Just confirm it's back ...Merry Christmas

7of9

Well, thank God I got enough Attivan to get me through a day with my mother in law to top off this rosy news. I am so MADDDD. I just saw my oncologist in September (with his laid back - no test follow up routine) and pointed out my left arm pit seems fatter. Nothiing palpable, it's fine. I called complained to my nurse and she got me an ultrasound...which led to biopsy. Which led to the phone call I got in the grocery store one hour ago. Now the store being out of Brownberry Crouton stuffing mix doesn't seem like quite the big issue.... My wonderful surgeon's office is still up and running despite the holiday week - I see her next Weds at 10:45 and then here come the tests to see how far this went. I had a double mastectomy and neoadjunct chemo last time with clear margins and no nodes. This is bullshit. My son is 6 1/2 (sorry, that was a low blow to add as if I weren't trolling for sympathy already....). You guys are the only ones who know. Husband, mom, everyone is being lied to that I don't get results to next week. Fuck you cancer. You can't have our Christmas.

Moderators

7of9, we're so, so sorry for you to hear this news, especially right before Christmas. Please try and enjoy your holiday and know that you'll have some more answers soon and you can face this diagnosis head-on once you have all the information.

We are thinking of you and glad you came here to confide.

((((Big Hugs))))

--The Mods

rleepac

So sorry

Cancer sucks! I think I would also want to refrain from telling my family until after Christmas but I probably wouldn't be able to not tell them. They can read me like a book. Hang in there and use the Ativan if you need it

tangandchris

I'm angry for you!!!! I'd be popping the Ativan too....and I'm not sure that I could hold that in and be in the same room with dh. I understand the desire to not say anything, but it would be hard to not at least tell dh ((hugs)) girl I'm sorry, Cancer is such a bitch I swear.

TwoHobbies

7 I know exactly how you feel right now. Anger is maybe a good mood to get you through a few days. I had a local recurrence 2.5 years ago. Double mastectomy. Low oncotype. Took my tamoxifen every day. I even lost 13 pounds to get my BMI more towards the middle range. What did I get for that-cancer. Not fair and I was pissed too. Yes try to let Christmas distract you. I hope it will be encouraging to you that I'm doing well, but of course I feel like I need to say "knock on wood". we may not be lucky but we are strong.

DivineMrsM

7of9, sorry for what you're going through at this time of year. I remember finding the lump in 2010on December 22, six days after my annual mammo, and knowing it was not good. my heart was in my throat most of the holidays while I waited for further testing. I did tell my husband and sister at the time. But I agree with you. Don't let effing cancer steal your Christmas. Stay as focused as you can on the festivities. I have a somewhat complicated relationship with my mother in law too, so I kinda know how that goes as well. Hang in there.

Tresjoli2

i admire you. I have an 8 and 3 year old. I would hold it in and not tell too. I'm so glad you have us. Cancer sucks. I am so so sorry this hapoened, and so happy you stood your ground and got an ultrasound. Hugs....

Nan54

Oh, this is such crap! I hated reading this and I am so sorry that you are dealing with this again. It's beyond unfair. Thank goodness you were an advocate for yourself and found it early. My thoughts and prayers are with you - I hope that you can somehow push this crap out of your mind for a few days and enjoy the holidays with your little one. Take that Ativan and keep us posted...

KBeee

I am so sorry you are dealing with this again. Be sure to allow yourself some alone time over Christmas so you can get your emotions out. (((Hugs))). One day at a time. One moment at a time. The next few months may creep by, but you CAN do this. I hated having to do it twice, but I did go in better prepared. It is harder mentally, but was easier physically because I knew what to expect and could cope more easily...and I could not have done it without the amazing support of my BCO gals (and guys) here. Please keep us posted. PM anytime

AmyQ

Yep - crappy time of year to hear this news. I'm very sorry and especially since your son is so young. Fear and anger are absolutely normal reactions. Just know that we're here for you.

Vent away -

Amy

vfh123

It is hard to say anything, I know how are you feeling. I have had the same situation 2 months ago.

I hope that all scans will be ok and that you will beat it once again. I am sure that you would.

I was totaly lost at the beggining, I didnt even eat, I started smoking again, I didnt see way out from there. I changed onkologist and when the treatment started I felt much better. I am hoping for the best now. It has to be better!

Nel138281

There is no good time of year - but the holidays really suck! Hope you are able to enjoy the moments, taking on the whole day or days may be overwhelming. Just grab those moments!

Once you see your onc and have a plan, the anxiety will lessen, not that it will be easier, but you will find a place to live with it.

I did not share my stage 4 dx, with my kids until a year after I received it. They were 15 and 20. They had been thru so much, my initial cancer dx, their dad had health issues, divorce - I just decided not to tell them and did not tell too many others either. I was in treatment, but not losing my hair, still able to continue a pretty typical life. 2 years out, they know and I am now more open with others. Didn't want or need others pity. You will figure out how to manage this for yourself.

Check out there is life after stage 4 , many of us living full and long lives.

Be well

7of9

wow Nel.... A year! With all the advances and hopefully longevity we all have left in us, I have decided not to tell my 69 year old mother anything beyond stage 3...she is not in great health plus just moving past the loss of my father at the time of my original diagnosis. She finally seems happy.

I had a wonderful heart to heart talk with my husband and while scared of the upcoming scans, so relieved that my kick ass surgeon, Christmas or not, lined up all my appointments scans and follow up appointment with her for this upcoming week. It's like I sent out a distress signal and the army is lined up, geared up and fact gathering for their counter assault. The only one on the chopping block is probably my onc who pretty much ignored my concern in September at my six month exam that I moved up a month due to my arm pit looking a little swollen. He said he'd go over me well along with the fellow resident he had with. Thank God my nurse who I called a few weeks later said you know what, let's set up an ultrasound and check it out anyway (scheduling was a nightmare but at least I m on this 2 1/2 more months before my net routine check up.

Thanks to attivan and the excellent response of my surgeon and general practitioner and their nurses, I at least feel good about what we are doing now.

Oh and I am meeting with my possible new oncologist Monday 9 am with my husband to vet the new guy out.

Gearing up to grab the bull by the horns (again). No mercy this time!

KBeee

7of9, I dumped my prior oncologist too, who completely dismissed a new lump, telling me "I was not at risk for recurrence...to call him if it went form a grape to a golfball." I never saw him after that; drove pretty far for routine appointments, but when I had the recurrence, I went with a different local oncologist in the practice (who I could not get into last time). It is clearly written in my record that I am to never see the other one, because I told them if I ever saw him I would remind him what he told me and tell him very clearly what I thought of him...and I told them that their walls are thin so people in nearby rooms would hear. It has not been an issue and I love my new MO. He is fabulous. Keep us posted.

7of9

Looks like I have a new Onc! Waiting to run by my surgeon who I am very confident is kick butt first rate. New Onc says that the first guy did everything right....right up until I complained/pointed out the unevenness - back in September. What was blown off as armpit fat/changes due to scar tissue blah blah blah... see you in another six months. That should have immediately called for scans and tests. He says whether I'm in menopause or not (period skips 6 - 12 months at a time) he said since the Tamoxifin has obviously failed either leaving a before unknown node to grow or regrow, it's time to put me into menopause once and for all, shut off the main estrogen source and either chemically zap or my preference, remove the ovaries. This is all dependent upon the ER status of the cancer results. So far we know it's IDC again but that it so far. What really gave me hope with this guy is that whether or not I'm stage 4, he said if it's ER + that the ovaries should come out and Arimidix should have a good chance shutting down all progression. Hopefully the surgeon gets to go and just clean up the local recurrence. Then we have to decide if we are doing the ooph at the same time or stop for radiation and go back and yank those suckers later. He said we can't leave any stone unturned though and needs the oncotype to determine if I have hair or not this summer (bummer) but he's 30 minutes closer than the other genius so this could be the start of a wonderful friendship. He was honest and told me also that ER + patients never outrun their recurrence odds - that we will keep a lifetime 20% risk so monitoring will be for life. If it's a long one...I'm ok with that. Thanks for listening and Kbee....you really did have a hand in getting my butt off the wheepy chair and swinging into action. Stay real my friend. Stay gold.

KBeee

I am glad you have a new MO you can trust. My new MO is SOOOOOO much better this time around and it makes all the difference in the world! When I had a re-excision after my excisional biopsy came back positive, I told them I wanted a 3 fro 1 deal...re-excision, nodes, and ovaries done all at once. At first he thought I was kidding, and I told him that I did not want to finish chemo and rads and have to jump right back into surgery. I wanted 1 recovery. He realized I was serious, and made it happen. I am so glad I did, because 2 weeks after finishing rads, I was able to start on an AI. Hoping you get all favorable news from scans and that you have a plan in place soon so you can move forward. Squandering in the abyss of the unknown is truly the worst part. (((HUGS)))

7of9

Thanks for the tough talk pep talk. I meet with my surgeon tomorrow for a brief 15 min consult before scan day (new years eve). I want her to know out of the shoot that I have stuff in me that doesnt react well to estrogen, Tamoxifin flopped, I'm 44 and done with kids (I was done when this crap started first time at 40) but either they really believed keeping your ovaries when you are not BRCA positive was better for your heart or what....I wanted them out then and they said no. Now I have an ONC who says they gotta be shut down or removed - I want this done. She agreed when I pushed for the double mastectomy (right sight was clear but dense also and a 20% lifetime risk last time) so I don't think she'll balk at another double header of node(s) and ovaries. If she does, I will just politely ask her for the name of another surgeon who she think will do it.

KBeee

7of9, That's pretty much what I did. They also told me it was going to be 5 weeks until they could do the surgery. I told them thanks, but no thanks, I'd go where I already' had another consult. Magically they found a date the next week. It's sad you have to play hardball, but I learned the hard way you have to be your own advocate. I hope the meeting with the surgeon goes well

KBeee

I do have to say that when I first asked him to do the ovaries, he said he'd find a gyn to do it. I told him if he could not find one, that I trust as part of his surgical training, he took out plenty, and mine were in the same place as everyone else's. I told him I trusted him to do it. He had a Gyn surgeon lead, but he told me they just tag teamed it, and it was quick and easy

TarheelMichelle

I'm so sorry. I got my Stage IV diagnosis on Dec. 20 4 years ago. Had just gotten married. Was in intense pain. It's not fair and I just don't understand how recurrence happens when someone does as much as you did to prevent its return.

Here's a thought -- as you see, from the comments, you were not alone in thinking a double MX and clear margins and no nodes meant sunny skies. There are plenty of other women who had their ovaries out at the same time, and the cancer still came back. It's not as simple as removing the ovaries. If it were, then none of those ovary-free cancer survivors would have a recurrence. And my estrogen-positive cancer would have shut down when I hit menopause, right?

There are many ways to battle the beast, hitting it smarter, not harder, is key.

Peace.

7of9

just had great meeting with surgeon, lymph nodes out Jan 19 and if she can get a gyn same day by by Ovaries.... Radiation city two weeks after and AI here I come. Have the dreaded big tests tomorrow for bone and CT but if all clear... Should be no chemo!!!!!!

tangandchris

Great news!! Hoping now chemo for you ((hugs))

KBeee

Great news! I do hope you can avoid chemo. I did have them run my oncotype with my recurrence. They were not sure if insurance would cover it, but it did! I am glad you have a plan in place!

marijen

So 70f9, for what it's worth.... on Monday I asked my surgeon if I had a lot of extra estrogen in my body and he said sometimes it doesn't matter because the cancer gets to a point where it can thrive without the estrogen so cutting it off by the receptors or the production (ovaries) doesn't always matter. I was surprised to hear that but then cancer does mutate. Don't know what you can do with this piece of information, maybe ask you doc about it?

7of9

Marijin, thanks for reaffirming I have to really weigh this one.... I am getting second opinion Tuesday though my biopsy came back with 95%ER positive again... First oncologist said even though I am probably in Menopause that they need to put me there for sure and Id rather do the ooph as opposed to the quarterly injections. I have ulcerative colitis for which I take a maintenance drug daily for the rest of my life... Plus ambien, plus tamoxifen plus who knows what the hell else so out they go along with zero worries about ovarian cancer too. I don't want to hold up my surgery or radiation of course so that is my only concern with doing double. I still want to be done with this round of crap before spring.... I Want to do my yard work and I love biking and boating!!!

TwoHobbies

7 I think you said you failed tamoxifen. So yes they will shut down your ovaries or take them out so you can go on the AI. That part is standard procedure since there's no other pre menopausal ainti hormonal available. It's only a question of whether to do chemo or not. What marijen is speaking of is the bodies ability to convert other hormones to estrogen, and that's what the aronatase inhibitor prevents

I'm glad you found an oncologist you like. This is a long term relationship so that's important. Sorry you have UC too. My son has crohns so I know what a challenge it can be.

Crossing my fingers for good scan results.

BethL

so sorry you're having to deal with cancer again. I'm on round 2 as well. I was reading the posts and have a question about oopherectomy vs medical suppression. I'm currently waiting for genetic results. My MO said that if nothing came up in the tests linking me to ovarian ca, then I would get the injections to shut them down. Is it better to just get them out? I'm 49, pre menapausal. If they medically suppress them, what happens after the 5 years on the AI? Is that a risk in itself to have the ovaries start pumping out estrogen again ? I don't need them, can't I just opt to have them removed no matter what the tests show? Is there an issue with just taking them out? (Other than the risks of another surgery)

TwoHobbies

BethL I don't fully know the answer to your question. My obgyn said why don''t I just have out my ovaries, then she said maybe see how you tolerate the o/s for a few months and then have them out. My MO said it was not necessary to remove my ovaries. I was pretty sick of surgeries, so I went with that. I did research if there is an advantage to one of the other, and it appears not. Most women your age would be approaching menopause, so I think they believe you won't need the o/s for long. I think my MO had thought about a year but I've been on two years and still my fsh test shows no sign of menopause so I continue on. I was 52 when I started on the o/s.

Ruru99

Wow, things seem to be happening quickly for you. I got news on Christmas Eve that there was 'a' cancer in a swollen lymph node right above my clavicle on the same side as my previous cancer. I have been trying to get an answer since September! A multitude of tests and biopsies later and that's all I have. It is just a guess that it is a recurrence. A CT scan of the lungs in October didn't show any lung mets.

I wish I could get to see an oncologist that fast. I have been referred to the same centre where I had my first cancer treated, but haven't heard from them yet. I am crossing my fingers that I can see someone quickly and this is just the holidays that is the problem.

Nice to hear that there is life after a second diagnosis. My head was going in some dark places.

BethL

I guess I'm thinking if you supress ovarian function, you may just be prolonging menapause. Does it not just put it off for 5 years? For instance, if say I would have gone into menapausal at age 51 (in 2 yrs), but I'm on os until im 54, will that mean I'm back in the premenapausal game for 2 more years after that? I know that sounds confusing, cause it is. I still kinda want the things out. My recent tests show I'm not that close to menapause, which I suspected since my periods are every 26 days, around noon!

I certainly could be way off, that's just how I was thinking it may work. 2 cancers-both er+.....just worried.

7of9

To Kbee my hero and friend.... Met with brilliant GYN surgeon that confirmed with an ultrasound right there in her office... Ovaries are a coming out two weeks from tomorrow! She said that even though our Ovaries may not be making enough estrogen to ovulate... They often spurt out tiny amounts of estrogen well into our 50s. Mine were still working! . She said that it's a positive blessing that I again have ER 95% cancer because we can slam the door on its foodsource as the tamoxifen just couldn't block it all. Oh I also found our I have fibroids and she will do a dnc in the uterus to check it out thoroughly..... Double header surgery armpit nodes and Ovaries set up. Thank you my friend and for the encouragement... God bless every one if the womem on this board