Sending good thoughts your way, Zeetera. I had 2 sisters with BC and I know how scary it can be. Stay strong.

Zeetera, you are in my thoughts and prayers

Zeetera, my sister had a very large mass and 18 of the 22 lymph nodes were positive. She went to Tuft's Medical and had Dr. Smith and he saved her life. It's been 16 years now. Keep the faith and hope that you will have a successful outcome. God bless.

That's comforting to know yayagal. Funny how all of you can say the right things, yet the few people I've told manage to irritate me with what they say.

Right now I'm paying for all my sins. Plus those of my relatives and ancestors. Both sides. LOL.

If I gave you an update the rest of this message would be empty. It's like, hurry up and wait.

Took chest X-Ray and blood test last week but never heard from the surgeon's office. Called Thursday and the receptionist said to call Friday at 10:30am to talk to the doctor. Called then and the doctor did not speak to me, instead she came back on the line and told me to come in on Monday (tomorrow). I said, that's it?? No updates and you're letting me go the whole weekend without knowing anything? She just went quiet. So here it is another anxious filled weekend. Tomorrow will make it seven weeks since the doctor discovered the first lump.

Some things are just not adding up. Not sure how to put it but the odds are definitely not in my favour for so many things. Everything I read about my case says, "Only 1.54% will have this... Only 10% will experience this... This occurs in only 5% of cases..." I could have won the lottery in 10 different states by now.

The 2nd mass is extremely painful and I'm beginning to wonder if I have 2 different types of cancer in one breast. One board had two women talking about the type of widespread cells that was on my pathology report and one said that it's highly unusual to find this type in the breast. It sounds like it's the type of cells that come from another part of the body, and is extremely dangerous. Another lottery ticket. I'm wondering if this is the cause of the second mass, which to mean seems to be the size of a large egg (I'm only a B/C cup). IBC comes to mind but I can't feel how deep it goes or if it's defined due to tenderness. The surgeon never mentioned the cells probably because he had no paperwork at all during my entire examination. But he did say it's been in me a long time. He's probably going to hit me with everything tomorrow. Joy of joys.

The doctor's office discouraged me from going abroad because the doctors here may not treat me when I return if someone else has arranged my chemo/radiation. Plus she said that they will request the test results from here, and that's where the doubt lies. So many people have warned me that there have been a lot of misdiagnoses from our one lab. Seems believable because when I asked the surgeon what the term Grade 2 on my report meant, he said that the lab puts that on all the reports. I refuse to believe though that they will get cancer cells wrong, the type maybe.

The only positive things that give me hope is that the other breast is not affected and the lymph nodes are not swollen. 65% of the time this means that the cancer hasn't spread. But from my history of odds, I'll be in the 35% group, lol.

So now I'm waiting to hear from the insurance company and Dana Farber is due to get back to me. I'll still see what the surgeon says tomorrow but will continue with the arrangements to travel.

Sorry that I can't stick around here but it's work til late then up at the crack of dawn to work again. I hope one day this thread can help someone else who's in a similar predicament.

Oh, Zeetera, I'm so sorry you're having to go through all this--you must feel like Job. Do you have any other medical office you can go to since it sounds like the one you're dealing with is awfully slow off the mark? Have you considered a second opinion (locally?) even though you don't really have your first opinion yet? I keep praying for you, girl.

I'm sorry you're having to go thru all this. My thoughts are with you .

If Dana Farber says yes, don't hesitate a moment. Have heard nothing but high praise about them. Sorry for your worries and your crummy doctor.

What a beautiful thought...."I hope some day this thread can help someone else in the same predicament". With all you're going through still worrying about someone else. I'm sure that some day it will do exactly that. We all tuck away little bits of info and call on it when we need it. (((((Zeetera))))).

Praying that your insurance comes through.. If I lived over there you would have a place to stay and rides to wherever.
hang in there kiddo.

hugs
kat

I hope you got to see your doctor today, Zee, and I hope you got some good news or at least more info on your upcoming treatments. It sounds so overwhelming, but I'm sure you're taking this one day at a time and that you'll get thru this.

Ditto to what Kat just said.... wish I could help.

(((((Zee)))))

Sending you continuing good thoughts.

There is always hope. My 73 year old sister is a 23 year survivor of IBC - from the time when there was no survival rate. One day at a time. That being said I can't imagine the thoughts that go through your head at a time like this. Breast cancer has touched so many women in my family. I feel lucky for now, but the bulls eye is always there.

Anne

I'm glad you're looking at going to Dana Farber. I know it's hard but try not to get too caught up in the statistics. When I was first diagnosed with cancer (not BC) I had less than a 20% chance of surviving five years. That was 40 years ago. Seeking out the best possible expert care available to you can make a huge difference.

Don't have much to say except that I'm here if you want to talk, or scream, or curse, or ... well, no hitting. My doctor says that if they are taking their time deciding what to do, that either means it isn't too dangerous, or it's very bad. I'm praying for the "isn't too dangerous."

WOW! Congratulations Gibby! Cherryfizz's sister will never know how big an inspiration she was to me when I developed IBC 12 years ago. Cherryfizz told me all about her and how well she was doing and it really made a big difference in my outlook. I knew one other long term survivor and they sure gave me hope to carry on. Now I hope that I can return the favour and be an inspiration to someone else.

Any updates Zeetera?

Sorry for bringing this back to the front but I hope it helps someone out there one day.

Another hellish day. I won't tell you what I've been through to get to this stage, but something finally happened today.

They did the diagnostic ultrasound with a doctor this time and he found two more tumours. Together they measure 4cm. So it's those and the original one which measured 1.4cm. I think they call it a multifocal situation. So this afternoon they did two biopsies right after the u/s. Then they did mammograms, which they messed up on, so had to do over so my breast was bleeding again.

As stupid as this sounds, if it's what the doctor said it is, then I'm relieved. He said they all look like IDC. So if the breast is going to go anyway, they can take it all with it. So now it looks like I'll have to prepare myself for chemo, plus be prepared if it's spread to other parts of the body. My blood test and chest X-Ray came back fine but that doesn't mean it hasn't gone to other parts.

The first technician walked into the u/s room this afternoon and the doctor lit into her about missing these lesions. I said, please, not now! Then she started again and he told her to keep quiet because I was upset, lol. So 2 mammograms, 3 ultrasounds and 3 doctors missed these masses. Luckily my surgeon was astute and the doctor doing the u/s today said that.

I'm relieved that it's not the entire 10cm that is hard - I told him to make sure that there's no more in there because he had to go really deep to find these. But he said there were no more. He put some metal markers in there, hence the need for the mammograms.

After reading your stories I feel that my situation is not too bad, although I still have to wait for the 2 new biopsy reports. He listed them as Birads 5, which is fine because I already knew it was cancer in the breast.

I have an appointment with Dana Farber in Massachusetts next week and surprisingly my insurance company approved me to go without the consent of the surgeon. I'll still talk to him to get the results and that way anything that's done at Dana Farber will be a second opinion. Dana Farber still wants all my reports.

I may be back with questions about chemotherapy and radiation. I just want to thank you all from the bottom of my heart for helping me through this. It's the first place I want to run to when there's unnerving news. I sincerely appreciate it.

Zee..you have many here thinking of you. Thank you for the current update.

ML

chemo and radiation are a means to an end! it will be interesting to see what the next evaluation is..one day at a time...

are you still working?

Don't apologize for bringing this back up, or you can start a new thread anytime, Zee. KT'ers care and worry, so we do appreciate your keeping us up to date. I'm glad you are going to Dana Farber. Sending you heartfelt good wishes and hugs hugs hugs.

Susan

ditto everything socks said.

Zeetera, I repeat my offer from earlier. I'm in Boston. Let me know if I can help in ANY way.

Zeetera - I'm glad you posted an update. I've been thinking about you and wondering what has been happening. You're working your way through the process - which is a good thing - even though it's been a terribly frustrating experience so far.

Glad you posted. We're all thinking of you. Please keep us informed.

Thank you so much for posting, Zeetera! I hadn't been at KT much lately, but after reading your original post, I've found myself checking in daily to see how you're doing. Please please please know that we all care very much and we want to support you in any way possible. You're among friends here!

I've been checking daily too, then was away for several days out of town. Funnily enough, I thought this last update sounds rather positive!! Having a blood test and x-ray come back normal are good things and we'll hope for further better tests that tell you it hasn't spread. I'm so glad you get to go to DF soon and that you will have great minds helping you with decisions. Do you think you will have surgery before or after a round of chemo? Forgive me if you've already answered this, but do you have any family/friends to help you? I hope so! Continuing prayers for you, and a great, big hug!!
Erin

thank you for taking the time to update. we all love you and are happy to hear from you. feel free to start a new thread every time!

Zeetera I'm feeling good that you have found some positivity in what you've learned so far. Know that I'm praying for you and please keep us informed. Threads like this can help so many people. You're very brave to put it out there and we appreciate that. Keep yourself safe by surrounding yourself with positive people. Visualize little pacmen eating away all the bad tissue and then let the medical people take over and return you to good health. It will be an ordeal and prayer helps but it's a solitary journey. I love that you let your fear and anxiety out, it's so important. I'm in awe of your composure and willingness to ask for prayer and suggestions, that takes guts. We all care deeply for you. Keep the faith. Sending healing love.

That is so nicely said, yaya! I'm sure all of us would like to sign our names to that.

I hate to keep bringing up this gloomy post but wanted to give a quick update. A lot has happened, none pleasant but I went back to my surgeon yesterday to get the results of the larger tumour.

It's not good when the doctor's office calls to move your appointment up. Not a good sign when you're the first patient. And not good when the doctor starts out, "Now don't get upset..."

He said it's advanced cancer but right now they can only tell that it's in the breast because I haven't done the lymph node biopsies yet. He wants to start on chemo right away to shrink it, then surgery then radiation and chemo again. Monday afternoon I have an appointment at Lahey (they were so much more accomodating than Dana Farber, plus they got me in quicker). If the doctors there say the same thing, then I'll come back here and start the chemo.

My nodes are all sore and swollen under both arms and under my cheek of the affected breast. Hopefully it's from a negative reaction to the last biopsy and the clips that they put in. It must have been infected because it dripped a ton of pus - this after the radiologist went in to take another look at it and pressed me hard. He saw one enlarged node at the top of the breast and took a picture of it. Frightening moment!

I'm near my breaking point because of the dragging out of everything and the worry of spread, but at least I know now what they're going to be dealing with.

Oh, and another huge mass appeared on the top of breast where they did the second biopsy so the area is even bigger. The surgeon is taking this as part of the cancer because the radiologist said that the hardness is the cancer spreading (which I find hard to believe because Tuesday was the biopsy and Friday they did another ultrasound when he stated this). I think the radiologist likes to see the fear in me.

Hopefully Lahey won't find anymore surprises and I can start the chemo next week. Soon word is going to get out and with a treatment plan in place, I can probably cope with people approaching me.

And I hate to add this... they try to push for locals to get positions over foreigners. But gosh, it was mostly the locals that made mistakes and missed things. I'm all for it but make sure that they are fully adept to take on these jobs. Just a mini vent, sorry!

In the meantime I'm fighting a nasty cold. Not such a quick update, lol.

I'm still praying for you! Thank you for your update. Please, GOD - BLESS Zeetera and help her get through this issue.

I agree with kayjones. I pray for your total recovery, and that He bring you peace through each procedure. Do you have someone close to you that you can rely on for comfort and actual help?

Shirley

hang in there..they may let your cold run it's course before starting chemo...everyone's reaction is different..mine, was able to do all my own driving, ect..not to say i didn't sleep alot between...

the nutritionist we saw (group meeting before) encourages healthy eating and was big on veggies...at our center if you can/like they also offer art and yoga...inner soul is as important as physical...

last, the dreaded hair loss...wasn't into wigs, but found wal mart in the purse section has bandanas in all sorts of colors (including the one i wore for halloween!)have to echo kayjones! (((gentle hugs)))

I had my treatment at Lahey and really liked all the people who treated me. I can't even remember the names of the surgeon or the oncologist. The Oncologist was a woman with a heavy accent and I really liked her.

I did the same as susan...bandana's and no wigs. Can't stand wigs and unless they are really good ones, they look wiggy. My hats were just fine and as soon as my hair was half inch long, I didn't even cover my head.

Bruce Campbell was my regular doctor there at Lahey and I had total confidence in him. I think he is in a teaching position now.

I think of you every day and pray that the ordeal is not so over powering that you lose hope. You're an amazing woman and I admire you so much.

Keeping you in my prayers Zeetera. Please continue to keep us updated!

((((HUGS)))) and my thoughts are with you. Sometimes it is easier to "talk" and to vent anonymously to strangers rather than friends and family. You have cyber-family here so vent and talk when you need to. People here listen.

I think of you a lot and wonder how things are. You will be in my thoughts, and I hope things go YOUR way for a change and you will beat this.

((((((Zeetera)))))) you are in my prayers. Thank you
so much for the update. I know it's hard, but I hope it
helps you to come here and get it out.

I hope your mom and sister are more under control.

Hair loss, no big deal. I wore some scarves sometimes.
But most of the time I was au natural! lol I hate hats,
but would wear one only if I was going to be out in
the sun. No hair, no biggie.

I hope someone is going to Lahey with you, if not, please
take a recorder. It will help.

hugs

Sending my prayers and hugs as well.

Sending you a big hug. I am glad they are giving you chemo first to shrink the tumor before the surgery. From your description, it sounds the best route to me.....the route they took with me too. Try not to worry about lymph nodes. Mine involved my nodes and here I am typing a note to you 12 years later. Think of the chemo as your friend and not something to be afraid of. Being bald for a little while is well worth the price for living. I went au naturel a lot of the time...hated the wigs, scarfs and hats. It was only in the winter when I needed something to keep warm that I wore a hat.

I continue to keep you in my prayers.

Tami

I am reading this for the first time and want you to know that I had such wonderful help here when I was going through BC for the second time. The first time was in 1999. I had a lumpectomy and radiation. I didn't have access to this group the first time, but in 2011 when it came back in the second breast and was more invasive, I had the help and prayers of these wonderful women at the KT. I had a masectomy this time, and chemo and radiation. I had many lymph nodes removed so I did get lympadema in my right arm. Like Heather told you, that is not too much to deal with when you have been given treatment that gives you a second chance at being a survior. Please know that you will be in my thoughts and prayers and that you have a large family here that will help you through this.

I will keep you in my prayers! Worry doesn't help you.
Keep as calm as possible and know that God is with you.
Dolly

Sending up prayers for the best possible outcome Zeetera. I found that having a mantra of positive things to say to yourself helped strengthen and clear your mind during stressful times when you couldn't do anything else. Mine consisted of seven things I was grateful for and I would just keep repeating them to myself when anything else would have been terrifying. I hope this makes sense to you, I know it got me through some very difficult times. (((hugs)))

Hugs to you Zeetera.

I've briefly read your responses because I don't want to start wailing in public. I'm on my Blackberry as I've just left Lahey and as usual the news was worse. The tumour is bigger than what I thought.

I'll give more details in about an hour when I get back to the hotel.

zeetera - I just want to add my prayers, thoughts and hugs to everyone elses.

Adding my prayers and healing thoughts to you, too. (((((HUGS)))) too!

Thank you, it helps. And it is easier to talk to strangers about it.

Today I repeated my story 5 times - 1st the nurse, then the radioloist, then the oncologist and the social worker then the doctor.

The radiologist scared me out of my wits! She examined me and then she said the size of the tumour, which I didn't hear. Then she felt my nodes and said they felt fine. But she added that I am going to need a mastectomy asap with a LOT of chemo!

Then the oncologist made me feel a bit better. She examined me and this time I heard loud and clear 7cm which is what the report said. She felt around the nodes but did not say anything. Then had do all sorts of tests such as touch her finger, walk a straight line, etc. She suggested chemo right away and said that she has worked with the team back home and they're very good. She even wrote out what she would do, and said that I would be doing chemo every 2 weeks. 4 times on one medication, and 4 times on another one, plus shots to increase the white blood cells. So I figure it will be 4 months. She said that I would lose my hair which is no big deal because half the hair on my head isn't mine anyway. Lol

Then my mom came in and then the social worker. Thought she was going to check into my mental state but she didn't seem concerned about it after she found out that my insurance company approved everything without the doctor's consent. Was wondering why she kept bringing up insurance.

Then Dr. Karp arrived and he had already talked to the others. He examined me also and dug deep in the node area again, but did not say anything. At this point I didn't want to know so didn't ask. He agreed with the oncologist but said that I would still need the mastectomy after the chemo. I need the pet scan, heart check etc to see if it's spread to any organs.

So I am a stage IIIb or IIIc but if it's in the bones, liver or other places that I'm stage 4 which is considered incurable.

They stage and treat according to the largest tumour and both the oncologist and the doctor measured the hard mass that appeared after the first biopsy. If that's the case then it's worse thana that because they did not measure it with the mass that appeared after the 2nd biopsy, which wasn't on the reports. I had read that others had these masses appear after biopsies and they took almost a year to disappear so I am curious to see if these shrink with chemo.

In the meantime the pain has just about left, but there is a lot of pain under the arm of the opposite breast, which started after the second biopsy when they put the clips in. Now I'm wondering I'm allergic to them. Oh, and the pain subsided right after I landed which tells me I'm under pressure in my country (snork). There are sooooo many people from there out here getting cancer treatments. The limo driver joked that the Staybridge/Sonesta should be changed to our country's name.

So here I am ready to fight and be a pain to everyone, including you. My weight is finally under 150 which is how this whole thing started. Horrible way to do it though. I do feel better since the oncologist gave me a plan that she would do. If I can read it properly it says Adriny..., cytoxan, neulasta, taxol and something else I can't read but I'll use this to compare to what they suggest back home. They did not order any tests to confrm/deny what was done at the lab previously which tells me that they're comfortable with what they saw on the scans.

Those who know me knows the country but I'm reluctant to name it right now because I'm not portraying it in a good light. But my doctor seemed to be spot on, although slow. I called today for him to arrange the appt with the onco but as usual he wasn't in today. Then he has to write a letter, so it's looking like next week before the chemo starts. It seems like I've wasted time coming here but so many people kept warning me about mis-diagnoses back home so now they have it!

The end, lol.

You can do this!

could that first drug be adriamycin?

come and rant and rave and cry and compare hair stories!
I'm sorry that it is bigger than they previously thought.
You are going to get through this, one step at a time.
but YOU have to be on top of that Dr. Office and call
every day if you have to ... to get in.
You must be exhausted. Are you able to sleep?
if not, ask for something to help you.
((((((Zeetera))))))))

Could it be Adriamycin, Fluouracil (5FU) and Cytoxan? Those were my chemos and I had them 3 weeks apart X6 doses. I have heard of some lucky women going from stage 4 to NED (no evidence of disease). My guess is that depends on how well the chemo works on those particular cancer cells. I did not have chemo after surgery and rads but this seems to be the current thinking in some cases. I still am on a drug 12 years later to help prevent a recurrance.

I hope you can get them to put a rush on your chemo now. It is time for you to start losing that hair! ;-)

You are in my thoughts and prayers.