Stage 4- Just got the news

[mariaaci]

My 47 year old aunt just got diagnosed with stage 4 ovarian cancer today.  Her and I are very very close and I am just not doing well with the news. I was trying to convince myself that this was all gonna turn out to be a bad mistake but it's not, it's the real deal.  She's actually doing better handling the news than the rest of us.  Her husband is a total mess; crying sporadically but yet trying to remain strong at a time he feels helpless and weak.  

Can some folks give me some info on what we can expect based on the following info:?

She had a full body scan today that showed the cancer spread to the outer lining of her stomach and outer lining of rectum. The doctor will start her first chemo treatment on Tues and he gave a 75% chance the cancer is cureable.  We're hoping 75% is really what her chances are as it's better than 50-50.  My uncle is worried 75% still means she may die...we expect the chemo to take a toll on her but if it keeps her alive and makes her well it's worth the fight.  If the odds of survival are not good I at least want to know for myself so I can plan to make the most of the time we have, take her to do things I know she enjoys and always wanted to do but never had a chance to because she was so busy taking care of everyone in the family with her kindness and concern.  Now she needs us most.  I'm hopeful but affraid for her and her family.  Can anyone give me some input please?

[mariaaci]

From what I understood (and I tried not to ask too many detailed questions when I first heard the news) I was told her PCP broke the initial news to her and handed her a paper that said her diagnosis was endocarcinoma.  I'm not even exactly sure what that is other than I know it's cancer and to me cancer is cancer-that was all my ears heard as I felt myself feeling faint from the shock.  Then the tests began and we just found out Friday the results of the full body scan that they told me where the cancer was being shown.  From what I understood it originated in the ovary but I don't know much more than that.  I remember hearing something about a tumor being 2 cm; I assume this was the one on the ovary but I could be wrong.  

Her husband has no choice to keep working but his boss is very understanding that he can't put in the full days now that his wife is ill.  They can't afford for him to lose work so he has no choice to keep going.  They have a 17 yr old daughter and a 21 yr old son both at home, one getting ready for college...it's a hard time for everyone especially to maintain everyday life.

I was in the hospital because I had a cebaceous cyst in my breast that apparently burst and caused an infection that put me in the hospital.  At first they did not know what the infection was so they were treating me for MRSA.  I had to have the infection surgically removed and the wound was left open needing to be packed twice a day.  It was overall a painful thing but I am healing very well and much better now. The lump started out very small and grew to the size of a small plum within a weeks time. I was a wretched mess until they got the results, even after they assured me it was not cancer.  This was all during the time my aunt discovered she had cancer so needless to say I was paranoid.  

[Jan214]

Okay, i am starting to understand a little.  You'll have to forgive me as chemo brain reduces us to idiots at times.  How did they diagnose OvCa?  You mention the stomach lining and the outter lining of her rectum, but you hadn't mentioned the ovaries.  How big are they?  When I had my CT they measured how big my ovaries were and they were a good size.  Every woman on here can tell you how big her ovaries were.  That is usually something they tell you, because if you have ovarian cancer the ovaries increase in size either from the cancer being  totally inside (20%) and expanding or from growth on the outside (80%) and enlarging the ovary that way.  I was in the lucky 20% and all my cancer was inside the ovaries, but they were 7x normal size.  
It makes sense that she could have had it a long time without knowing about it.  Looking back I know mine started around June 2005 and I was not diagnosed until Sept 2006.  I felt fine except for what I thought was a hernia toward the end.  
That is very sad about your uncle being so upset by this. It is hard on the spouses as they can feel helpless.  I am confused about that though because you said they didn't find out until Friday about her having cancer and did he go to work Sat as a salesman?  You said he was throwing himself into work because he has been crying so much so what was going on before they found out about the cancer that had him in tears all of the time. I am sorry but that has really confused me.  I wonder sometimes how much my husband cries over this when I am not around.  
So, what did you just get out of the hospital for?  It is not a great time for your family huh?  Well, good luck to you all.
Jan

[mariaaci]

We wondered if years ago when she was 29 she had been diagnosed with endometriosis and had a hysterectomy if that had anything to do with her getting the ovarian cancer?  I've heard women that took estrogen later came up with cancer and my aunt was on estrogen after the hysterectomy.  The MD said no, the endometriosis was unlikely to have had anything to do with this new condition.

He also told her that he suspects that she's had this cancer for about 2-3 years already.  I'd like to go with her to one of her appointments to ask the doctor's myself more detailed questions I can write down the answers to do my own research for her like what types of medicine and treatments are they planning to do for her, all the tests she's had done, her blood counts ect.  I just got out of the hospital myself a week ago and I probably made the doctor's dizzy with all the questions but I didn't care I wanted to know everything in full detail.  I think things are happening so fast with them that they haven't had a chance to take notes on everything and just focussed on whatever was gonna make her better was all that matters.  

[mariaaci]

We too found this bizarre especially since my aunt is running to the doctor's the minute she gets a runny nose.  She'd had blood work done and nothing ever was suspicious.  I'm not exactly sure all of the tests she had done but she had a regular ct scan at first, then they sent her for an endoscopy and colonoscopy and finally that full body scan they hooked her up to an IV and put dye or something in there.  I don't know much about this stuff so I apologize for not knowing the medical terms but I'm trying to give you enough info to understand what's been done.  That full body scan took 5 hours.

They talked about going after the first doctor who operated on the neck and said the first biopsy was not cancerous but it's so hard these days to get insurance companies to hold the doctor's responsible for their mistakes.  I think at this point they are just happy someone found the source and is able to hopefully treat her to save her life.

[Jan214]

I don't get the part about having every inch of her body tested and nothing showed until the full body scan.  What tests did they do that didn't show it but a body scan did?  The standard tests, TVUS, CT's, PETs all would have shown that much cancer.  Did they do a CA125?  I just can't imagine a Dr telling someone they have stage 4 without surgery to determine staging and I sure wouldn't go to an onc that talks percentages.  Most of them RUN from stats and don't want us looking at them either.  My onc knew from my CT and TVUS that it was a "late stage" cancer, but he didn't tell me a stage until he had done the surgery.  I have chemo brain these days so maybe I missed something in all of these posts.  What other tests did they do?  Have you gotten a copy of the original paths from the 1st neck biopsy?  Swollen lymph nodes don't go from clean to cancer and I would have that Dr in court.  Sorry for the questions but this sounds kind of bizarre even with some of the wild stories I have heard.  I guess I am just lucky with the onc I have.
Jan

[PF_PVD]

I agree with Marty that this is very curious.  I still don't get the ovca diagnosis just from the scan and what sounds like a lymph node biopsy (I also had cancer in my neck lymph nodes).  I was diagnosed without surgery, but I had pathology on a D&C and on ascites fluid confirming malignancy of the endometrium before starting chemo.  I hope you ask her oncologist lots of questions and if you need help with that, this is the group to suggest some.

[mariaaci]

Here's how it all happend.  She initially found a little lump on her neck and a surgeon went in to remove it, did a biopsy and said it was clean.  A few weeks later she complained of having trouble swallowing, said it felt like something was "blocking" in her throat so she went to a ear,nose, throat MD who said it had nothing to do with the neck issues; believed to be acid reflux BUT he looked at the incision on the neck and found it to look "unusual", when he felt it he said it appeared the 1st MD did not go deep enough because he could still feel something he was not comfortable with.  He sent her for more tests, and went in with another surgery on the neck to go deeper and did another biopsy- this one was malignant but she was told this was not where the cancer originated and more tests would need done to determine where it is.  She had every inch of her body tested and nothing showed the cancer until that full body scan.  

Now she is in the care of the oncologist who told her that she was VERY lucky to have noticed the small lump on the neck to get her to see a doctor; otherwise she could have gone undiagnosed and it would have been too late.  She had no symptoms, still doesn't. In her mind she feels healthy. I'm wondering if she's in shock, denial or just strong as a rock?  

[PF_PVD]

I too was told I had too many tumors as well as distant metastases (stage IV) for surgery.  What they did is give me three chemo tx which reduced my tumor burden enough to operate where they got all except microscopic disease.  Then I had three more tx intended to get rid of the microscopic disease.  I know this is not an uncommon procedure and can be quite effective and maybe what they have planned for your aunt.  Unfortunately, in my case I had a very good response to chemo but starting recurring within about a month.  However, all of this bought me a lot of time and much of that good quality of life time.  I just had another surgery and will resume my second line of chemo, and I do not feel at all hopeless about the future.  I don't realistically expect I will ever be cured, but I still can do a lot of living in the years to come.  There are so many drugs to try and I have a lot of people caring for me including good doctors.  I am glad your aunt has such a caring family, as a strong support system is a vital factor in the process.  My very best wishes for her recovery.  Paula

[PaulMD]

Hi there.

I'm really sorry to hear that the cancer was caught at this stage.  I hope she can handle her chemotherapy well since ovarian cancer even at its late stages can still be treated effectively.  Ask her doctor about supporting drugs such as Filgrastim and Erythropoietins, that can be given (if applicable) to help her withstand the side-effects of chemotherapy.  Stay strong, especially those of you around her.  Keep her motivated.  Keep us posted on her developments.  

Regards...

[SimplyStar]

I guess I am just curious on how they made a dx of OVCA with just a  "full body scan", usually it takes a biopsy of tissue  removed during surgery, also the staging  is usuallly only done during surgery. Did you receive any type of  a pathology report? Is your aunts doctor an onocologist?  .Usually no doctor will give a percentage of "cure"   as there is absolutly no way they can know this. All you mention is the stomach  and rectum  outer linings,  very rare.  Sorry I have so many questions  but I am just interested in this unusual way of handling OVCA.   Marty

[Helmar]

Hi Maria...Maybe they will operate on your aunt after the chemo has reduced the tumours. This is an alternative way in treating this cancer for some women. It sounds like your aunt won't need a book to inspire her... it seems that she is a very strong lady within herself, so she certainly has the right attitude to fight this, and good for her. When I'm doing chemo I read the newspapers, and do crosswords... and that gets me through the infusion, plus I 'stuff my face' with sandwiches, tea and fruit. :-)
I wish your aunt all the very best in coming out on top of what lays ahead of her.I hope she gets good news, and all goes well for her. I feel sorry for your uncle.. it seems that he is not coping too well, but when your aunt gets some good news, hopefully he will feel much better too.  Hugs...Helen...

[vegas2cr]

Please go buy her the book by Debra jarvis called "Its not about the hair". I am also a stag Iv diagnosed April 07.  I needed 6 rounds of chemo before my surgery which sounds like what they are doing with your Aunt.. One word of advice please don't smother your Aunt.. if she requests some time alone give it to her.. best wishes.. Ronni

[mariaaci]

Thank you so much everyone for the positive encouragment.  Our family is very close, we get together very often and live close to one another.  I am self employed so I have already told her that I will be able to come help her regardless if she needs me or not.  We've all worked out arrangements to make sure she is never home alone and so that the rest of her family can try to function as normal as possible.  Her husband is not doing well with this at all.  He told me tonight that the only time he manages not to cry is when he is working because he's in sales, talks to people all day long and it gives him a chance to escape his depression.

I asked them tonight if the Dr. was talking about any surgery and they told me that he said there are too many tumors so operating was not an option.  I'm not sure if he meant right now it's not an option until the chemo kicks in or if he meant it's not an option ever???  She's handling this all very well.  I haven't seen her get angry, cry, or show any sign of fear.  It's quite remarkable as I know myself I would not be so strong.  She's quite the inspiration to me.  I'd like to get her a good positive book to read while she is having her chemo done.  They told her she'll be there for 5 hours and she can read a book, watch tv or do a crossword puzzle ect.  If anyone can recommend a good book maybe a cancer survivor story I'd appreciate it.  Thank you all again so very much for your kindness.

Maria

[crecco]

I am so sorry for the news you recieved today. Yes it is very hard. I too was dx stage IV in Nov 05, and I still remember it like it was yesterday. The very first thing to remember is that a diagnosis of cancer does not mean an automatic death sentence, not any more. The later stages of ovarian cancer are now being treated more as a chronic disease. Which means there is no cure but it can be treated and managed for long periods of time. If they are starting your Aunt on chemo Tues, then they must have decided to do chemo followed by surgery. Some Drs feel that they get better results this way. I also had chemo first, and by the time they did my surgery, there was very little visible cancer that they had to deal with. Remaining positive and deciding to fight are two of the most important things that all of you can do. Like one of the other women above, I have been on chemo non stop since I was dx. And I know, that does not sound the least bit pleasent. But a long time ago i just accepted that it was a part of my life now, and if that is what it would take to keep me around then that is what I will do. I still live on my own and for the most part take care of myself. Grnted I have my good days and my bad days. but then so does everyone else, whether they have cancer or not. I do not have the energy that i used to but we learn to make adjustments.
And another thing many of us have learned, we pay no attention to the "odds of survival" because each of us and each case is different. So we all have the chance of being in the percent that does just fine. I was very depressed at the begining until I started reading the stories of survival, and there are so many of them, that I figured why not me too. I have seen women with stage IV still here after 12 and 13 years, with no recurrence ever (and told they had less than a year) and have also seen women with stage I only make it a few months. So leave statistics out of it. Just the answers you have recieved here should show you that.  I also agree that you should bring your aunt on with you. There are so many wonderful women here of all ages that give so much care and support and many of them are full of all kinds of knowledge. I am not real computer smart either but i did find my way here and am so glad that I did.
  Hang in there. I know that this is a very scary time for you and your family, esp your aunt. But there is hope and you must remember that.
  I wish your aunt the very best, stay strong and stay positive.
       Chris

[butterflytc]

sorry for the news you and your aunt rec'd today. I know it is overwhelming to handle in the beginning, it will come in time. As for support groups..most cities have an Ovarian Cancer chapter, call your local American Cancer Society to find locations near you. When I had my chemo, I was given a booklet telling me all the different places I could call. Hopefully her chemo nurse will be able to share this info with your aunt. keep us posted, and perhaps since your aunt is computer challenged you could print out the info you would like her to read from your postings? just a thought
((hugs))
butterflytc

[Shari4444]

Oops, Mariacci, missed that your Aunt is computer challenged...just go with a local support group. Or, you could go on line with her, so she could see this forum.

More Hugs,
Shari

[junamgen]

I'm so sorry about your aunt.  I totally understand what you and your aunt family are going through right now.  But I'm very sure that your aunt will be here for a long long time since there are so many chemos we can have., plus 47 is very young and strong to fight this beast.    I think she will really appreciated if you can do a lot of research on chemo she is going to have, such as side effect and how to deal with them.

Is she going to have surgery after chemo?

Anytime u have questions, u can always come back or ask your aunt to join us too.  We are here to suppor for each other weather u are a patient or a care giver.  
best wish!

Peace
Jun

[Shari4444]

I would check with your Aunt's doctor's office for a support group in your area. aren't all the ladies on this forum and their support and information great. If your Aunt has a computer, she could always come on the forum, too.

Hugs, again,
Shari

[Aussie000]

I'm sorry you are going through this,  I know exactly how you feel, my mum is stage 4 and was operated on back in 2005, after chemo she had a 2 year remission then the cancer came back so she had another operation 5 months ago, the surgeon couldn't get all the cancer so she has been on chemo again and is due to finish next month, so far her CA125 is down to 8 and the oncologist is thrilled that she is at that level for a stage4.

Are they going to operate on your aunt?  there are so many different chemo's to try, some are better than others, it really is trial and error with chemo.

Your aunt needs to remain positive, my mother does and refuses to give in to this hideous disease, she meditates every morning and does visualisation techniques, the oncology section of the hospital would be able to help with books and information.

Just tell your aunt to fight this, the longer she does the better her chances are. They told my mum she had 6 months to 2 years to live and now we are into the 3rd year with a low CA125 result so she is doing better than we thought and I know her positive attitude counts for alot, other stage 4 ladies have passed the 5 year mark, let us know how she gets on, all the best. Carolyn

[Helmar]

Hello... I'm sorry to hear that your aunt is facing this wretched cancer, but try and look on the positive side. I was dx Stage 4 in Feb'04 and I'm still doing o.k. although I've been on chemo most of the time. I still feel really well, and lead an active lifestyle...travelling, and doing the things I like to do, so all is not lost. It sounds like your aunt has a good attitude, which I feel is needed to fight this disease. No point sitting in the corner, moping about it, as once it's there, we can only fight to try and beat it. If the cancer can be controlled with chemo, as mine is, then it's deemed as being chronic, and we can go on for many years. My Oncol. has a couple of patients...one is a survivor of 12 years, and the other 16 years, and they were both Staged at 4 too.
I wish your aunt all the best, and I'm sure she will have many years to enjoy her family, and life in general. hugs...Helen...

[karikay]

Sorry to hear your family received this news.
I am not a doctor, but I am another family member of an ovarian cancer patient, and here's what I can tell you:
Most of the time with ovarian cancer, doctors prefer to speak more about putting the cancer into "remission" rather than "curing" it. The good news about ovarian cancer is that a very high number of women go into remission with the first line chemotherapy, even if the cancer is very widespread.
The bad news is that most of the time ovarian cancer will come back at some point after that first remission. HOWEVER, one thing I want to say is that even then, the situation is not hopeless. There are women out there who live with ovarian cancer for years - never cured, but keeping it under control with chemo.
Ovarian cancer is very sensitive to chemotherapy compared to other cancers, so there are a lot of chemo drugs that can be tried in order to control it even when it is advanced.
Last spring, my own mother was diagnosed with very advanced ovarian cancer - so advanced that when the surgeon opened her up he
decided it was too much to even attempt to remove any of it. At the time we were devestated by the news and thought the future was bleak.
However, here it is a year later, my mom is still alive and doing well thanks to chemotherapy.
You may also want to read about clinical trials and ask your doctor about if he knows of any for ovarian cancer patients like your aunt. With all the research on new drugs out there, there is lots of reason for hope!

[mariaaci]

Thanks Shari.  I'd like to get her some support from people in the same situation as she is in.  She's not too computer internet savy.  Are there support groups she can attend in our area to help the whole family get a better understanding of what's ahead?

[Shari4444]

Oh, honey, I'm sorry about the news you have received. You've come to the right place. The ladies, here, are full of information. I can tell you that a positive attitude is VERY important. That is hard to accomplish when you first hear the scary news. However, as you, your aunt, and the rest of the family glean more information and start to understand her treatment plan, you can all pull together for a positive outcome. I'm sure more ladies will be on, briefly, with more information on exactly what you and your family can expect. Until then, just breathe. Take care and keep us informed.

Hugs,
Shari