Any Triple Negative People?

Aortus

24242 said:

Not easy Greg
I know it isn't easy to listen to people try to comfort you but that is all they know and at least they try. I on the other hand had friends who only wanted to live in the positive world and wanted to hear nothing of my cancer woe. I even had one of my best friends ask me how I was doing as he always did and most of the time I lied and said "FINE" like most sick people. But this day upon my arrival with parents to my home town after treatments I actually was having a very difficult time since suffering most side effects. When he asked I actually told him the truth and he just put his hand up like "talk to the hand", telling me he didn't want to hear about it. I just told him to never ask me again how I was feeling because I might actually think I could tell my friend the truth. Guess I was wrong.
It is difficult to not to be the one to fix this though that is all you truly want to do. WE all have to understand truly what we have control over and what we do not, often simplifying things for us. I wish I had a partner that appeared to care as much as you, though I know she is doing the best she can.
Your wife doing it her way is her way of keeping control of her body something we loose going through all of this. It isn't easy having our lives hang in the balance, in the hands of doctors. I am so glad that you are there and this is affecting you as much as her since this only shows just how much you care.
Your wife is one lucky woman,
Tara

None of my business, I know, but...
Tara, is your partner reaching out to any support groups, either IRL or online? It may be that she might benefit from posting here: even though I am a caregiver and not a BC survivor, I have always been made to feel welcome. Or, if she would just like to talk (or vent, or whatever) with someone who has Been There, Done That, I would be happy to forward my contact information via private message.

And Greg, best of luck to you both at the onc appointment today. If you ever feel like talking in private, please drop me a private message.

Joe

24242

Aortus said:

None of my business, I know, but...
Tara, is your partner reaching out to any support groups, either IRL or online? It may be that she might benefit from posting here: even though I am a caregiver and not a BC survivor, I have always been made to feel welcome. Or, if she would just like to talk (or vent, or whatever) with someone who has Been There, Done That, I would be happy to forward my contact information via private message.

And Greg, best of luck to you both at the onc appointment today. If you ever feel like talking in private, please drop me a private message.

Joe

She hardly talks to me LOL
She just isn't a talker and does nothing with the computer. Thanks for your suggestions but I must accept things as they are. I know it is hard for her opening new wounds since we lost her mother just as we were getting our lives back together after years of uncovering all the side effects I was suffering with. It was a very rough 7 years after my treatment phase. Then having to be the caregiver to her mother so she could be at home was very hard since her mother was her very best friend and we did everything for and with her. WE actually bought the family home and live here which I thought might be too tough for her but she just couldn't let it go in the end I think hanging onto what she could of her mother. Life just isn't fare sometimes is all...
Thanks Joe,
Tara

survivorbc09

jworkman said:

21yr old Triple Negative
Hi Danielle,
I have been reading this thread and I've only talked to one other person that had something like me. Now that I'm reading about you it's like taking a weight off my shoulders. Here I am thinking I'm the only one who had no clue about any of this stuff. I was diagnosed with Metaplastic Carcinoma (which turns out that I am also Triple Negative) in late Feb 2010. I had a small lump in my left breast and didn't really think anything of it. I stopped drinking caffiene (because I sometimes get small knots from too much) but that didn't help. I went to the lady doctor to have it looked at (just thinking it was some sort of infection) and they weren't sure what it was. They sent me to a breast center and I got an ultrasound because it was already too large to have a mammogram. They then did a fine needle aspiration and a full biopsy. I got a cancer diagnosis a couple days later and went to see the surgeon. They said that they would just take the whole breast but they went ahead and let me see the oncologist. I did 4 chemo treatments and it stopped the growth but wasn't shrinking. I went ahead and got a full radical masectomy three weeks ago. They took 15 or so lymph nodes and they all came back clean. I didn't get reconstruction .. the surgeon said it would be better for me if I waited. So I go back to the oncologist next Thursday to see what's next. The tumor they took from my breast was 70% of my whole breast. It was the size of a large orange/small grapefruit. I felt the same way you do .. I just want it gone. I just want it out. I feel so much better now that it's gone. I had no idea that my arm would be sore and my shoulder would be stiff. But it's a small price to pay to get the tumor out. I'm still trying to cope with looking down and seeing this scar, and being "uneven" but I'm going next week to get something to put into my bra until I can get reconstruction. I'm not a whole lot ahead of you in treatment. But it would be nice to see how your reconstruction goes so I'll know what to expect. I'm sorry you're kind of alone through all of this. But .. even though all my family is here for me .. I still feel kind of alone because they can never really know what I'm going through or dealing with. It's been such an emotional journey so far and the last thing I thought I'd have to deal with at the age of 21 .. so please don't be a stranger if you want to talk or anything.

And about chemo ..
-- I only had 4 treatments .. so I don't know how much help I can be? But I would have chemo every Thursday and would be pretty wore out on Friday and Saturday .. but would start to feel better on Sunday and back to my usual self on Monday. I didn't lose my hair but had a lot of thinning. But I did have really thick hair. I went ahead and got a wig just in case it started to be noticable.

I have always hated when
I have always hated when they put us in a class or grade. We are all fighters and we all are survivors! Good luck to all of you!

GregStahl

24242 said:

Not easy Greg
I know it isn't easy to listen to people try to comfort you but that is all they know and at least they try. I on the other hand had friends who only wanted to live in the positive world and wanted to hear nothing of my cancer woe. I even had one of my best friends ask me how I was doing as he always did and most of the time I lied and said "FINE" like most sick people. But this day upon my arrival with parents to my home town after treatments I actually was having a very difficult time since suffering most side effects. When he asked I actually told him the truth and he just put his hand up like "talk to the hand", telling me he didn't want to hear about it. I just told him to never ask me again how I was feeling because I might actually think I could tell my friend the truth. Guess I was wrong.
It is difficult to not to be the one to fix this though that is all you truly want to do. WE all have to understand truly what we have control over and what we do not, often simplifying things for us. I wish I had a partner that appeared to care as much as you, though I know she is doing the best she can.
Your wife doing it her way is her way of keeping control of her body something we loose going through all of this. It isn't easy having our lives hang in the balance, in the hands of doctors. I am so glad that you are there and this is affecting you as much as her since this only shows just how much you care.
Your wife is one lucky woman,
Tara

Tara/Joe
Thanks guys. Second time around on this. Mom had this in the 70s when I was 7 and passed when I was 14. Was a long 7 years for her, for us.

The visit with the Onc was not all encouraging. Ruby wanted to wait until June to have her surgery because oldest is graduating HS and my 7 yr old has some activities for the end of the school year and a state bowling tournement he qualified for, but the Onc said now is better and not to do reconstruction. He feels something in the nodes and feels that if there is something there radiation would be in order.
CatScan first thing this morning and the BRAC test (which insurance doesnt pay for). Hate to be a "glass 1/2 empty" guy, but gut (she feels the same way) tells me the results will not be good.

Aortus

GregStahl said:

Tara/Joe
Thanks guys. Second time around on this. Mom had this in the 70s when I was 7 and passed when I was 14. Was a long 7 years for her, for us.

The visit with the Onc was not all encouraging. Ruby wanted to wait until June to have her surgery because oldest is graduating HS and my 7 yr old has some activities for the end of the school year and a state bowling tournement he qualified for, but the Onc said now is better and not to do reconstruction. He feels something in the nodes and feels that if there is something there radiation would be in order.
CatScan first thing this morning and the BRAC test (which insurance doesnt pay for). Hate to be a "glass 1/2 empty" guy, but gut (she feels the same way) tells me the results will not be good.

You're all in my thoughts and prayers.
I can't even imagine what this must be like, going through this first with your Mom and now with your wife. Looking back on the journey my beloved Moopy and I have been on, not knowing what to expect early on was actually a blessing.

On the other hand, there's no reason why the CT scan results have to be bad. Moopy and I spent a horrible weekend after her mastectomy in November 2008 dreading the results of her final pathology report - which turned out to be far less terrible than the surgeon had led me to believe in the conference room. In the words of the formidable Dr. Barbra Horn, ace oncologist: "He's obviously an excellent surgeon, but he needs to stick to surgery."

And even if the results fall into the "half empty" category, BC treatments have progressed a great deal since the 1970s: as my sister-in-law's mom (diagnosed Stage IV back in the early 80s) puts it, it's like comparing a Ford Pinto to a Mercedes SUV. The Moopster had six treatments of aggressive chemo and then 6 weeks of aggressive hyperthermic radiation. It wasn't easy - but she was last seen this morning cheerily assigning me household duties on her way out the door to work (hey, I work too!) and musing aloud about sales strategies. We're starting to get our life back. So will Ruby, and so will you. Just hang in there, okay? You're all in my thoughts and prayers.

Best,
Joe (and Moopy too)

bestill

Local women
Hi ... first of all, sending a hug. I'm a 17 year survivor - double negative (they only tested for estrogen and progesterone back then). Regarding someone in VA Beach, have you tried calling the ACS toll free number and asking about Reach to Recovery (a program that matches trained volunteers with newly diagnosed women in their area)? 800-227-2345 OR go to www.networkofstrength.org - a great organization with lots of resource folks (both over the phone and on-line).

Chemo has changed quite a bit since I had it but the one thing that's not changed is that it is tiresome and a slog BUT you'll get through it. Some good days (embrace them and take full advantage of the energy you'll have)...some crummy days - flu-like and just crummy...try to let them be what they are and rest as best you can. One thing that sometimes happens is a day of feeling low (weepy) - that's from the steroids they use and it is NORMAL! Another normal side effect that makes ya nuts is chemo brain - where you can't quite remember a word and feel like you're losing it (you're not, it's the chemo and it will pass) but meanwhile, it's nice to know you're not nuts!

Be good to yourself and let people bring you food and put your phone on do not disturb if you need some solitude. (A nice info sheet on how folks can help is available at www.choosehope.com (They offer Tips for Caregivers and Chemo Savvy tips - all done with a smile).

Hope you can use some of this info ... sending a smile your way. Bev (my real name)

Danielle321

bestill said:

Local women
Hi ... first of all, sending a hug. I'm a 17 year survivor - double negative (they only tested for estrogen and progesterone back then). Regarding someone in VA Beach, have you tried calling the ACS toll free number and asking about Reach to Recovery (a program that matches trained volunteers with newly diagnosed women in their area)? 800-227-2345 OR go to www.networkofstrength.org - a great organization with lots of resource folks (both over the phone and on-line).

Chemo has changed quite a bit since I had it but the one thing that's not changed is that it is tiresome and a slog BUT you'll get through it. Some good days (embrace them and take full advantage of the energy you'll have)...some crummy days - flu-like and just crummy...try to let them be what they are and rest as best you can. One thing that sometimes happens is a day of feeling low (weepy) - that's from the steroids they use and it is NORMAL! Another normal side effect that makes ya nuts is chemo brain - where you can't quite remember a word and feel like you're losing it (you're not, it's the chemo and it will pass) but meanwhile, it's nice to know you're not nuts!

Be good to yourself and let people bring you food and put your phone on do not disturb if you need some solitude. (A nice info sheet on how folks can help is available at www.choosehope.com (They offer Tips for Caregivers and Chemo Savvy tips - all done with a smile).

Hope you can use some of this info ... sending a smile your way. Bev (my real name)

Post Surgery Update
Hi Everyone,

Thanks for giving me encouragement and support, it helped me so much.

I had my bilateral mastectomy on May 7th, went home on May 8th and was surprised when I came out of surgery and already had somewhat of a chest. I am doing very well overall.

The best news came yesterday when my surgeon called with the lab results and everything came back clean, nothing anywhere, my lymph nodes were clear too! My left breast didn't have anything either but I am sure I made the right choice in having it removed as well. Now I have done everything in my power to keep it from coming back or from a new one showing up.

I see the plastic surgeon tomorrow and hopefully he will take the drains out. I'm ready to keep moving forward with this battle and win!

Good luck to all of you, I wish you the best and success in your battle as well.

Danielle

mkscolar

GregStahl said:

Wife is triple negative
My wife was diagnosed 4/20 with ductal carcinoma T3, its small at 1cm, but before we found the lump she had a mamogram in Jan.
The surgeon says she is a good candidate for a lumpectomy, but she wants to go with the mastectomy and preferably a bilateral. She works for a hospital and they are self insured and refuse to cover the bilateral unless a mass is detected. So the fight begins on that issue.
I have read a few websites thru MD Anderson, ACS, and one aimed at triple negative patients, about this and have so many questions, so many fears (for her and as caregiver). I thought the internet was a good thing, but seems to be giving me more questions than answers.

Sorry if I am rambling, somewhat lost, dazed, and confused at this point.

Additional Tests?
Greg,

They also recommended a lumpectomy for me as well. Fortunately for me, my surgeon had me get an MRI at the last minute. They told me I lit up the MRI like a Christmas tree with about 70-80 spots on each side. That confirmed what I had already wanted to do, get a double mastectomy. I would recommend an MRI to confirm that there are no additional spots before they do the lumpectomy. God willing nothing will be there. If there is, it will give you the confirmation you need to get it covered. God Bless you and your wife!

mkscolar

Danielle321 said:

Post Surgery Update
Hi Everyone,

Thanks for giving me encouragement and support, it helped me so much.

I had my bilateral mastectomy on May 7th, went home on May 8th and was surprised when I came out of surgery and already had somewhat of a chest. I am doing very well overall.

The best news came yesterday when my surgeon called with the lab results and everything came back clean, nothing anywhere, my lymph nodes were clear too! My left breast didn't have anything either but I am sure I made the right choice in having it removed as well. Now I have done everything in my power to keep it from coming back or from a new one showing up.

I see the plastic surgeon tomorrow and hopefully he will take the drains out. I'm ready to keep moving forward with this battle and win!

Good luck to all of you, I wish you the best and success in your battle as well.

Danielle

Great News
What fantastic news Danielle. I saw in your earlier post that you were looking for someone local to talk to. I would also recommend another site that has been a huge help for me: www.tnbcfoundation.org There are a lot of women on that board all of the time from all over the world. God Bless you!

24242

mkscolar said:

Great News
What fantastic news Danielle. I saw in your earlier post that you were looking for someone local to talk to. I would also recommend another site that has been a huge help for me: www.tnbcfoundation.org There are a lot of women on that board all of the time from all over the world. God Bless you!

Yippie
You go Girl,
What great news and nice that you can feel that much more positive when you are suprised with somewhat of a chest. Great NEWS and it is truly one step at a time and your has gotten a little easier with this kind of news.
Glad to hear and glad to hear you are doing so well.
I actually had a dinner party the day I got out of surgery my mother was there preparing the meal not me and having family around was a very good thing, made me feel somewhat normal.
Tara

GregStahl

Danielle321 said:

Post Surgery Update
Hi Everyone,

Thanks for giving me encouragement and support, it helped me so much.

I had my bilateral mastectomy on May 7th, went home on May 8th and was surprised when I came out of surgery and already had somewhat of a chest. I am doing very well overall.

The best news came yesterday when my surgeon called with the lab results and everything came back clean, nothing anywhere, my lymph nodes were clear too! My left breast didn't have anything either but I am sure I made the right choice in having it removed as well. Now I have done everything in my power to keep it from coming back or from a new one showing up.

I see the plastic surgeon tomorrow and hopefully he will take the drains out. I'm ready to keep moving forward with this battle and win!

Good luck to all of you, I wish you the best and success in your battle as well.

Danielle

Awsome news Danielle
Awsome news. Glad everything came back clean and my prayers for a quick recovery. Keep us posted.
Greg

4everyoung

GregStahl said:

Awsome news Danielle
Awsome news. Glad everything came back clean and my prayers for a quick recovery. Keep us posted.
Greg

Great News Danielle
I am soo happy for you. I don't believe no one should be going through something like this.

I am new to this website, I had no idea there were sooo many women with this type of cancer. I thought I was the only one with TNBC when I was diagnosed in March 2010. I went through the chemo, surgery and radation like most of you. However, No one has mention anything about not having clean margins, meaning cancer was starting to grow outside the lumph node or if anyone went through what the radation Dr. called it "Chest Wall Radiation". This is where they do radation close to the chest wall, through a small part of the heart, lung, neck and through the back. I was told if it comes back, it would probably come back in the scar or possibly the neck.

I went for my first PET Scan after radiation in February and everything so far looks good.

However, it would make me feel better to know that someone has or have gone through the same type of radation I did and have been cancer free for sometime. I am also on pins and needles because of the diet they say you need to stick with. It's very hard not to eat what my husband and 2 teenage daughters are eating.

I have not introduced myself properly. I was 39 at the time I was diagnosed with TNBC, I am married and have 2 teenage daughters, My eldest just turned 18 May 12th and the youngest is 16. My tumor was stage 3C and 6 cm. Unfortunately, the chemo did not shrink the tumor but only went through it like a piece of swiss cheese with holes.

Can anyone bring comfort to my tiring mind?

John_32

Danielle321 said:

Wife
Hi Greg,

It is awesome that you care enough to research for yourself and her. Yes, the internet is a good thing and yes it is overwhelming.

Since I was diagnosed in March I have scoured the internet and the forums for answers. At first it was a frantic search and I was not able to digest it all. The terminology, everyone else comfort level of discussing each and every detail. But now I have a certain level of peace knowing that the information the people on these forums give are facts and that they don't beat around the bush with the answers if you ask the question.

Since I am not the caregiver but the one affected I cannot know what you are feeling anymore than the caregivers can know what we are feeling. I'm sure it is just as frustrating on the other end. Just continue to support her and make sure you find other people that are caregivers that can provide some insight on how to deal with your situation. I'm sure there are forums for caregivers as well.

I wish the best for your wife and for you as well.

Danielle

brain metastases
My wife also has TNBC. She found the lump on our honeymoon and was diagnosed shortly thereafter, January 2009. She declined chemo and mastectomy, against the advice of doctors, but did have two lumpectomies for her Stage 0 DCIS, as well as radiation of her breast. But over the last several months I began noticing violent mood swings and outbursts of anger in which she just seemed to take on an entirely different personality. And about two months ago she began having minor seizures on one side of her body that would last for about 30 seconds. EMS that was called to the house after one of these episodes said it was probably an anxiety attack, but after the seizures came with increasing frequency she eventually went to the ER where they did a CAT scan of her brain. It revealed several tumors on one side of her brain and showed that her brain was very swollen. They gave her a high dose of a powerful steroid (Dexamethasone) to reduce the swelling and control the seizures, but she continued to have violent rageful outbursts. The doctors said that whole brain radiation was the only treatment they could offer her at this stage. I have read on the Internet a number of studies and they seem to all say that whole brain radiation can result in survival of an average of 5-6 months after the diagnosis, but that patients who do nothing may only live a month past the brain tumor diagnosis. Anyway, we have been separated for the past couple of weeks because she threw me out of the apartment during one of her bizarre outbursts of anger and has refused to contact me since then, nor has her family allowed me to contact her. Now it seems that she has suddenly flown off to Europe on a business trip and to visit her daughter (from a previous marriage) when she was scheduled to undergo whole brain radiation. Needless to say this is very distressing and I was wondering if anyone else knows of these kinds of personality changes and bizarre behavior in TNBC patients who develop brain metastases?

Danielle321

4everyoung said:

Great News Danielle
I am soo happy for you. I don't believe no one should be going through something like this.

I am new to this website, I had no idea there were sooo many women with this type of cancer. I thought I was the only one with TNBC when I was diagnosed in March 2010. I went through the chemo, surgery and radation like most of you. However, No one has mention anything about not having clean margins, meaning cancer was starting to grow outside the lumph node or if anyone went through what the radation Dr. called it "Chest Wall Radiation". This is where they do radation close to the chest wall, through a small part of the heart, lung, neck and through the back. I was told if it comes back, it would probably come back in the scar or possibly the neck.

I went for my first PET Scan after radiation in February and everything so far looks good.

However, it would make me feel better to know that someone has or have gone through the same type of radation I did and have been cancer free for sometime. I am also on pins and needles because of the diet they say you need to stick with. It's very hard not to eat what my husband and 2 teenage daughters are eating.

I have not introduced myself properly. I was 39 at the time I was diagnosed with TNBC, I am married and have 2 teenage daughters, My eldest just turned 18 May 12th and the youngest is 16. My tumor was stage 3C and 6 cm. Unfortunately, the chemo did not shrink the tumor but only went through it like a piece of swiss cheese with holes.

Can anyone bring comfort to my tiring mind?

TNBC Support
Hi 4everyoung,

I am sorry to hear of your current battle with TNBC. I have found the people on this website very supportive and helpful; however, there are other websites that also have people that are fighting the same cancer and may be able to answer your questions and give support as well. I check two other websites: http://community.breastcancer.org/
and http://forum.tnbcfoundation.org/

On Breastcancer.org if you look near the top right of the screen there is a drop down window that says "jump to a forum", click the arrow next to it and scroll down until you see Triple Negative and then go from there. Respond to a forum post or create one for yourself and many people will be there to help you.

I wish the best for you and will keep you in my prayers along with everyone else fighting this disease.

Danielle

sharice42

Danielle321 said:

TNBC Support
Hi 4everyoung,

I am sorry to hear of your current battle with TNBC. I have found the people on this website very supportive and helpful; however, there are other websites that also have people that are fighting the same cancer and may be able to answer your questions and give support as well. I check two other websites: http://community.breastcancer.org/
and http://forum.tnbcfoundation.org/

On Breastcancer.org if you look near the top right of the screen there is a drop down window that says "jump to a forum", click the arrow next to it and scroll down until you see Triple Negative and then go from there. Respond to a forum post or create one for yourself and many people will be there to help you.

I wish the best for you and will keep you in my prayers along with everyone else fighting this disease.

Danielle

Triple Negative diagnosed Nov 09- Stage 2. N1
I am triple negative, stage 2, n1. At the time of my mammogram and ultrasound on Nov. 13th, it was 1.7 cm by the time I had a lumpectomy on Dec 1, 2009, it was 2.5 cm.

I am currently in treatment doing 12 weeks of Taxol. I have completed 4 cycles every 21 days of adrymicine and cytoxene. Yes, this type of breast cancer has to be treated aggressively, after treatment you will not be able to take any hormone medication. Once I complete all chemo I will need radiation.

Feel free to contact me if you have any questions.

You have to stay focused and positive! I will keep you in my prayers.

e_hope

also TNBC
sorry, from PA

I am also TNBC stage 2b with grade 3 cells and brca 1 and 2 neg. 36 years old when diagnosed last feb.. had double mastectomy with reconstruction, 4 rounds dose dense AC and 4 rounds of taxotere. followed by 7 weeks of radiation.


As my oncologist so nicely put it... where going to drill you with harsh chemo 1 because your young and your body will be able to handle it and 2 because of the type of cancer we need to treat it VERY aggressively.. Its not a fun road, but you do make it to the other side.

Hope you are doing well...

Skeezie

e_hope said:

also TNBC
sorry, from PA

I am also TNBC stage 2b with grade 3 cells and brca 1 and 2 neg. 36 years old when diagnosed last feb.. had double mastectomy with reconstruction, 4 rounds dose dense AC and 4 rounds of taxotere. followed by 7 weeks of radiation.


As my oncologist so nicely put it... where going to drill you with harsh chemo 1 because your young and your body will be able to handle it and 2 because of the type of cancer we need to treat it VERY aggressively.. Its not a fun road, but you do make it to the other side.

Hope you are doing well...

Hi John,
I am so sorry to hear such a sad story. You must be frantic. I am always amazed when people on this site will ask the question of chemo or no chemo. All cancers, not only Triple neg. need to be treated agressively.

I met a girl at the hairdresser that has non-hodgkins lymphoma and has been fighting it for several years. Last week she was going to begin brain radiation and possibly whole brain radiation. I was not aware of a patient life expectancy to be only 5 to 6 months after whole brain radiation. This girl was upbeat about the prospect of getting well etc.

You asked about Triple neg behavior with met. to the brain but I don't think there is anything that would make the behavior any different than with any other cancer. You will be in my prayers. Please keep us posted.

Hugs, Judy :-)

John_32

Skeezie said:

Hi John,
I am so sorry to hear such a sad story. You must be frantic. I am always amazed when people on this site will ask the question of chemo or no chemo. All cancers, not only Triple neg. need to be treated agressively.

I met a girl at the hairdresser that has non-hodgkins lymphoma and has been fighting it for several years. Last week she was going to begin brain radiation and possibly whole brain radiation. I was not aware of a patient life expectancy to be only 5 to 6 months after whole brain radiation. This girl was upbeat about the prospect of getting well etc.

You asked about Triple neg behavior with met. to the brain but I don't think there is anything that would make the behavior any different than with any other cancer. You will be in my prayers. Please keep us posted.

Hugs, Judy :-)

brain metastases
Thanks Judy. Particularly with hindsight, I agree with what you say about all cancers needing to be treated aggressively. I very much regret now that my wife did not accept her doctors' recommendations of chemotherapy and mastectomy, recommendations which were made very strenuously. Perhaps there was a false sense of security by the fact that she was told she had Stage 0 DCIS and a sense that she had caught this early so she did not have to have such drastic treatments like chemotherapy and mastectomy. The oncologist was not a very effective communicator either and basically left us with a handout that had a bunch of confusing statistics on it comparing the survival rates of those who opted for chemotherapy and those who did not, but the statistics were so poorly organized that we were left with multiple interpretations of what they meant until we were next able to meet with the oncologist. That being said, the lesson here is that cancer is extremely serious at any stage because all it takes is one or two cells to break away and spread to another part of the body and put your entire life in jeopardy. This is what has happened to my wife, who went from Stage 0 DCIS and thought she was doing fine all year--even elated that a recent mammogram was all clear--while the cancer had meanwhile metastasized to her brain, suddenly resulting in a Stage 4 brain cancer diagnosis. I encourage every TNBC woman on this site to aggressively pursue chemotherapy and even mastectomy while the cancer is in its infancy because you don't want to go through what my wife is now facing. Clearly this cancer is very aggressive and fast-spreading, and therefore the response to it must also be fast and aggressive. And because TNBC does not generally respond to medication, these patients do not have the option of taking the same drugs that other patients can take if the cancer spreads to the brain--meaning, the only option may be whole brain radiation, which, by itself, is not a very effective treatment. A few recent studies have shown that TNBC has the poorest prognosis of all subsets of breast cancer that has metastasized to the brain, as well as the fact that TNBC is more likely to result in a distant metastasis (such as the brain), and thus results in a shorter overall survival rate. I know my wife and I were scouring the Internet for information when she was trying to decided about chemotherapy, and so, particularly to any husbands who are reading this whose wives are triple negative, please urge your wife to do chemotherapy--she may, even temporarily, only lose her hair; my wife, who now has brain metastasis, is beginning to lose her mind. This is very tragic and I only wish we could go back to a year ago and make different decisions.

Danielle321

John_32 said:

brain metastases
Thanks Judy. Particularly with hindsight, I agree with what you say about all cancers needing to be treated aggressively. I very much regret now that my wife did not accept her doctors' recommendations of chemotherapy and mastectomy, recommendations which were made very strenuously. Perhaps there was a false sense of security by the fact that she was told she had Stage 0 DCIS and a sense that she had caught this early so she did not have to have such drastic treatments like chemotherapy and mastectomy. The oncologist was not a very effective communicator either and basically left us with a handout that had a bunch of confusing statistics on it comparing the survival rates of those who opted for chemotherapy and those who did not, but the statistics were so poorly organized that we were left with multiple interpretations of what they meant until we were next able to meet with the oncologist. That being said, the lesson here is that cancer is extremely serious at any stage because all it takes is one or two cells to break away and spread to another part of the body and put your entire life in jeopardy. This is what has happened to my wife, who went from Stage 0 DCIS and thought she was doing fine all year--even elated that a recent mammogram was all clear--while the cancer had meanwhile metastasized to her brain, suddenly resulting in a Stage 4 brain cancer diagnosis. I encourage every TNBC woman on this site to aggressively pursue chemotherapy and even mastectomy while the cancer is in its infancy because you don't want to go through what my wife is now facing. Clearly this cancer is very aggressive and fast-spreading, and therefore the response to it must also be fast and aggressive. And because TNBC does not generally respond to medication, these patients do not have the option of taking the same drugs that other patients can take if the cancer spreads to the brain--meaning, the only option may be whole brain radiation, which, by itself, is not a very effective treatment. A few recent studies have shown that TNBC has the poorest prognosis of all subsets of breast cancer that has metastasized to the brain, as well as the fact that TNBC is more likely to result in a distant metastasis (such as the brain), and thus results in a shorter overall survival rate. I know my wife and I were scouring the Internet for information when she was trying to decided about chemotherapy, and so, particularly to any husbands who are reading this whose wives are triple negative, please urge your wife to do chemotherapy--she may, even temporarily, only lose her hair; my wife, who now has brain metastasis, is beginning to lose her mind. This is very tragic and I only wish we could go back to a year ago and make different decisions.

Chemo
Hi John and everyone else,

I'm sorry to hear about your situation but appreciate all of you sharing your life stories. You have all given me the reinforcement to know I am doing the right thing no matter how hard it is to do. It reminds me that I need to be strong and do all I can now.

I will start chemo next Friday. I will have a total of 8 treatments, one every two weeks. The first 4 will be adriamyicin & cytoxin and the last 4 will be taxol. I am pretty nervous about it and have been having anxiety come and go. I like to be prepared for things and like to have control of what I do with my life. TNBC has come into my life and taken that control from me and that is what has me all messed up.

I had the bilateral, in the process of getting fills in the tissue expanders (which suck! and hurt most of the time), I'm back at work, I did all the research I can do on wigs, hats, etc. to help myself be as normal as I can through this journey. Now let the battle begin!

Good luck to all of you and God bless

Danielle

weazer

John_32 said:

brain metastases
Thanks Judy. Particularly with hindsight, I agree with what you say about all cancers needing to be treated aggressively. I very much regret now that my wife did not accept her doctors' recommendations of chemotherapy and mastectomy, recommendations which were made very strenuously. Perhaps there was a false sense of security by the fact that she was told she had Stage 0 DCIS and a sense that she had caught this early so she did not have to have such drastic treatments like chemotherapy and mastectomy. The oncologist was not a very effective communicator either and basically left us with a handout that had a bunch of confusing statistics on it comparing the survival rates of those who opted for chemotherapy and those who did not, but the statistics were so poorly organized that we were left with multiple interpretations of what they meant until we were next able to meet with the oncologist. That being said, the lesson here is that cancer is extremely serious at any stage because all it takes is one or two cells to break away and spread to another part of the body and put your entire life in jeopardy. This is what has happened to my wife, who went from Stage 0 DCIS and thought she was doing fine all year--even elated that a recent mammogram was all clear--while the cancer had meanwhile metastasized to her brain, suddenly resulting in a Stage 4 brain cancer diagnosis. I encourage every TNBC woman on this site to aggressively pursue chemotherapy and even mastectomy while the cancer is in its infancy because you don't want to go through what my wife is now facing. Clearly this cancer is very aggressive and fast-spreading, and therefore the response to it must also be fast and aggressive. And because TNBC does not generally respond to medication, these patients do not have the option of taking the same drugs that other patients can take if the cancer spreads to the brain--meaning, the only option may be whole brain radiation, which, by itself, is not a very effective treatment. A few recent studies have shown that TNBC has the poorest prognosis of all subsets of breast cancer that has metastasized to the brain, as well as the fact that TNBC is more likely to result in a distant metastasis (such as the brain), and thus results in a shorter overall survival rate. I know my wife and I were scouring the Internet for information when she was trying to decided about chemotherapy, and so, particularly to any husbands who are reading this whose wives are triple negative, please urge your wife to do chemotherapy--she may, even temporarily, only lose her hair; my wife, who now has brain metastasis, is beginning to lose her mind. This is very tragic and I only wish we could go back to a year ago and make different decisions.

Hi John
I too am triple negative, had chemo and radiation and starting too feel alot stronger.
I have a question how could she get a clear mamo?
Karie