Mom died of metastatic breast cancer.Many unanswered questions.

JodiL

My mother was diagnosed with breast cancer in Sept. 2011. It was just at a stage 2, she received a lump ectomy, chemo and radiation and was deemed cancer free up until August this year.  She wanted a full mastectomy but doctors didn't feel it neccessary. They tested her sentinal nodes and was told they were good as well.  This April, she started having a bad cough and trouble breathing. She was diagnosed with pneumonia and given antibiotics and advair.  She never seemed to get any better. It seemed like she was going to the doctors all the time and they kept saying her test results were good and they couldn't find anything wrong. She was also always complaining about pain and was told it was the side effect of her cancer meds and she had to get used to it. Finally in July, she went again to her PCP because of the breathing trouble. Her Oxygen was at 86. He gave her a steroid injection, gave her some breathing treatments and said it was an after effect of receiving radiation. She was sent to a lung doctor and was told again they didn't know what was wrong. Finally on Aug. 11th she started having bad pain in her leg and I was worried about a clot. She went into the E/R and had an abnormal CT - showing masses in her lungs and liver. The following week she had a PET scan that showed malignancy in her lungs, thyroid, liver, nasal bone, hips, shoulder, spine.  Just everywhere. We met with the doctors to discuss treatment etc. She died on Sept. 1st. I have so many questions I don't even know where to begin. I guess first is, are there many people out there that have heard of breast cancer speading this fast?  Would I be able to contact her oncologist for information on the exact type etc. so that I can make my own doctors aware?  If this is a more rare type of cancer, how high is the hereditary factor?

MelissaDallas

Probably the wisest thing would be to get genetic counseling.  How old was your mother at diagnosis?  Younger age diagnosis makes it more likely to be a genetic syndrome breast cancer, but in reality less than 10% of breast cancer is hereditary.  However, having a first degree relative raises your chances.

Things that tend to make for more aggressive breast cancers are high grade (3), herceptin positive or triple negative types.

I'm sorry about your mom.

stride

JodiL, breast cancer can spread very, very fast. There are many types of breast cancer, and each patient is different. I agree with Melissa's suggestion that you get genetic counseling, just for your own peace of mind. I have fast-spreading cancer and no family history or BRCA gene mutations. So do not jump to the conclusion that it is hereditary. Sometimes there are just no answers.

I am so sorry that your mother's symptoms were not diagnosed properly earlier. It is shocking the doctors did not think to order a CT scan sooner for someone with a history of breast cancer.

rozem

jodi - yes, unfortunately bc can be a type that spreads quickly and is more aggressive.   Like melissa said above there are subtypes that behave more aggressively.  The only think i would add is that i would ask your doctors if you mom was triple neg, there is a greater liklihood of hereditary gene (BRAC) with triple neg especially when combined with young age

Im sorry about your mom.  Depending on her age at diagnosis and genetics testing you MAY be at higher risk.  Use this information to advocate for better and more frequent screening

melmcbee

Jodi, I just want to send a big cyber hug and tell you how sorry I am about your mother. I hope you get a mammo and do self breast exams as well as genetic testing. Mine didnt show on mammo but if I had done my self exams I might would have found it sooner.

Moonflwr912

Jodi, my mom passed 20 years ago in May. She had BC 7 years before. She ended up with bring hospitalized for dehydration in Feb. She went back home and a month later she started to feel pain in her abdomen. She went yo the docs and they gave her pills. In april they scheduled her for abdominal surgery thinking it was gallbladder. They operated on her in May. She was fully metasticized over every organ. She had xrays but nothing showed.she passed away 2 days after surgery. So yes it can grow very fast. Get your moms records and get the pathology report to see what type of cancer she had. That will help tell you if it has a genetic component. I wish I were able to get hold of my moms reports but after 20 years no chance.

My sympathies on the passing of your mom. Do what you can to help you deal with the info you have. Much love.

Beesie

Jodi, I'm so sorry about your mother.

To your question, "are there many people out there that have heard of breast cancer speading this fast?"  the answer is "Yes", that can happen.  Two years from diagnosis to passing away is short, but it does happen that way sometimes.

What most likely happened is that your mother had a very aggressive cancer that started to spread shortly after it developed in her breast.  So even though the cancer in her breast might not have been too large and even though her nodes were clear, it's likely that a few cells from the cancer moved into her bloodstream years ago - well before she ever knew she had breast cancer - and those cells travelled to all those other parts of her body and took hold there and started to develop. The role of chemo is to try to kill off any cancer cells that have moved into the body, but if there are too many of those cells, it's just impossible.  So unfortunately, by the time your mother was diagnosed, it's quite likely that the die was already cast.  The cancer in the other parts of her body might have been too small to be detected at that time (I don't know if your mother had any CT or PET scans at the time of her original diagnosis) but they almost certainly were already there.

You mentioned that your mother had wanted a mastectomy but her doctors didn't feel that it was necessary.  Given how quickly she succumbed to the cancer, the doctors almost certainly were right. A mastectomy wouldn't have made any difference  because in all likelihood the cancer cells had moved beyond your mother's breast well before the surgery was done.  This is why so many studies have shown that the survival rate is the same whether one has a mastectomy or lumpectomy - it's not the cancer cells in the breast that are dangerous; it's the cancer cells that have moved into the body that are dangerous.  Usually this stealth movement of the cancer cells into the bloodstream (or the lymphatic system - even if the nodes appear clear) happens well before anyone even knows that they have breast cancer.

As MelissaDallas said, most breast cancer is not genetic. Was your mother post-menopausal or pre-menopausal when she was diagnosed?  If she was pre-menopausal, then there is a greater risk that her cancer might have been genetically caused, but even at that, unless she was very young, the odds are much greater than her cancer was random.  As for the type of cancer or whether it's was a rare type or a more common type, that wouldn't really indicate much in terms of whether your mother's cancer might be genetic.  BRCA cancers (the most common genetic mutation) are more likely to be triple negative (ER-, PR-, HER2-) but most women diagnosed with triple negative cancers are not BRCA+.  And some women who are BRCA positive have ER+/PR+ cancers or HER2+ cancers.  Additionally, to my understanding (someone can correct me if I'm wrong), two people in the same family who have the same BRCA gene might each develop a different type of breast cancer.  So even if your mother's cancer was genetic, it doesn't mean that you have inherited the same gene, and if you have, it doesn't mean that you would get the same type of breast cancer.

I will second Melissa's suggestion that you see a genetic counsellor.  One of the things that the counsellor will want to understand is the full family health history on your mother's side of the family - her siblings, parents, etc. - in order to determine if there is a likelihood that her cancer might have been genetic.  If there are no other cases of breast cancer, ovarian cancer or prostate cancer (and a few other cancers) in her family, then it's much less likely that her cancer was genetic, and that you would be also be at risk.

I hope that helps.

Claire_in_Seattle

Jodi....first of all, I am so sorry you lost your mother, and can't imagine her suffering.

That said, I don't think that having a lumpectomy instead of a mastectomy made any difference in the outcome.  Most likely, the cancer had already spread to other areas of her body by the time she had surgery.  This can happen even if the lymph nodes aren't involved.

I have no idea what original tests she had.  But even with a full body scan, you can't always detect metastatic cancer.  Or not until the cancer has grown to a certain size.  That is the reason for chemotherapy....to wipe out those suckers, but it obviously didn't work.

When my mother died from lung cancer, it took 17 days from hospitilization till the time she was no longer with us.  When cancer gets to a certain size, it just spreads like wildfire.  Growth is exponential, not linear.  We initially thought the problem was pneumonia until a fluid sample showed cancer.

You can be tested for a genetic predisposition to breast cancer.  But most of us don't fall into that category.  There is a message in here to have symptoms that don't go away right away checked out thoroughly (linger for two weeks or more).  And unfortunately, you have to be one to make sure that this happens.

Two years is about the length of time it would normally take for undetected micro-mets to develop into rampant disease.  Again, I am sorry that she didn't get scanned when she first had symptoms.  However, as I learned when my mother died, cancer already has a very strong grip by the time there are any obvious symptoms breathing (most people can lose up to 40% of their breathing function before they are aware that something is wrong).  And a secondary infection of pneumonia is also likely.

None of this will bring your mother back and I am so sorry she is not here.  Get tested, and then assume you will be just fine.  Just do those mammograms and any other tests.  Get to the bottom of anything seriously wrong.  Sending you a big hug...... - Claire

JodiL

Thank you all so much for your replies.  The information you have all shared means so much. One of the things that I have been struggeling with is feeling like I should have done more. Gone to ALL of her doctors appointments, pushed them to do more.  In so many ways I was feeling like I failed her and the doctors failed her. There is just so much about it all that I don't understand. I plan to dedicate much of my time learning and trying to spread awareness.   Thank you again for the answers and support.

Peace & Blessings

imjill

I'm so very sorry for your loss.

NatsFan

Jodi - I am so sorry for your loss.  My mom also died of b/c - in her case her doctor ignored her lump for a year insisting he could tell by feel that it wasn't cancer, despite the fact that her sister had b/c a few years prior.  This was back in the 70's when people believed their doctors unconditionally.  By the time my mom was properly diagnosed, she was Stage IV and lived only 2 more years.  I was only 24 at the time, and also shared many of the same feelings you have now - I should have done more, I feel that I failed her, I should have pushed her doctors, etc.  But hindsight is 20/20, and you can't change the past.  My guess is that your mom wouldn't blame you for anything and that you were supportive and loving to her all the way through.  My guess also is that she'd want you to learn from her experience.  The best you can do now is educate yourself and take the lessons learned from her experience to heart.  That's what I tried to do.  I had mammograms regularly.  When I found my lump, I was in my doctor's office the next morning, and got my diagnostic mammogram and ultrasound that afternoon, and had the biopsy within a week.  I went to a NCI-designated cancer center for a second opinion consult, and also did my research and learned everything I could.  I trusted my doctors, but I also independently verified everything they said and didn't hesitate to ask questions.  I got second and even third opinions from doctors and made sure that I fully understood what each of them said and the reasons for their recommendations.  Doctors are human beings, and they make mistakes, so becoming an informed patient is one of the best ways you can guard against those mistakes happening.  Those are the lessons I learned from my mother's experience. 

Absolutely get a copy of all your mother's medical records, including her pathology reports and reports relating to all scans, etc. Depending on what scans were done, you may even be able to get a DVD copy of the scans.  Hang on to them.  Those may prove valuable to you and your medical team down the line should you be faced with this, or may prove valuable to other family members who may face this as well.

Then, live your life!  I think the best gift you could give your mom would be to live your life to the fullest in her honor and memory.  Hugs to you.

Fentisha

My grandmother at 83 has just been diagnosed with maestatic bc into the lung, bone, kidney and brain.   That was on December 6, 2013.  She is still in her home, walking and talking and little pain.  She has the persistant cough from the lung and some pain in the bone at night.   I know this is a difficult question as oncologist dont want to answer this, but how long does she have., what do i need to watch for?   How will I know she is close or will this go quick because it spread so quickly?   She was diagnosed with original cancer at 81.   Now it spread.  Can someone please be blunt and tell me the truth. 

Justme123abc

Hi everyone I am new to the boards. I have been reading them for a few months now and am so happy I found them. They have given me strength and comfort right now. My mother is a senior lady age 83 years old and I found out just this December that she has breast cancer she knew but did not say anything. She fell down and hurt her back went to the hospital and there they asked about this large lump she had I was shocked they did test and she had stage 4 b/c. I cried and cried for her and with her she was scarred, confused, and sad. Things progressed rapidly she is now in palliative care sedated and may not make it through the next few days she is very ill and wasted away my heart is broken when she first went in the hospital they did radiation 5 sessions that was it. They said that her cancer had spread to her bones, liver, stomach all over so they could do nothing for her. She though she was going to go home. And at first I though we had at lease a year or so. But she never left the hospital only got worse and now is dying. I feel the guilt and anger at the hospital at not doing enough also feeling how could this have happened I am angry at this disease how it hurts and destroys people and their families.

Thank you for listening. Thanks for having a forum that allows for family members to have a place to grieve and share.  

Justme123abc

Sadly the disease won the fight. My mother passed away this Friday. My heart is broken and the tears flow, but she is free from the pain and worry and asked to go in peace if she could and I believe she did. I pray that others are healed from this and that families can be spared from this disease. To each person who has lost my heart goes out to you to each person who is fighting my prayers are with you.

gcorinaramos

I'm very sorry for your loss.