2012 sisters

Brooklynmom

Hi- would like a little info / support from 2012 sisters. Met w my med onc first time today -Dr. Fornier at Sloan Kettering in NYC (had surgery there) was supposed to get results of oncotype. Was told they couldn't process it- test did not work and needed to be redone. The mo explained certain things like how cells could be left behind from surgery etc and said in my case ( positive node but "protocol" says no additional surgery ) she gave me a "choice" of

CMF every 3 weeks x 8 treatments ( chemo w/ less se) & radiation and armidex or just radiation & armidex. Said for example if oncotype was 20 radiation & hormone would reduce recurrence by approx 10% & cmf 6 - 7%. examined me left for a few minutes asked if I made a decision. Gave me to nurse for education . Scheduled for 2-1/2 weeks for onco results w chemo " that I can cancel if I decide not to go that route - better to have it scheduled" I know there are grey areas of oncotype , etc. it just felt very weird to me. Is it because Sloan is so big.? Is it because it seems like such a huge decision and I'm overwhelmed? Anyone with similar situation or wise ( kind) words. This community has made such an impact on me - thanx

lisa2012

Wow,Brooklyn mom, I so get what you are facing and thinking about. I went through the same oncotype experience. And i am in Santa Cruz, small city, not NYC.

Quick summary: got. Last summer gitvBRCA tested because my sister and two cousins were positive. I was positive too. I had a preventative oopharectomy in Nov. Then I had the first "screening" MRI in Dec. Found something. Biopsy showed a small cancer. Had a double mastectomy in Feb. I had thought that if I had the BMX and neg nodes I would prob not need chemo...



my doc had me do the Oncotype test and the same thing happened!!! After 2 weeks ( waiting to see if I should think about chemo) they said they had to do it again!! Said it didn't pass all their quality control tests. So they sent for a bit of the tumor to do it again. Another 10 days go by. It comes back as a 38- but it says I am estrogen negative - completely opposite of what my doctors slides said. The test is for ER positive. Why was there a discrepancy? Was the 38 valid?

Long story short, I DID do chemo ( just finished four rounds of taxotere/cytoxan) because my tumor was grade 3 , K167 was 43, BRCA pos, etc. so the oncotype SORT of confirmed the high risk business, but it took 4 weeks and added a bit of confusion about hormone status. I ended up thinking that I made my treatment decision despite the oncotype.

Think about what all your other stats are. I guess i'm glad that I did the chemo risk-wise, though it was not fun and took a lot of energy and time. I still have to have expander/implant surgery and figure out hormonal stuff. Hang in there, know that you are not alone.

Anonymous

Good morning all. Thanks for your notes to me yesterday. Feeling much better this morning and excited to squeeze my boys when they wake up!

Brooklynmom - I wish I had some info to share with you, but I am way too much of a newbie at this. I'm at the Commack facility of Memorial, but will be in the City for my surgery next month. So far I've liked all the docs/nurses I've met at Commack, but haven't met my oncologist yet. If I find one I like - I'll let you know!

Tazzy - enjoy your Canada Day festivities. Hope you feel well enough to enjoy!

And to the rest of you - wishing you an enjoyable weekend and hope you're feeling well.

lostinmo

ramols- your boys are adorable! Glad your feeling better today.

 Brooklynmom-wish I could help you but I wasn't given any choices.

Hope everyone has a good weekend. It's too hot here to enjoy anything so I will be hiding indoors. 

jpmomof3

Hi brooklynmom, I wasn't given a choice either, it was chemo and rads no matter what surgery I chose. But all I can say is that your oncologist obviously didn't have a strong preference one way or the other or she would have said so. You are at a big center and no doubt they talked about your case at tumor board so they had lots of really smart people discussing you. It wasn't very reasonable of her to think you could make that decision in a few minutes though. It's very personal at this point. I wish there was an easy way to make the decision. I would recommend getting a second opinion, it can really help sometimes. The on type might help if it is pally high or really low but otherwise it is just going to be your choice yay the sounds of it. I can't explain those confusing results on the hormone receptors though.



Ramos, glad you are feeling better, and I keep forgetting to say how adorable your Bo us are!



Off to work I go! I am post final chemo day five and the steroids effects are gone. Starting to feel better!

jpmomof3

Sorry about typos that sentence was supposed to read: the oncotype may help if it is really low or really high... Damn autocorrect and fumble fingers!

Anonymous

Brooklyn Mom,

I was givne a choice of post lumpectomy chemo and just radiaiton but was strongly urged to do chemo.  beign risk verse i did  it.  i also felt that i had selected my docs well, did research and chose: NYPresbyterian/Columbia and so consulted with my sister who is a doc and went with their counsel.  I hoep that this is somewhat helpful.  I want to do everything i can now to ward off recurrence.

VVH  

lisa2012

Jpmom- congrats on being day 5 PFC!! Hope you feel SEs waning. Any next steps?

I am day 11 and yesterday had my first day of feeling like I was returning to normal life somewhat. Each day further will feel great. ( barring surprises of course)

Long haul....

jpmomof3

I still have my lumpectomy and sentinel nodes dissection coming in 3 weeks and radiation to look forward to.  This is a really long haul, but I am glad to have the chemo behind me, I think that is the hardest part, at least i hope...  The side effects are fading fast.  I am just happy i dont have to go to the big girl chair for the first time in 20 weeks this monday.

RoulaG

Jpmom - yes I can tell you that chemo is definitely the hardest part of treatment. I had two lumpectomies, the second to get a clearer margin (they found one DCIS cell too close to the clean margin). I also had a sentinel node biopsy as well as two more lymph nodes removed. I believe from the surgeries the node removal was the most uncomfortable for me, but nothing as bad as chemo.



Good luck to you - the worst is definitely over.

jpmomof3

Hi Roula, thanks for the info, its encouraging to hear that.  I worked the whole time through chemo and certainly hope to do so through rads. 

lisa2012

I had a double mast with 3sentinel nodes on each side. getting mobility back took a while, it's a 5-6 week recovery . Chemo was harder for sure!!

FightingLikeAGirl

Hello...Just found this forum...been hanging with the May/June/July chemo gals...I see a few familiar names on here.  I am in the middle of chemo and my last one will be in the middle of August.  I'm hoping to be recovered enough to have my BMX sometime in September.  I was just wondering if anyone else did chemo before their mastectomy.  If so, how long does it take until you recovered enough from chemo to do the surgery.

jazlaumir

Hello Sisters!

Just trying to get caught up again, but unfortunately had some drama along the way unfortunately coinciding with my attempt to recover and rest from the surgeries a few days ago. 

So in short, my actually surgeries have gone well, but unfortunately, long story short, I had a Mirena IUD removed about a month ago that was originally inserted to stop heavy menstrual bleeding that was causing low blood counts(anemia).  Well as a result of the cancer that is estrogen positive, this months (period?) which started on the 20th of June has come back with a fury and hasn't stoppped.  I'm on my tenth day of bleeding so yesterday I had to go back to the hospital for a pelvic ultrasound and they are trying to watch my blood count from dropping because they can't give me anything hormonal to stop the bleeding. So my side effects of the bleeding is what has really been troublesome in recovering from surgery as I have felt light headed and dizzy and constantly changing my pads every few minutes so I haven't been able to can't simply rest and recover.

The bleeding slowed down a bit ago and I'm hoping that it is going to stop otherwise, its back to the hospital but I do think its slowing down this time; hard to say after 10 days. I can hope, please cross your fingers for me

Anyone else experience anything like this after an IUD removal?

jazlaumir

Oh but I forgot to add the very good news is my final path reports came back clean this time!

Soyaandpepper

jazlaumir-Sorry about your heavy period due to removal of IUD, I don't know about that but hope that it'll stop very soon. Hoping that you will have an eventless recovery from here on and yayyyy to your clean report!

jazlaumir

Thank you Soyaandpepper!

jpmomof3: I have an appointment with my MO on Monday the 9th to start scheduling my chemo treatments, I also need to work during this treatment, any suggestions?

Tazzy: I hope you were able to enjoy your activities today!

Welcome fightinglikegirl! I haven't gotten to chemo yet but I'm sure someone here will help you. 

Ramols: glad you're feeling better!

Lisa2012: Thank you as well for the well wishes>

I hope I haven't forgotten anyone, you all have been so supportive. Forgive me if I have!

lostinmo

FightinglikeAGirl-I finish chemo this coming Friday. My MO told it would be 3-4 weeks after I'm done, then the surgery.

jazlaumir-congrats on the clean path reports, but sorry about the heavy bleeding. I hope that it stops and you don't have to go back to the hospital.

I hope everyone is cooling down now, we got up to 110 again today. 

jazlaumir

Thanks lostinmo! Any advice on getting thru chemo? I have my appt on the 9th? I know it depends on which chemo treatment, but anything I should ask about?

Anonymous

Many thanks to those who commented on my little cuties!

jazlaumir - so sorry to hear about your bleeding; fingers crossed for you! And congrats on the clean path reports!

jpmom - so glad to hear you are feeling the side effects start to wane and that you are done. Like jazlaumir - I'm curious to hear about how you made it through working while on chemo - because that is my plan too, once I actually get to that point. I think early August will be my chemo start.

To those of you with questions, I wish I had answers to offer - but you are my source of information since I'm still so new to this. And to the few new names I saw today - welcome. I've been hanging out here for a week or so and don't know how I got through the first few weeks of my diagnosis without the strong ladies here!

And finally - I wanted to share that I chopped my hair off today. While I know it will be some time until I lose it, I figured I won't want to deal with managing long hair after surgery, forget dealing with long hair when it starts to fall out. It kind of brings the reality of whats to come in the next many months into clearer focus, but it is liberating at the same time. Hope you all had a wonderful day and manage to get some good rest tonight.

LuvMyFam

Hi everyone.  It's so great to see all the support here!

I am 38 years old, and found two lumps in March of this year.  Went to the doctor, had a mammogram, ultrasound guided biopsy and CT scan.  I have one tumor that is ER+/PR+ Her- and one that is ER-/PR- HER2+.  Weird.  Since I didn't have insurance, I had no treatment.  My insurance just came through so I had an MRI and another ultrasound Thursday.  I go see my local oncologist Monday, but am in the process of becoming a patient at MD Anderson, in Houston.

Everyone here is so strong, I look forward to sharing stories with all of you throughout everyone's treatment!

jazlaumir

Welcome LuvMyFam, it's good to hear that your insurance came through, wow, that had to be stressful as well. Sorry to hear about your results so far though most importantly, we're definitely here to listen and provide support!

juneaubugg

Dear All,



Sorry it's been a few days. Got home from the hospital yesterday following my right NSPMX. U have to admit; I'm surprised by how good it looks with the TE. it hurts a lot and and have lost all sensation around the breast AND the underside of thar upper arm. But at least the worst is over. Now I wait for the oncotype next week and I should be finally done making these gut wrenching decisions!

jazlaumir

thank you Ramols! Wow and congrats on cutting your hair! 

Juneauubugg: Congrats on getting out of the hospital with a successful surgery! I hope the pain eases quickly for you !

websister

Hi everyone

Home today after yesterday's total right mx and axillary lymph node dissection. Right arm is causing the most pain but bearable. Thanks to all for your support. Won't spend too much time online but good to be on this side of the surgery.

tazzy - also celebrating Canada day weekend, nice to have my husband available for a three day weekend.

Jazlaumir - congrats on clean results. Back a while ago when I had heavy bleeding they put me on a med called tranexamic acid (not a hormone). Hope things settle down for you soon.

Sorry not to spend longer but wishing all a good weekend.

MaddyMac

Hi my dear everyones. I read, but have to keep my response general/minimal. Am finally home from what was meant to be an outpatient lumpectomy - oopsie! My surgeon nicked an artery and I had to hang around being transfused and observed for awhile.



My path report came back with 4 positive nodes, and will ask doc when I see her Monday, but does anyone know if this constitutes metastaic cancer? Thanks.



Welcome welcome new folks.

jpmomof3

Hi guys! Lots of activity since I checked in last.



Maddymac, sorry to hear your nodes were positive. It only means it is metastatic to the nodes, the nodes are our defense system. They are filtering the lymph fluid from the breast and are stopping the cancer there. They can only work for so long though and when the nodes get overwhelmed then it metastasizes anywhere and everywhere it can because it gets into the bloodstream from there. You do not have metastatic cancer if it is just in the nodes. The PET scan is what they use to look for metastatic cancer. If you had a clear PET scan, no worries about metastatic cancer.



Websister and jaz and juneau congrats on being done with surgery! Jaz sorry about the bleeding but super awesome in the clear path. I had that same kind of IUD removed in February but I never had bleeding problems. In fact I appear to be in chemopause. I haven't had a period since starting chemo. Hope that bleeding calms down, who needs that with everything else.



Ramols glad you took the plunge with the hair. I remember getting annoyed at my heir every time it was messy or got in my face once I knew it was going to go, I just wanted it gone. It's a step that you controlled and will hopefully help you get used to what is to come in your mind.



Luvmyfam, welcome to the group, sorry to hear that you are in the group though. Glad that your insurance situation is improving. I think it is horrible that you even had to wait a few months with that hanging over you. Best wishes.



Welcome fightinglikeagirl, I did chemo first. Just finished last Monday. My surgery is scheduled for July 23. It seems like four weeks after chemo is when they try to do the surgery most often. Best wishes!



I worked the whole way through chemo. I did A/C dose dense four treatments every two weeks first. That was definitely the roughest part. It wasn't all that bad the first round. After that the nausea and fatigue got worse each time. I usually felt ok the first day after the treatment. The three days after that the nausea and fatigue were more of a problem. I tried to get my schedule arranged such that I was working less or off those days. I got people to take the last few hours of my longer shifts. The second week after the infusion wasn't nearly as bad. I found that staying busy really helped my fatigue and my attitude. I just took it easier.



Working really wasn't a problem during the taxol. I had no nausea and the fatigue was much less prominent. I didn't have to adjust my schedule much at all for the taxol.



I had arranged with my employer to reduce my hours to the minimum before my benefits changed which for me was 30 hours per week. I most often worked more but at least if I had a short week they didn't take my leave time.



So for those about to start chemo and want to work through it I think it is entirely possible and I think even helped me stay sane. You will quickly notice a pattern with the treatments whatever type of chemo you get. Try to arrange your schedules so that you work as little as possible on the bad days. I have found my employers and co workers very cooperative and understanding. I was lucky enough to work in the same building I get my chemo so I just had to run upstairs and get plugged into the big girl chair after my shift. I certainly wasn't as efficient and I got very tired around 3 O'Clock each afternoon the first 3-4 days after a treatment but it was doable.



Good luck ladies, if I can do it any of you can. You will be amazed at what you can do if you just do it.

jpmomof3

Oh and don't let them tell you you can't work, until you try. they tried to tell me i shouldnt work and I didn't listen. I work in a walk in medical clinic, lots of viruses they didn't want me around. I just avoided certain patients and protected myself. Knock on wood I never even caught a cold the whole time I was on chemo. So you can do it! We are strong.

Tazzy

Why DH is on skype to his parents in the UK I thought I'd pop in and see how everyone was doing.   
I don't think I have a chance of catching up though, but will try my best.  

Ramols... glad you got to hug your boys and are feeling better.  Canada Day festivities are in full swing - will go down to see what's going on for a couple of hours today.   That's all I can manage before needing a nap/rest.   Good for you chopping off your hair.  Puts you back in control.

Brooklynmom, I had neo-adjuvant chemo, my surgery is going to be around 1^st week August, then after that 6 weeks rads.   Agree with jpmom.... Working during chemo is possible if you have job who can work with your schedule.  I have not worked, through choice, but also I do not have the kind of job where I can do a day here or a few hours there. 

Jpmom/lisa... glad you are feeling better... me to.  I love being PFC.   Each day we grow stronger and it feels good.

Roula - I agree, thanks for the encouraging news.  Everyone has said to me that chemo is the hardest part of this journey.

Hi Fightinglikeagirl.  Glad you stumbled across us.  Great bunch of women here with wonderful advice and support.  Yep, I did chemo first.   My BS said recovery should be 4-6 weeks from chemo to surgery.

Jaz.... So sorry about your added problem of heavy periods.   I had the Mirena IUD also, was removed before I started chemo.   I'm at that age though where likely already gone through menopause or chemopause.    IUD was removed in Jan and I am grateful that not had a period since.   Like you are not going through enough anyway.  Yay on the path reports - great news.   Do you know what chemo protocol you'll be having?   My biggest piece of advice is hydrate, hydrate, hydrate and when you think can you drink no more water, hydrate again.

Lostinmo... please send some heat this way - sounds like you have enough to share.   Going to be high 70's today here, but with showers.

Juneaubug....happy you are home and pleased with your surgery.  

Websister... happy you are home too and Happy Canada Day.

Maddymac... happy you are home finally..... sorry to hear about the nicked artery - ouch.

If I have missed anyone I am really sorry, but thinking of you all, sending positive healing vibes and good thoughts. 

Moonflwr912

Juneaubug, Madymac, websister, glad you are back from surgery and doing better. Rough times you all had. Jazz, happy for clean results. Welcome to all the newbies, sorry you have to be here. To all, much love. Enjoy the holiday and weekend.