I have just days ago been told my 29 yr old niece has advanced ovarian cancer. She has already had a CAT scan, ultra sound, biopsy, and blood tedt done. She has been put on several cancer medications, along with anti depressant, and pain medication. Severe abdominal pain sent her to the emergency room and initiated these test. They told her after the test that she had an advanced stage of ovarian cancer. But her paper work says stage 2. Is this advanced stage??? I read about stage one then it always jumps to stage 3 and 4. And they have now scgeduled another altra sound test for 25th to then be followed up with consultation. I am soo scared I have helped raise this niece and she is like my daughter. What do I do?? How do I support her from here??? Please help I feel so unimformed and helpless....
Aunt donna
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Scared
- By auntdonna
- Posted August 16, 2009 at 11:48 am · 17 replies
- In Caregivers and family members
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- By Patricia123
- Posted August 16, 2009 at 11:54 am
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It is very scary. But has she had surgery and if not why not? Where are you located.
This is the worst time but it will pass.
Just focus on the need for a gyn oncologist for surgery,,best results from them. Not a regular gyn surgeon.
- By auntdonna
- Posted August 16, 2009 at 12:02 pm
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This is my concern I live in wisconsin and she lives in Bethalto,IL. But I plan to be in Illinois as much as I can and as often as necessary to Support her.
We just found out about this diagnosis as my niece waited for results to tell the family of her medical problem. But why the Dr's are not doing surgery asap and why the 2nd ultra scan first I do not know. I knew nothing of Ovarian cancer till I begun researching it yesterday via the internet. And what I am reading is sooo alarming .. I plan to be at the consultation after this test results come in but why they are waiting and doing this test prior to consultation with my niece and family I do not know. I will move there if necessary to support her but I have no clue what she is about to embark.
- By Patricia123
- Posted August 16, 2009 at 12:10 pm
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I know it is terrifying but sounds as if they are getting ready for surgery?
Sometimes they repeat scans if they don't see what they need to see.
Sometimes they do surgery first, sometimes they give chemo first to shrink tumors to make surgery easier.
As long as a gyn oncologist with experience with OVCA is on board, they usually follow a protocol that is pretty basic and straight forward.
And while OVCA is alarming, it neednt be a death sentence or gruesome. Some live with it sort of chronically and get chemo from time to time.Others have long remissions. Everything has changed since Gilda Radnor had it.
Gathering information is a good thing and will be helpful to her. Keep us posted.
- By auntdonna
- Posted August 16, 2009 at 12:15 pm
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Thanks and any suggestions I can pass on to her is so appreciated. I did read the Gilder Radnor site and the statistics has kept me up at night and nausiated myself. I know a positive attitude is a major part of this whole process and your words helped me so much to hear someone say positive things right now is helpful.. Again thank you..
I know I will be a major part of her caregiving and support as she does not have a large family and anything that will help guide me to guide her is welcome....
I am already glad i found this site and stopped reading statistics.
Thanks
- By khollett
- Posted August 16, 2009 at 12:45 pm
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You are wise to stop reading statistics, especially on the internet. Alot of times these stats are old and inaccurate. If you need to get information go to a reputable website such as Web MD. I was diagnosed in the 2003 and I am doing fine. This can be a very serious life threatening disease, but it is treatable. It doesn't sound like all of the facts are in yet. Usually after surgery the docs have a better sense of what is going on. They can visually inspect all of the organs, take samples of lymph nodes and determine the extent the disease has spread, if it has. It is usually after this that they determine the stage. The most important thing is to make sure your neice has a gyn/onc doing the surgery. These doctors do nothing but treat gynological cancers, and believe me they know what they are doing. The hardest part of all this is dealing with the initial diagnosis, but again, once all of the facts are in from the surgery and pathology you will have a much more accurate picture of what is going on. Keep us informed.
Kathy
- By jeaniet
- Posted August 16, 2009 at 1:23 pm
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Yes, the stats are scary. Most of us are diganosed at Stage 3 or 4. Stage 2 is not considered advanced disease. But ususally they won't know her stage until surgery, when they will "stage" her after seeing where the cancer is, and where/if it has spread.
For a lot of us, the surgery/recovery was not as bad as we had feared. She is only 29, so that will help her recover faster, I'm sure.
Chemo is scary too, but if she has Carbo/Taxol as her drugs, which is usually the first line choice, then she will probably get through without too many real difficulties. There are some common side effects, but those are usually not too bad. If she does Taxol, she will lose her hair. Most of us got through chemo pretty well too. Nausea, if she has any, is well controlled with meds. I never had one day of nausea.
so, take a deep breath, and wait for more info. It isn't a death sentence.
and make sure she has a gyn/onc!
Jeanie
- By auntdonna
- Posted August 16, 2009 at 1:29 pm
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Thanks all this info is so helpful to me. I am afraid i seen a statistic saying 20 to 25% 5 yr survivor rate and my heart fell and I have been nausous myself ever since. I was having a hard time seeing a positive side to this journey she is about to approach.. This has helped tremendously!!!
- By jeaniet
- Posted August 16, 2009 at 1:36 pm
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Yes, for advanced disease the stats are grim, but there are plenty of 5+ year survivors on this site!
Yes, for advanced disease the chance of recurrence is very high, but they will just keep treating with a different drug.
So, she might have to learn to LIVE with cancer, but if you and she read this site, you'll find many people are doing just that.
Jeanie
- By Shearaw
- Posted August 16, 2009 at 7:36 pm
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auntdonna, I'm so sorry for your niece's diagnosis. She is very lucky to have you in her family. I think that this is one of the best websites to come to for support and for anecdotal information. we all try to help each other in this way.
I want to echo two of the other recommendations that others have made. 1) It is most important to get a referral to a gynecologic-oncologist to do the surgery. These specialists have the most experience at looking for and removing the greatest extent of gyn cancers. A study was done to see if this was the case, and the statistics for time to recurrence and for survival are noticeably improved for surgery done by gyn-oncs. Also, a gyn-onc will be best prepared to address the possibility of future childbearing with your niece. So, please make finding this specialist one of your niece's top priorities.
2) If you want internet-based information on this disease, go toreputable websites. WebMD was already suggested. For starters there is good information on the Johns Hopkins, Memorial/Sloan-Kettering, and Mayo Clinic sites. Also, the National Cancer Institute website Has much good information.
Our prayers are with you and your niece. I hope that this journey has few bumps for you both.
- By FavoriteAunt
- Posted August 17, 2009 at 8:08 am
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First of all, I'm sorry your niece has to go through this but she is very blessed to have an aunt who cares so much for her. That will be a very big help in her fight. Absolutely do not read statistics. We've all done that and have learned to stop. Most of us here have late-stage ovca and still here talking to each other!
I'm assuming your niece has not had surgery yet because they really cannot stage her until then. Whatever it is, be sure she has a gyn/onc. do the surgery (the survival rates are proven to be higher). She'll get her chemo and hopefully be fine. Yes, advanced ovca has a high rate of recurrence, but there are many chemos available to treat it. We know, because we've all had them. If one doesn't work, we move on to another.
Try to keep her positive and let her know there are plenty of us survivors out here - rooting for her to join us. Sending all good wishes to both of you. Let us know how things go.
- By auntdonna
- Posted August 17, 2009 at 10:24 am
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First i want to thank everyone who has responded to me so much your words and eperiences has helped me so much. I am angry that our country has not found a way to detect this cancer in early stages .. and that i was so unaware of this..
But I have another issue I will be dealing with next week when i go for my extended stay in Illinois, my niece was parmanetely laid off almost a year ago. She is working but has no Insurance at this new job. Will she be able to get good, well rounded care without Insurance???
A new worry ... and I am sure a lot to learn in this journey!!
- By FavoriteAunt
- Posted August 17, 2009 at 11:09 am
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Your niece will not get the care you envision without insurance. She needs to get something since ovca care is very expensive and could go on for years. Tell her to try Medicaid if there are no affordable options available to her. Also, tell her to try to get SS Disability - ovca is now at the top of the list of eligible diseases for Disability since it is considered life-threatening. It's NOT insurance, but could be a helpful monthly payment toward an insurance premium.
Talk to the social worker at her cancer center for help if necessary, but she'll need something. The costs per treatment are in the thousands, and that doesn't include the scans, lab work and possible future surgeries. It's nothing to fool around with. She might find someone willing to treat her, but she won't get the choice of the best doctors because many will not do that. This happened to my cousin (breast cancer) and she finally found an oncologist who let her pay as she could - she's still paying him 10 years later - but she did finally get on Medicaid and needed it for everything else.
This is very important and you should set the wheels in motion ASAP. Your niece is very lucky to have you troubleshooting for her. All the best.
- By auntdonna
- Posted August 17, 2009 at 6:31 pm
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Can they actually deny her the right to a GYN/Onc ???
Because she does not have Insurance?
She has been a single mother for about 2 years but she is responsible and has worked hard to take care of her son and herself. I am thinking maybe I best go sooner then the end of next week, I really dont know where to start in ensuring she gets the best care i can manage to get for her...
- By jeaniet
- Posted August 17, 2009 at 10:14 pm
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Why isn't she on Medicaid? I would investigate that as an option right away.
Unless she can find a Gyn/Onc to treat her for free, and a hospital willing to operate on her for free, and chemo for free, then I think she has a hard road ahead.
I am treated at a Univ (State) hospital, and everyone must have insurance or Medicaid.
Yes, she can be denied care. Legally I believe that the only time she cannot be denied care is in an ER, but they would just refer her to a Gyn/Onc. She would not be treated for OC in an ER.
I am so sorry that she is one of the ones falling through the cracks of our fabulous health care system.
How has she gotten this far in the diagnostic process without insurance or Medicaid?
Jeanie
- By Patricia123
- Posted August 18, 2009 at 12:21 am
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Can't a person back pay the premiums and get cobra for up to 18 months,,and the gov is subsidizing cobra for those who have been laid off.
A social worker would help alot!
- By auntdonna
- Posted August 18, 2009 at 8:11 am
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Sorry she is presently on Medicaid a social worker at the hospital, during her last visit for extreme abdominal pain and after all the test began, had her fill out paper work and apply tellin her she would qualify. I guess i miss spoke in the last reply. And now I feel bad for sayin medicaid is not Insurance, this is really not what I meant to say, I have just heard horror stories of people not gettin the proper treatment on medicaid versus outside Insurance. I guess i do not have a lot of faith in our government or state sponsored health care policies. I although am so grateful that there is something for her to fall back on. Since her divorce I have helped her out finacially and so has her mother but her mother has some serious health issues herself. But Amanda (my niece) prior to the divorce was a stay at home mom (husbands desire not to have outside baby sitters) She did get a factory job (good pay and insurance) right after the divorce but was permanately laid off before one year of work there. Since then she has worked as a waitress and many hours but always determined to stay independant and support her son. I have not had a lot of experience with medicaid will this pay for her needs. What about medicines I am sorry I just feel so uninformed I am going into this blind and ignorant.
- By auntdonna
- Posted August 18, 2009 at 7:02 pm
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My niece called me today and had to go to the cancer center for pain and excessive vomitting again. She said they changed her pain med to vicadin and a new nausea medicine. Her second ultra sound is next Tuesday and they want her in for more blood test again on monday next week. they have already diagnosed her with ovarian cancer why are they not in any hurry to do surgery, heck I want consultation with this Dr and they are not setting that up to talk to her about treatment (outside of the meds they have put her on) till well I dont know for sure , they just said after the results of these new set of tests are in. i just feel like we are wasting precous time......
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