should at least be offered chemo with positive lymph nodes and a fair sized grade 3 tumor. You can always get a second opinion. I think I would question your Onc his/her reasoning about no chemo. It does not seem right.

Best wishes

Just got back from onco consult #2 - at least she said to go for second gen rather than third gen chemo.  Apparently I'm somewhat unusual because my node tumor was the same size as the breast tumor (,05cm).  So much trouble over so small tumors - but they appear to be the traveling kind.... so TC chemo 4 treatments every 21 days, then rads, then Tamoxifen.  I am so not looking forward to this... oh and something about an self-injection before every treatment to keep the white cells up.  I'm still worried about neropathy, though.... any experiences with that?

Ami - the shot you're talking about is Neulasta or Neupegen. It is given 24hrs after chemo and it helps boost up your wbc. You inject in your tummy or my sister injects mine in the fatty part of my arm.  I'm also doing TC x4. I've done 2 so far and my 3rd one is on friday.

I haven't experienced neuropathy yet... My s/e were mostly mouth issues and gums issues. I am now experiencing some fingertip / nail issue with my index finger only. It's extremely painful and at the tip right under the nail, there's a black mark and blood and something oozing - so not sure what that is although I do know that Taxotere is known for nail problems. They will put your hands and feet on ice during treatment.

ER 90% means that 90% of the tumor cells had etrogen receptors, sometimes called "stongly positive"

PR 30% means that 30% of the tumor cells had progesterone receptors.  I believe 30% falls in the "PR positive" range, but I'm not completely sure aobut the numbers on that. 

ER 90% means that anti-estrogen therapy (tamoxifen or an AI) will likely be helpful in preventing a recurrence or met from showing up down the road. 

If the Sentinel Node was positive and the other nodes taken at the same time weren't tested, I think you should talk to a lawyer about a malpractice suit.  That is simply unacceptable. 

Hi ECT and granny dukes - I'm finally resigned to chemo and rads.  Axillary nodes (12) all came back clean, but with the one positive SN I'm kinda stuck.  However, at least it will be TC 4 doses at 3 weeks.  I have to do chemo class and then will probably start the week before Christmas because I'm thinking that will carry me through the holidays....

 Now I'm checking out a "lace front" extension system; I guess its like a find netting wig that adheres to your head for a month or longer at a time.  Anyone try that?

Hey Ami, I have friends who use lacefront (forunately not for this reason) and is works great. That's a great idea, also. I just finished chemo and can't say it was a breeze but it wasn't as bad as I thought. You will get through it! I'm waiting for radiation now and not looking forward to doing that everyday but can't wait to just have to take Herceptin every 3 weeks. Keep your positive attitude and know that you will get through This!

Hey grannydukes, so happy for you on the onco. score. Don't know what I'd do on this one. I didn't have to worry with this in the decision mix since I didn't do the onco. test. My doctors were not thrilled with it - said the verdict is still out on how to best use the information. Then, they told me it would not change what I needed anyway. So, here's my 2 cents worth, (but remember you get what you pay for.)  ----  I think I'd just get another opinion, that way you'll have better piece of mind.     Blessings, Carolyn

hi Caren

you have a good memory.i dont.ha..update. i went to see the rad onc on tues.finally...ive been draggin my feet on all of this and i am doing the rads.its 7 mos.since i had the SN removed and 2 mos since i had the 5 negative nodes removed.if anyone remembers the first dr.made lots of mistakes and he told me no chemo no rads.well im doin the rads.i just hope its not too late.this dr feels it will be beneficial and wants to do 33 tx.5x a week for 6 1/2 wks.im doin it.so i start my tx on wed.thanks for remembering and caring.AND YES I COULD SUE THE FIRST DR.ALL I NEED IS A LAWYER THAT WILL GO AGAINST THE #10 dr. in america.

HUGGGGGGGGGGGGGGGGGS

K

Check the labels though - look for no alcohols of any kind. Walmart has "Fruit of the Earth" 100% aloe with no alcohol. Alcohol is drying and irritating to sensitive skin. CVS also has store brand Aquaphor.