Hoping I did not wait too long

Hi Ktjay,

Glad you are home and on the mend!  Do stay positive.  One node does not necessarily mean chemo or rads.  There are a ton of other things involved in that decision!  If they are not already running an Oncotype test, you might want to request one.  That taked into consideration up to 3 positive nodes and depending on the results it will help factor into your chemo decision.

Good luck and continue to feel better!

Hi ktjay, I'm doing OK, thanks for asking. MY official dx came back, ER+, PR+, Her2-. T1N1M0. I am having chemo 1st, Cytoxan and Taxotere every 3wks x 6 rounds. Then I'll wait 3 wks, then lumpectomy and axillary dissection, then 6 wks, then radiation 5/wk for 6 1/2 weeks. Then hormone therapy for 10 years. Figure I'll be done by Thanksgiving, have my own head of hair by Christmas. I went to the rad oncologist yesterday for a meet and greet kinda thing. She explained to my that although my CA is only a grade 1, it has left the "capsule" of at least 2 lymph nodes, hence the chemo first. She said the actual tumor is very small, only about a centimeter but the CA seems to be getting ready to make a run for it. I guess that's part of it being lobular, it can just kinda grow like a spider web. I had my first chemo last Friday, so far I'm having minimal SE. A little nausea, a little constipation, a little bone pain, but none of it anything that Tylenol, Compazine and prune juice haven't fixed. Tomorrow is my 1st day back at work, I took off for this 1st round to see how it'd be. I'm hoping this is the worst of it, trying to not let my mind go to far beyond the moment. 

So you're done with surgery, when do you start chemo? Any news on your HER2 status yet? How'd your reconstruction turn out? It's hard to believe how fast our worlds have turned upside down, isn't it? I got my dx on Valentine's Day and 1 month to the day later was getting my 1st chemo. Seems like Key West was months ago though. I think you were just about a week ahead of me and you're already post-op. How's the pain? Are you getting the ACT chemo? Glad to hear you're moving along with your tx… keep in touch

Hi Ktjay,

I'm doing well, thanks for asking!  Hope you are continuing to feel better every day.  My arms are still tight!!  I was lucky to come out of my MX both times with full range of motion.  What they neglected to tell me is that just because I could didn't mean I should.  They said you probably won't be able to lift your arm above your shoulder.  I kinda took that as a challenge!!

I would suggest you go to a LE certified therapist ASAP.  They can show you good easy stretches that will make a huge difference.  But also, the massage feels great!!!

I did my surgeries in stages because i was on crutches when I got diagnosed.  I was still taking stairs one at a time and having trouble getting off the couch and potty with my bum foot! (dislocated, shattered ankle!) I could not imaging having both arms and one foot out of commission all at once, so I did one boob at a time.  It really worked out great that way.

I felt great right after my exchange!  Probably too great because I was back at my normal hectic pace right away.  I didn't realize it had only been 6 weeks until my incision popped open the tiniest bit, during and ice storm in Atlanta that had the roads closed :0(   By the time my doc saw me I had an infection and lost my right implant.  So now I sit with a drain, flatter than I was at my original MX and wait to start over.  UGH

Did you get that Oncotype test ordered????  That will give you a big puzzle piece for the chemo question.  Did they do a Sentinal Node Biopsy??

You and Genny have a great weekend!!

Ktjay - So the actual benefit to you of chemo is 8%? I am not questioning your decision but 8% is not that high when set against statistics (based on solid research) that there is a 50% reduction in recurrence risk from daily exercise for women who have had BC...........that is 42% higher than chemo.........and are your stats based on 100% chance of getting BC again or on the percentage of people who recur, which would be lower. I am a great believer in listening to your gut and I don´t think your discomfort is necessarily down to fear............everyone is different.  For me the benefit of chemo I was given was between 8 and 13%, I chose not to do it as the chances of getting severe life quality affecting side effects from chemo were 25% +++ FOR ME.  I am happy with my decision, I know it was right for me no matter what happens in the future.  What do you sense is right for you if you take your own self criticism and judgement as being scared out of the equation?

Hi Ktjay, been meaning to get back to you, I am doing fine, have now had 2 rounds of chemo. I am getting Taxotere and Cytoxan. The side effects for me have been very tolerable, only mild nausea, mild constipation. My hair has fallen out and I have these bumps on my scalp that are tender but all and all it's not been bad. I think I'm more afraid of the radiation than anything, but that's way down the road. Both of my grandmothers, 2 of my mom's sisters and 1 cousin have had BC, all in their 40's or 50's. My mom did not have it and I did not test positive for the gene. My biggest dilemma is whether to go with my MO and surgeon's opinion and just have the lumpectomy. They seemed convinced that it is all that is needed but I'm so worried about being right back here in a few years, especially given the fact that I know at least 2 nodes are involved and 1 had an extra nodal extension. They have not even offered me a choice at this point. I am going to see the MO before my next appt and talk to her more about this. When I get done with chemo, I will have another MRI before surgery and I may get a second opinion at that point.

I'm glad your surgery went well, I hope you get through chemo with the same ease. The fact that you are in shape and take care of yourself will help a lot I think, and probably made the surgery go as well as it did. When do you start and which drugs?

 Well I am babysitting my 3 month old granddaughter now and she's starting to fuss. Talk to ya soon

Hi Ktjay, So many women on the lobular site, probably around 50% went into surgery thinking it was stage 2 and ended up stage 3. My administrator where I work had ILC last year and did the surgery first. They wanted to do a mastectomy so she told them to just take both and they ended up finding trace cells in the other one. So she asked her Dr if she would've ended up right back there in a couple of years and he told her yes. I like my MO and surgeon and they both com highly recommended, they both thought the neoadjuvant therapy was the way to go for me, said it should shrink it to almost nothing and then they can just remove it. The fact that we already know of lymph node involvement and it's grade 1 which would mean it's been there quite awhile. There is plenty of info on IDC but not so much on ILC and I know they treat them the same but it's got me concerned. I just need to talk to my MO more about it, I haven't seen her since my initial consult, been dealing with the CNP since. The lump that I could feel has shrunk quite a bit after 2 tx's so I guess it's working. I've asked the women on the ILC thread and without telling me what to do I can tell most of them would not have been comfortable with a lumpectomy… it's so much to think about.

On my 2nd round with the Taxotere I took frozen peas and ace bandages. 2 bags on the bottoms of each foot and covering my toes and them my DH wrapped them for me, and I just held a bag in each hand and squished my fingernails into them hoping to ward off the neuropathy and nail damage, so far so good. It was fine since I only had to do it while the Taxotere dripped. Then I just brought the peas home and put em' back in the freezer till next time.… Right now I am battling with folliculitis really bad in my scalp. The Dr called me in some doxycycline, hopefully that will help.

Are you doing your yoga at home or in a class? I went to a yoga class a few days after my 1st chemo but there were about 30 people there and I was nervous about my immune system, being so close with so many. I haven't been able to get myself into it at home.  I like to run but have gotten away from it with this brutal winter, now that it's getting nicer I hope to get back to it. At least maybe start jogging and enter some 5k's. 

Well good luck with everything, hope you don't get too many SE's, how often are you having the chemo. Are you getting a port?

Hi Ktjay,

Im a newly diagnosed ilc pt. Anxiously awaiting my (3 WEEK) wait for my surgeon consultation on 4/21. I have a 2.3cm (according to the mri) tumor in my left breast. My right breast according to mri has a few cysts under the nipple, but my nipple is sore and i have a reddish brown discharge (if i squeeze).  I've spent the past two weeks reading these boards sometimes fearing the worst.  Like you've all said, the waiting is the hardest part.

Ive enjoyed reading the conversation between you and Genny.  My heart ached on that one entry Genny made after the pelvic u/s when she said she was having a meltdown.  Oh... How many times have i been there. One moment i feel strong and powerful and the next my world is falling down around me!  

I think im leaning towards wanting a bmx.  Ive spoken with one surgeon whose recommendation was lumpectomy, then an oncologist who pretty much echoed that as standard. But ive read so many accounts where woman against that advice decided on bmx and found cancer in the other breast.  Fortunately yours did not, but it doesnt sound like you regretted your decsion?!

I have a question about your reconstruction. It looks like most posts ive read ladies get spacers put in at initial surgery then have reconstruction done 3-6-12 months later.  You did yours with 1st surgery right? What type of reconstruction was it? Are you happy with the results? I realize it's only been about a month! You mentioned they went bigger, the day after surgery. Did the swelling go down?  What size were you before and what size after?

In reading about reconstructions where they take the muscle from your stomach it sounds so scary. And the months of stretching skin?  I feel like my primary agenda is to be healthy and cured of cancer and vanity places a second role.  But in reading your account.... Do it all at once it didnt sound as bad?  I was just wondering if you could comment on that decision and how it went and how you feel about it.

Im 43 years old. A nice c cup and have always enjoyed my breasts (and my husband too).  Ive often joked recently, "i think i have the most loved breasts, i dont understand why they're causing me so much trouble right now!"  I'm not sure how i would feel without that contour on my chest?

Thanks for any and all insight.

You ladies are all so amazing! Im so happy i found this site!

Smiles & Hugs,

Blu

Hi Ktjay, I'm doing fine, haven't been on the boards much lately. I had my 3rd chemo 2 weeks ago and it was the roughest I guess but only in terms of fatigue. I had the chemo on a Friday and tried to run(jog) a 5K on Sunday. It took me 38 minutes a knocked the snot out of me for the rest of the day, and pretty much the next day too, 3 miles used to be nothing for me. I won't be doing it again till this is over, it just wasn't worth the fatigue that followed. That Monday at work even my blow dryer seemed to weigh 50 lbs. Even last weekend I took a 2 hr nap in the middle of the day, can't remember ever doing that. Other than that and the scalp thing I've been really lucky. Very little nausea, no neuropathy and I still have some eyelashes and eyebrows and peach fuzz on my head. I still don't know what I'm going to do about surgery yet when I'm all done. I have an appt with the surgeon between my last 2 tx's and I'm sure she'll order and MRI and I'm hoping she can help me figure it all out. If I go with the lumpectomy only, I would have to have yearly MRI's. I have a $5000 deductible and an MRI is $4000 so that in itself is something to think about. I'm trying to stay in the moment while still weighing my options. I'll know exactly what I'm doing by the end of June I figure.

Well I have to go to work now, you've had 2 tx's? Are yours every 2 wks or 3? Anyway, I do have to go, 1st customer at 9. I try and pop in tonight or this weekend. How is your daughter with the heart condition? And your 2 others, everyone handling it OK?

Gotta go bye for now

Hi Ktjay, I have been doing some more research on these threads and was just thinking of you too. Great minds think alike I guess. I am doing ok, the 3rd chemo is the one that kicked my butt too. With the 1st 2 tx, I'd be tired for the first 10 days, then great, like my old self for the second 10 days. Then I got the 3rd and kept waiting to feel good and it just never happened. Then it came time for my 4th and I was still tired from the 3rd. The MO says it's normal. I got pretty down about it for awhile but now I'm learning that the secret is to pace yourself as much as possible. I figure out what is most important for each day and stick with trying to get that done. No working out, no running, just doing what I need to do and that's it. I am working 3 days/wk and have cut back to no more than 7/hrs a day. It sucks but it's just how it has to be I guess. My DH has been great, I take naps on my days off and I have never done such a thing so he realizes how tired I get. I'm now 9 days since my 4th tx and no folliculitis or nausea this time. Just this darned fatigue. My Mo put me on Effexor both to help with the depression and hot flashes and it does seem to be helping. I'm sleeping better with hot flashes waking me up only once or twice a night instead of all night long. I take a 0.5 mg Xanax before bed each night too. I'm still combing over info trying to sort out this lumpectomy vs BMX thing though I think I'm leaning toward the BMX. I just think in the long run I'd be more at piece in the years to come. I forget are you getting Taxotere and Cytoxan? Are you icing your fingers and toes? Any neuropathy? Hope you're having a great holiday weekend, what state are you in? Anyway... pace yourself, we'll be done eventually, and you'll really be done, your surgery is over. How is the healing going?