CSN Login
Members Online: 10

Mom VERY recently diagnosed

lisazee
Posts: 12
Joined: Nov 2009

Hi everyone,

I'm so happy I found this site. My mom went to the ER last Tuesday with swelling in her abdomen, which a CT scan revealed to be ascites. They drained 5 liters of fluid from her, and after testing the fluid and taking a second look at the CT scan they diagnosed her Friday with cancer, most likely ovarian or peritoneal. The docs are saying they will know more tomorrow or the next day as to which type of cancer. They are also saying something like taking a week or two to get a consult with a gynie surgeon. Is this normal? How should this be going? What is a "normal" timeline here? Everything I have read about either of these cancers says that they are well-advanced by the time they are diagnosed. Why are we waiting weeks for appointments? We are in the Chicago suburbs for reference.

I have to admit this is the first major health issue in our family, so we have no idea how "pushy" to be, who to trust, where to go, what questions to be asking, etc. Can anyone offer any suggestions of what SHOULD be going on - to either ease my concerns or light a fire under us?

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Lisa,

My mom was diagnosed in Feb with Ovarian 3-c, so I've learned a lot in the last few months. It is an excellent move to wait for an appointment with a surgeon who specializes in ovarian cancer, even if it means waiting a couple of weeks. Depending on the type of cancer, location of activity, extent, etc., surgery could be done quite soon, or the tumor(s) might be treated with a short course of chemo first. It's important to remember that ovarian cancer generally moves very slow, so there is time to do things right.

Can you go with her to meet with the new doctor? BTW, you there should be several specialists in Chicago-land, but they're not around every corner. In my mom's city of 300,000, there are only three surgeons who specialize in OC.

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

There will be many tests and waiting for the results. Ovarian and peritoneal are similar and the treatment is about the same. There is a better survival rate in having the surgery done by a gynacologist/oncologist and in a large teaching hospital. The more experienced the better! Mine was discovered with a CT scan and was Stage IV shown by the spread to the liver in March, 2007. I have never had ascites yet in this journey. There will be a CA-125 blood test that tests for cancer antibodies and will be a marker to see how the treatment is working. Mine started at 2999 (normal was below 35) and after 8 chemos and surgery was below 10. I had four doses of chemo before surgery because my tumors were so widespread. The consults moved pretty fast as they knew that is important here in Texas, but it seems slow to me. I had my first dose of chemo within 3 weeks, a portal installed in my collarbone area for the IV infusions, and gyn/onc physical. You can click on my picture to take you to my story on treatments etc. You have found a good site and we have several daughters posting here. (((HUGS))) Saundra

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

It is very encouraging to read about your journey. I have only just begun mine and am quite frightened. I have been told today that my CA-125 is just over 1,000 which means nothing to me but I was told it is quite high which really frightened me. However, reading your blog has given me hope as yours has come down after treatment.
I am from the UK so things will be a little different over here. I have Peritoneal cancer. I haven't been offered surgery as I have no specific tumours. I will be starting chemo next week so my cancer can be "managed" and hopefully my CA-125 will come down the same as yours.

I hope your treatment continues to go well. Take care Tina x

bonnie thomas
Posts: 36
Joined: Nov 2009

tina seen your letter just wanted to say your ca125 will come down . mine was 1640 and with first chmo came down to 600 and with every one came down more. then went on study drug for 9 months and got sick not bad and was off drug for 3 weeks and the ca grew a little and marker went up some , i am a nursing assit and worked in the cancer field for 20 years i even worked at the place where i go to see the drs . i know alot about the blood work and ca125swhat chmo are you going to take let me know ok . god bless you
bonnie

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Thank-you for replying. I am due to start my chemo next week and will be on Carboplatin and Taxol. You have reassured me about the cancer marker as my doctor said mine was high - but I didn't know how it compared to other people.
Take care Bonnie and I hope you do well with your treatment. Keep in touch xxxx Tins

Mawty's picture
Mawty
Posts: 137
Joined: Sep 2009

Hello, I read about your mom's diagnosis. I found out about my 3C ovarian cancer last year at this time. Everything went pretty fast. My regular doctor took a PAP smear and it came back irregular. She sent me right away to a gynecologist who did a biopsy, and I found out that week i had cancer for sure. Then I was sent to an oncological gynocologist at Rush - Edgardo Yordan. Rush is a teaching hospital, and they have a specialty in gynecological cancers. I had my hysterectomy and chemo there. Hope this helps. Rush is a great hospital.

Marty

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

My mother was diagnosed on 7/25th this year with 3c ovarian cancer. It was terrifying, but I have learned that there is lots of hope and treatment available..Yes, be pushy (assertive) and be an advocate. Most important: be sure that your MOm is seeing a gynecological oncologist AND be sure her surgeon is a gynecological oncological surgeon. This is HUGELY important. If you want to come to Mayo in Rochester MN I can give you a name of head of gyn/onc there. I would say get her in as soon as you can so they can determine whether to do chemo first and surgery second or other way around. Also, please know that there are very many people here who care greatly. It's an interesting mix of women who are ether taking care of moms or have the disease and there is so much to learn from all of them. You are in my prayers tonight and I understand that you still need Mom...I do too. There are people on this board who have been here a very long time....with their OVCA. It's treated more as a chronic illness these days. Just please please get a good doctor!! That makes all the difference...Sorry to meet you this way Lisa.....please stay in touch and let us know how she's doing..

lisazee
Posts: 12
Joined: Nov 2009

Thank you, everyone, for your kinds words and sharing your knowledge. I feel better about her waiting to get into a specialist. I do know they are talking about someone at Rush, which was mentioned, so that makes me feel good. I do plan on going with her to her consult - I assume the more ears, the better. Still no word on whether it's ovarian or peritoneal... I was surprised they would know that for sure prior to surgery, but I guess they can tell lots from the fluid they removed. I had no idea they may do chemo before surgery, so I am learning lots already.

I am so glad to find a community with positive outcomes and real-life experiences. The internet in general is full of info that is scaring the bajeezus out of me, so I am going to try to stay on sites like this from now on! Thanks again for the warm welcome, even under these circumstances. I hope I can help someone out sometime like you all have helped me. :)

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

It is almost a necessity to go with your Mother to take notes, write the questions down ahead of time. There will be lots of information coming that you can't write down yourself on the exam table!!!! My husband goes with me every appointment to make notes. We refer back to them often. Start a notebook!
Saundra

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Yes, the internet is scary, but remember the internet is just information and real life is totally different. I feel like I need to emphasize what Saundra and Bonnie have said about always having someone go with your mother to take notes and advocate. What I have found is that the more ears the better the information. Take notes as the chemo information initially is a bit overwhelming, but the women here can answer so many questions if you get into a pickle. Also, write down questions that come to your mind, that way you don't have to worry about remembering them. But, at this point, I would say, our mothers need us to be eyes and ears. I have come to learn that my mother, sister, and I are a team. We each bring a unique but important perspective to the team. I am great with stats and research. My sister with advocating with the doctors. My mother with communicating her needs and thoughts and feelings. This board is a huge resource for support and understanding. No matter what, this is the beginning of a new journey for you and your mother. Although it may seem a bit overwhelming right now, you will move through that and enter the fighting process. we are all here for you and your mother.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am actually from the UK but I think cancer is the same the world over. I have Peritoneal cancer and it took the doctors a few weeks to confirm the diagnosis. Doctors are often quite reluctant to give you any information until they are absolutely 100% sure of the diagnosis so don't worry if you think they are being evasive - they aren't.

The info on the Internet is not always a good thing to read. Peritoneal is a rare cancer so there is not much known about it.

I was only diagnosed with my cancer last wednesday so I still trying to come to terms with everything. Keep in touch and let me know how things go. All the very best of luck Tina xx

cehjames
Posts: 5
Joined: Dec 2009

new
hi there, i live in London in the UK and my mum was diagnosed late October with primary peritoneal cancer. her NHS oncologist started her straight away on carboplatin, 6 treatments each 3 weeks apart. we went to a private oncologist (highly recommended at the London Oncology Clinic in Harley Street) for a second opinion because we also have private medical insurance.

The private oncologist said that he agreed with carboplatin as the best treatment, but that as PPC is a diagnosis of exclusion she should have had tests done to exclude the primary site being elsewhere (bowel, stomach or breast). i asked him about the IP chemo and the use of taxol in addition to carboplatin and he said that the IP chemo is not proven to be effective and if the carboplatin does not get rid of it then they will try taxol next. BUT on all the american sites where people have posted comments i have been onto trying to research this disease people seem to talk a lot about these two things:

Combination therapy with taxol and a platinum chemo either carbo or cisplatin as a first line therapy seems to be the standard in the US
AND
A combination of IV and IP for either/both of these drugs.

SO -My question for any of you amazing ladies on this site is: why do you think the standard first line treatment is different in the UK and the US? i cannot understand why it should be different here. Also, they said that as my mum is stage 3a, there is not really any point in surgery because the bits of cancer are too small. i am hoping this is a good thing! Tina - what hospital are you at if you dont mind me asking?

we are all keeping positive and i am making sure that she does not just sit at home and fret. a puppy is my next idea...

thank you for any thoughts you may have that can help me get the very best treatment for my wonderful young mum who is just 59.

Clare

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am attending Nottingham City Hospital and I had the first round of my chemo last Friday. Like the US I am receiving carbo-taxol as my oncologist said it was the "gold standard" for PPC. It is interesting what you say about the differences between the USA & UK because in the US a lot of ladies talk about having "de-bulking" surgery and when I mentioned this to my oncologist he talked a lot of technical / medical jargon which basically meant it is not standard practice in this country.

You are right about surgery to remove the tumours - there aren't any with PPC. It is just made up of abnormal cells which should respond to the chemo by being KILLED OFF :) I am lucky as my CT scan didn't show any tumours on any major organs, however I had ascites in my lungs so the little buggers had passed over my diaphram and settled in the pleural cavities around my lungs.

So I am being positive as you should also because the chemo will go in the bloodstream and kill off all the bad cells. The doctors like to keep reminding me that it is not a cancer that can be "cured" BUT it can certainly be kept in remission.

I really hope your mum responds well to the chemo as in my first week I have only 2 days where I have been only slightly un-comfortable.

Let me know how your mum gets on I will be thinking about her.

Tina (by the way I am 49)

groundeffect
Posts: 651
Joined: Mar 2003

Hi Clare,

The questions you asked about IV and IP treaments are valid. I was first diagnosed 7 years ago, and had IV carbo/taxol after my surgery. My OVCA was staged 1C. After I had surgery in September this year for removal of a small, well-defined ovarian cancer tumor, my oncologist recommended that I have follow-up chemo. My chemo doc is following the current protocol of the University of Pittsburgh Medical Centers, which is IP taxol and cisplatin. It is my understanding that this is considered a more effective way of delivering the drugs because it puts them directly into the abdomen.

That being said, I will explain it's done over three days: Day 1, IV taxol. Day 2: IP cisplatin. If Day 1 is a Monday, the next Monday I have IP taxol. They all take at least six hours to infuse, so it takes a lot longer than the initial IV therapy that I had. They also have me rest on my left side, back, and right side at 15 min. intervals during the infusion of saline IP when the cisplatin is done.

I had the good fortune of spending time with a woman who had more than 12 years of good health after her treatment with IP chemo, which would have been in the early '90s. She didn't know what stage she was when she was diagnosed with OVCA, but was treated at a UPMC hospital. I suppose the delivery methods have changed considerably since she was treated, but I am glad that my oncologist recommended IP treatment for me, and even more glad that I was able to arrange it to be administered locally (the oncologist is 120 miles away).

Good luck, regardless what happens!

Sue

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

At the age of 41 I was diagnosed with stage IV ovarian. After debulking surgery I had 5 rounds of IV carbo and taxol 3 weeks apart. I then had an IP port placed and recv'd 3 rounds of cisplatin IP and taxol IV. Despite all of this I just had my first reoccurence being out of chemo for 8 months. BAH HUMBUG!

Oh, and I did get a puppy too. Just added more work to my list of daily chores :-) My two young kids love him though!

bonnie thomas
Posts: 36
Joined: Nov 2009

hi i have ovarian cancer i had 6 chmo before they took every thing out i did great on the chmo had aboout 7 days of no eating good tired but nothing i could not handle. i still have a little cancer there and am talking chmo i am going on 19 months i wokked in the cancer field for 20 years and have seen alot , may god bless you and your family write any time i am praying for yall.
bonnie

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Just chiming with the prayers, the others have given good advice. Pushy is good and gyn/onc surgeon is is worth the wait as they are the best for ovarian cancer. Sending lots of prayers for peace ~ patience and healing. Hugs ♥ Prayers Bonnie

ladyjogger31's picture
ladyjogger31
Posts: 291
Joined: Mar 2008

I'm also chiming in with the others also. You have gotten some good advise.Make sure and have someone there to take notes. I had my 2 daughters and it was a good thing I did. And having the best Gyn/Onc is real important. Start a journal.
Sending you lots of blessings.
Hugs and Prayers,
Terry

lisazee
Posts: 12
Joined: Nov 2009

Hello ladies! My mom had her consult yesterday at Rush. My dad went with her.

The gynie oncologist seems to think it is stage 3 ovarian. He says her the rest of her organs look good, which makes me feel better. I am hoping he wouldn't say that unless he had a reason, no? Why give people false hope? Who knows... Anyway, he says surgery the first week of December and then "probably" chemo.

Thanks again for all of your kind words as well as words of wisdom. I will keep everyone posted as I hear more. :)

pullingforlou
Posts: 7
Joined: Nov 2009

I am in Chicago as well. My mother was diagnosed with stage 3 in 1997. Nearly 13 years later she is still here so stay positive.

cehjames
Posts: 5
Joined: Dec 2009

hi there, thanks for giving me hope -my mum has stage 3a and i cannot stomach the thought of her not being around for my kids to know as they grow up. pretty selfish as she is the one going through it, but its just not her time yet. i am trying to find out everything i can about PPC but its not easy is it? still I can be pushy and demanding, so thats what I try and be when we go to the doctors.

good luck to you all

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network