My breast is incredibly sore - still waiting for my biopsy result - meet with surgeon tomorrow -

Lola7

STAGE IV BREAST LOBULAR CANCER NOW METASTICED TO MY LIVER

I cannot believe that I was diagnosed Oct 18th/12 with lobular breast cancer and now on Dec 31st/12 - new years' eve the oncologist tells me that chemo put on hold as they finally did a ct scan on my organs and my liver is showing spots - too many to operate - very small spots less than a 1 cm ea - but there are about 7 scattered around the liver.  Even though the liver can grow back after operations - they on;y operate on large tumors as a last resort - and the mortality rate is high.  Although my prognosis has changed from a 50/50 survival of Stage III/III breast cancer to now being told I have 6 months to live if the chemo works possibly 9 months - but the doctor said she will only say 6 months for now and see how I repond to chemo --  I started this morning on Taxol for about and hour and a half - will do 3 weeks on and one week off for 6 months.  they will send me for another ct scan in 3 months to see if chemo is working.  Doctor told me to get my affairs in order and enjoy every minute I have with my family and do everything I enjoy doing now.

I am so depressed I just cry all the time - my husband and kids are devastated - we are building our retirement homein florida and I will never get to enjoy it.  I have to keep positive but every day is just more bad news - I was so looking forward to starting chemo to get better - but there is not much to look forward to as there is no light at the end of the tunnel.  Today I sat with the social worker, my husband and doctor during my first  chemo session - everyone is so supportive but they all say they feel so helpless as they want to do more - and no one can - only god may bless me with more time with my wonderful family.   trying to keep postive  - I'm going to see and psychologist soon for some help to keep positive and try meditating.  No effects from chemo which worries me - I am not tired or feeling ill - but I just had it this today - so maybe things will change - I am worried chemo is having no effect on my cancer.

I can't stop blaming myself for letting this get out of hand - and insisting to the surgeon (who was a complete idiot) that I wanted to see and oncologist in Canada before surgery - as I had heard lobular cancer can be very aggressive and spread quickly - I feel that if I had had the chemo first to shrink the tumor  in late October - I may have had a chance at it not spreading to my liver.  Any ladies out there that have liver spots and living for longer than 6 months?? - pls give me some hope - anyone use taxol for this cancer that have been successful in delaying this horrible disease?  Pls let me know and give me hope.  At 56 I'm just not accepting this very well

love you strong ladies

 

 

Josie21

Lola7 said:

STAGE IV BREAST LOBULAR CANCER NOW METASTICED TO MY LIVER

I cannot believe that I was diagnosed Oct 18th/12 with lobular breast cancer and now on Dec 31st/12 - new years' eve the oncologist tells me that chemo put on hold as they finally did a ct scan on my organs and my liver is showing spots - too many to operate - very small spots less than a 1 cm ea - but there are about 7 scattered around the liver.  Even though the liver can grow back after operations - they on;y operate on large tumors as a last resort - and the mortality rate is high.  Although my prognosis has changed from a 50/50 survival of Stage III/III breast cancer to now being told I have 6 months to live if the chemo works possibly 9 months - but the doctor said she will only say 6 months for now and see how I repond to chemo --  I started this morning on Taxol for about and hour and a half - will do 3 weeks on and one week off for 6 months.  they will send me for another ct scan in 3 months to see if chemo is working.  Doctor told me to get my affairs in order and enjoy every minute I have with my family and do everything I enjoy doing now.

I am so depressed I just cry all the time - my husband and kids are devastated - we are building our retirement homein florida and I will never get to enjoy it.  I have to keep positive but every day is just more bad news - I was so looking forward to starting chemo to get better - but there is not much to look forward to as there is no light at the end of the tunnel.  Today I sat with the social worker, my husband and doctor during my first  chemo session - everyone is so supportive but they all say they feel so helpless as they want to do more - and no one can - only god may bless me with more time with my wonderful family.   trying to keep postive  - I'm going to see and psychologist soon for some help to keep positive and try meditating.  No effects from chemo which worries me - I am not tired or feeling ill - but I just had it this today - so maybe things will change - I am worried chemo is having no effect on my cancer.

I can't stop blaming myself for letting this get out of hand - and insisting to the surgeon (who was a complete idiot) that I wanted to see and oncologist in Canada before surgery - as I had heard lobular cancer can be very aggressive and spread quickly - I feel that if I had had the chemo first to shrink the tumor  in late October - I may have had a chance at it not spreading to my liver.  Any ladies out there that have liver spots and living for longer than 6 months?? - pls give me some hope - anyone use taxol for this cancer that have been successful in delaying this horrible disease?  Pls let me know and give me hope.  At 56 I'm just not accepting this very well

love you strong ladies

 

 

I am so sorry you are facing

I am so sorry you are facing this challenge. I wish I could be more helpful to you, but maybe one of the other ladies can be. Since that idiot spammer was on the site this weekend I just wanted to make sure everyone saw your post. You are in my prayers!!! And please stop blaming yourself. You did nothing wrong. 

delayne_11

Lola7 said:

STAGE IV BREAST LOBULAR CANCER NOW METASTICED TO MY LIVER

I cannot believe that I was diagnosed Oct 18th/12 with lobular breast cancer and now on Dec 31st/12 - new years' eve the oncologist tells me that chemo put on hold as they finally did a ct scan on my organs and my liver is showing spots - too many to operate - very small spots less than a 1 cm ea - but there are about 7 scattered around the liver.  Even though the liver can grow back after operations - they on;y operate on large tumors as a last resort - and the mortality rate is high.  Although my prognosis has changed from a 50/50 survival of Stage III/III breast cancer to now being told I have 6 months to live if the chemo works possibly 9 months - but the doctor said she will only say 6 months for now and see how I repond to chemo --  I started this morning on Taxol for about and hour and a half - will do 3 weeks on and one week off for 6 months.  they will send me for another ct scan in 3 months to see if chemo is working.  Doctor told me to get my affairs in order and enjoy every minute I have with my family and do everything I enjoy doing now.

I am so depressed I just cry all the time - my husband and kids are devastated - we are building our retirement homein florida and I will never get to enjoy it.  I have to keep positive but every day is just more bad news - I was so looking forward to starting chemo to get better - but there is not much to look forward to as there is no light at the end of the tunnel.  Today I sat with the social worker, my husband and doctor during my first  chemo session - everyone is so supportive but they all say they feel so helpless as they want to do more - and no one can - only god may bless me with more time with my wonderful family.   trying to keep postive  - I'm going to see and psychologist soon for some help to keep positive and try meditating.  No effects from chemo which worries me - I am not tired or feeling ill - but I just had it this today - so maybe things will change - I am worried chemo is having no effect on my cancer.

I can't stop blaming myself for letting this get out of hand - and insisting to the surgeon (who was a complete idiot) that I wanted to see and oncologist in Canada before surgery - as I had heard lobular cancer can be very aggressive and spread quickly - I feel that if I had had the chemo first to shrink the tumor  in late October - I may have had a chance at it not spreading to my liver.  Any ladies out there that have liver spots and living for longer than 6 months?? - pls give me some hope - anyone use taxol for this cancer that have been successful in delaying this horrible disease?  Pls let me know and give me hope.  At 56 I'm just not accepting this very well

love you strong ladies

 

 

No one knows!

Dear Lola,

i do not post often on the board, but I feel overwhelmed to reassure you that NO ONE knows how long we have to live! The numbers given to you are worst case scenario statistics. As you may know, I am my sister's caregiver. She is 40 and was diagnosed with Stage 4 breast cancer with metastasis to the brain on February 1, 2012. She was given 6 months to live. She is alive and well today and has responded very well to her treatments. (Arimidex and Xeloda, total brain radiation, craniotomy) The Oncologist says she has many good years ahead of her. So yes, the statistics with her type of cancer do not look good, but NO ONE knows!! She and many more here are living proof of that. Attitude is key to your health. Please just love your family, love yourself, and enjoy you life. I will never understand why things happen. I work and have for 10 years as an EMT for our Fire/EMS Department. I have seen just about everything and believe me, life and the outcome of life is not for us to question or wonder about. God has that covered for us. Be happy sweet lady and never give up. We will never understand everything and that's ok....sometimes that is just the way it is meant to be. Please keep us informed as I follow your story closely and pray for you daily. 

With love,

Traci

Lola7

Thank you all so much for your kind words and support!!

I am just overwhelmed these days with sadness - and I know I have to stop feeling this way but it is so hard - I am trying to keep hopeful that I will be the lucky girl who gets to live another 2 years - even if it is in pain - I spent hours and hours scouring the internet for clinical trials on liver mets - but I see why my doctors keep telling me to just enjoy the time I have - its is so difficult to find a trial that will even take you and then there is no way of knowing if it will even make any difference in extending your outcome at all.  I have gone over all the stats and liver seems to be one of the worse scenarios - haven't found anyone yet living beyond the 2 year mark - and they are the lucky ones.  I just had a friend pass away from brain cancer doctors gave him a few years - but he fought the battle and lived 11 years - he was fortunate to be able to see his children grow.  I just wish liver cancer had more good news - but there doesn't seem to be a ton of research on liver - breast cancer is getting the research but if you have breast cancer and it mets to the liver - you are in the liver category and suddenly I find the doctors change their tune and youre done.   I sat last friday on chemo watching the other women complain about how they will lose their hair during chemo in their fight against breast cancer - and I thought how lucky are they to be fighting breast cancer and that it has not metastisized elsewhere - I am so sorry to think this way - but its so hard when you are given no hope of beating a cancer.I could not believe I was thinking that way - that they are lucky to be fighting a cancer they may be beat.    the nurse told me they rarely get someone coming in on their first chemo treatment that is terminal - and she was so sorry for me - everyone kept telling me you don't look sick are you sure the doctors are right?  well on your first chemo treatment you don't usually look too sick - makeup and hair always helps you look good .  For xmas I asked my kids for a family portrait photo - which we did - it came out great - haven't had one done since they were little - the photo was taken before I knew the cancer had spread to my liver -  I could see in the photo I had hope - my daughter expressed how good I looked in the photo - mentally I was still fighting this disease as there was a chance of beating it - but now its come down to how long and how well I can manage the chemo to keep the fight going.  chemo is great if you have hope but when there is little hope - you really wonder why bother doing the chemo to make you even sicker and they tell you the same thing - 6 months.   I'm sorry to go on - and I know I am feeling sorry for myself - I just wished I lived in the U.S. where mammograms are done every year - this may have been caught - not like in Canada where they are only required every 2 years - I had to insist on one after a year and a half because I felt the lump.

My husband is actually a firefighter for 25 years and even though  it is always hard to watch someone you love go through this - he is amazing - but it is taking its toll on him.

Thank you for the website - I will check it out - I have to get my head around this - and keep on -  my husband is going on a trip to Florida Jan 28th - I may just hop on the plane too -  what do I hve to lose???  - I can always pay for a chemo treatment in the U.S. while I'm there so I don't fall behind - although at this point I wonder if it would even matter if I missed a treatment.    Pls any Stage IV ladies chat to me and need your help and support - I will be there for you once I get over the shock of this.   Love you ladies  - Lola  (ps that's my puppies name - I am Phyllis -  I may as well come out of the closet - lol)  I was protecting my privacy but cancer is not a private disease as we all know. 

DebbyM

Lola7 said:

Thank you all so much for your kind words and support!!

I am just overwhelmed these days with sadness - and I know I have to stop feeling this way but it is so hard - I am trying to keep hopeful that I will be the lucky girl who gets to live another 2 years - even if it is in pain - I spent hours and hours scouring the internet for clinical trials on liver mets - but I see why my doctors keep telling me to just enjoy the time I have - its is so difficult to find a trial that will even take you and then there is no way of knowing if it will even make any difference in extending your outcome at all.  I have gone over all the stats and liver seems to be one of the worse scenarios - haven't found anyone yet living beyond the 2 year mark - and they are the lucky ones.  I just had a friend pass away from brain cancer doctors gave him a few years - but he fought the battle and lived 11 years - he was fortunate to be able to see his children grow.  I just wish liver cancer had more good news - but there doesn't seem to be a ton of research on liver - breast cancer is getting the research but if you have breast cancer and it mets to the liver - you are in the liver category and suddenly I find the doctors change their tune and youre done.   I sat last friday on chemo watching the other women complain about how they will lose their hair during chemo in their fight against breast cancer - and I thought how lucky are they to be fighting breast cancer and that it has not metastisized elsewhere - I am so sorry to think this way - but its so hard when you are given no hope of beating a cancer.I could not believe I was thinking that way - that they are lucky to be fighting a cancer they may be beat.    the nurse told me they rarely get someone coming in on their first chemo treatment that is terminal - and she was so sorry for me - everyone kept telling me you don't look sick are you sure the doctors are right?  well on your first chemo treatment you don't usually look too sick - makeup and hair always helps you look good .  For xmas I asked my kids for a family portrait photo - which we did - it came out great - haven't had one done since they were little - the photo was taken before I knew the cancer had spread to my liver -  I could see in the photo I had hope - my daughter expressed how good I looked in the photo - mentally I was still fighting this disease as there was a chance of beating it - but now its come down to how long and how well I can manage the chemo to keep the fight going.  chemo is great if you have hope but when there is little hope - you really wonder why bother doing the chemo to make you even sicker and they tell you the same thing - 6 months.   I'm sorry to go on - and I know I am feeling sorry for myself - I just wished I lived in the U.S. where mammograms are done every year - this may have been caught - not like in Canada where they are only required every 2 years - I had to insist on one after a year and a half because I felt the lump.

My husband is actually a firefighter for 25 years and even though  it is always hard to watch someone you love go through this - he is amazing - but it is taking its toll on him.

Thank you for the website - I will check it out - I have to get my head around this - and keep on -  my husband is going on a trip to Florida Jan 28th - I may just hop on the plane too -  what do I hve to lose???  - I can always pay for a chemo treatment in the U.S. while I'm there so I don't fall behind - although at this point I wonder if it would even matter if I missed a treatment.    Pls any Stage IV ladies chat to me and need your help and support - I will be there for you once I get over the shock of this.   Love you ladies  - Lola  (ps that's my puppies name - I am Phyllis -  I may as well come out of the closet - lol)  I was protecting my privacy but cancer is not a private disease as we all know. 

Sending you a big hug!

Sending you a big hug!

camul

Lola, Phyllis

either way, I just read this thread for the first time.  Do not panic because it is in your liver.  Chemo does work systemically so it should slow the growth in the liver also.  I am stage iv and was initally told probably 3 -6 months, maybe a little longer if the chemo slows the progression.  It did on the initial chemos.  I am still her 2 1/2 years later.  The cancer never stopped growing but it did slow significantly at first.  I was stage 1 with IDC in 2002, and diagnosed with mets to the bones and skin in 9/2010.  While on chemo, it spread to the connective tissues and liver.  First spot to the liver was about 18 months ago , 3 months later, the spot was a tumor with an additional one, so now 2 tumors in the liver. 

My initial mets diagnosis was to the bones and skin, with tumors "too numorous to count". I have never given up hope.  I was on chemo for almost 2 years on weekly regimins, then daily.  It got to the point where my body will no longer tolerate chemo so I am only on Herceptin, Evista (a hormone blocker) and a bone shot every 4 weeks.  My mobility had decreased, and the pain increased, but I have been so blessed for these last 2 1/2 years!  There is a good chance that you may respond very well to the chemo and be around for many years, the doctors go by statistics, and we are not statistics!  Look at Doris (Sirod), and Cypress Cynthia, they have been around for many years with mets. 

My oncologist has said since day one of the tumors in the liver, as long as the bloodwork is showing that my liver function is good, we wont worry about the tumors.  My function changed about 5 months ago.  He repeated the tests 3 months later and it is still functioning.  Unfortunately, my cancer has never stablized or gone into remission, but I am still here and living, so the chemo slowing the cancer has been enough to give me more time.  Never give up.  You can live with tumors in your liver.  Initially I pressed my onco for a timeframe, but even when he gave me 3-6 months, he said that was only his opinion based on how widespread and aggressive my cancer is.  He also said that didn't mean anything, it all depends on how my body responds, and mostly my attitude. 

Phyllis, as hard as it is, please do not knock yourself down about what you should have done.  With Lobular, it usually doesn't even show up until it is fully formed. 6 months prior to my mets diagnosis, I went to the dr for neck/spine pain and was told it was a herniated disk and referred to physical therapy.  In the month before I was diagnosed stage iv, I went to a clinic for pain in my chect/ribs.  The Dr took a lung xray, didn't like what she saw, sent me to the er for a ct.  The er dr told me it was nothing, and gave me loritab for the pain.  Told him I wouldn't take it as pain meds make me too sick.  He said take tylenal.  3 weeks later, went to Washington, 12 hour car trip.  By the time I got there, my back hurt so bad as well as my chest.  Came home 5 days later, called onco and he saw me the next morning.  Looked at the CT from a month earlier and said it looked like my bc had metastisized to my bones.  PET confirmed this. 

This was all at a US hospital.  I think sometimes there are just doctors who are ignorant and too full of themselves to do the research so they can give a proper diagnosis.  I do not believe it is just the Canadian medical system.  There are bad doctors everywhere, as well as excellent ones. 

I hope you are able to spend this time with your family doing all the things that make you happy and will give your family happy memories.  My blessing in this disease was learning how to say no, and being given the opportunity to spend time with those I love and cherish. 

 

Never give up hope.  My prayers are with you,

Carol