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Whine time for me :(

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Just got my PET/CT report from early this week (which, btw, my gyn-onc was not inclined to order as I was asymptomatic, but I insisted). Up until now all recurrences have been in lymph nodes only. Today's report shows a lesion in my liver and multiple nodules in lungs, some new enlarged lymph nodes, other nodes reduced in size. My ca125 was only slightly up from prior in October. Feeling a little panicky. I have a call in to get an earlier appt as it is currently not until the 28th. I am ready to jump into chemo full bore now despite gyn-onc's reticence to treat before having symptoms. I take that attitude as an expectation that treating is a moot point just decreasing quality of life during the inevitable expectation of my demise. I consulted with another gyn-onc in Nov who may be more aggressive in treatment options and may schedule an appt with him as well for his thoughts on the progression of disease. I've just passed the 4-yr anniversary of my debulking surgery for UPSC Stage 4B and am determined to make it to my 5th! So that's my whine, probably just a little bit in shock right now as I did not expect such progression.

Ro, I hope your new round of chemo is progressing uneventfully. Mary Ann, thinking of you on your biopsy today and hope all goes smoothly.
Healing thoughts to all.
Annie

Ro10's picture
Ro10
Posts: 1453
Joined: Jan 2009

We are here to listen to you. And hopefully offer some support. Sorry to hear about your lesion on your liver, multiple nodules in your lungs, and enlarged lymph nodes. My doctor recommends treatment when scans sow something significant. Sound like the new findings are significant. I can understand you being shocked. Hope you get earlier doctor'sappointments to help put your mind at. Peace. We all know worry does not help, but do any of us rally know how not to worry?

He does not even get concerned about increasing CA125 results until the scan shows something. I have never had any symptoms before diagnosis or after diagnosis. Even with all the blood lots in my lungs I have had no symptoms. My doctor also said " unfortunately the symptoms of recurrence are NO symptoms.".

I think it is wonderful that you had a four year anniversary since your debunking surgery. I too want to see you make it to you 5 th anniversary also. Hang in there and take it one day at a time. Thanks for the healing thoughts. We all need those. In peace and caring.

JoAnnDK
Posts: 276
Joined: Jun 2011

Please please whine, Annie...this report SUCKS!!!!

Might I ask who gave you this report and was it over the phone, e-mail, or what?

It is so stressful to be "in charge" of our own surveillance of this horrible, ugly, evil monster. Like Ro said, how can we not worry? Every day, every hour, every minute is a time for worrying.

I especially worry that I am having CT scans and not PT scans, knowing that the PT scans shows up smaller things. My doctor says it makes no difference in the treatment, but I think he is wrong. Damn damn damn.

Please keep us informed and I hope you get an appointment early in the week.

JoAnn

Kaleena's picture
Kaleena
Posts: 1195
Joined: Nov 2009

JoAnne:

PET scans can be hard to get. Before I changed insurance companies, my new doctor had been ordering PET Scans which I was getting until I changed insurance companies. When I had my appointment in June of 2011, I was ordered to get my PET scan again, especially because I was on a wait and watch approach due to a lymph node which was removed in Feb of 2010 which had microscopic cells. However, the insurance company denied the PET and further I couldn't get it at the hospital where my doctor was because it was considered "out of network"[long story about that]. After several months of fighting, I was able to get a CT scan in October at my local hospital. Now my insurance company has included my doctor and his hospital as in-network. However, they are now cancelling me in April saying we don't have enough employees now.

Since I still have a couple of months here and I am going to try for a PET scan in March because I usually get scans every 6 months. We'll see what happens.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Hi JoAnn, I get my reports directly from the departments where the tests are done. I check at test time when the results should be available and just show up and ask for a copy of the results. I refuse to wait to have someone give their interpretation before I can review it myself and have the opportunity to formulate questions, do research, whatever seems necessary before I see the doctor.

The CT scans show way more detail - size, location, etc. of any abnormality. The PET shows whether or not there is hypermetabolic activity associated with the abnormality. Cancer is a busy entity hence shows higher than normal levels of activity -- the "hot spots" on the scan. My gyn-onc started with CT scans but when an abnormality showed up he ordered follow-up PET scans. Now that I am in a state of chronic disease, it is always the combo. If you have normal Ct scans and no other issues of concern, the CT scans may well be all that is needed. I had previously heard that when one got a PET/CT the CT was a lower level, exposing to less radiation but that is only if one gets a "PET scan" which includes a light CT scan for providing PET image with structural outline. I get full diagnostic CTs when I get a "PET/CT".
Keeping the 'worry level' down is always a challenge!
Annie

JoAnnDK
Posts: 276
Joined: Jun 2011

When I have scans done, I always have them performed at Hopkins, where I get the results just 3 hours later. So I do not have an opportunity to see the results because my doctor usually has them handed to her as she comes into the exam room then reads them with me.

But to me, this is preferable to the way my other gyn onc handles it. I have the CT scan on Monday and see him on Wednesday for results and an exam. Two days of agonizing.

Besides, I think Hopkins has the better equipment.

A dear friend of mine is a brilliant radiologist so I have all my scans sent to her as well.

joann

Kaleena's picture
Kaleena
Posts: 1195
Joined: Nov 2009

Annie, so sorry to hear about your recent recurrence. However, it was good that you were adamant about getting a PET/CT scan and didn't wait until you were symptomatic. I hope you feel comfort with your new gyn/onc.

Sending you thoughts and prayers.

Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So sorry about your report. Good that you insisted on the test. I don't get the attitude - like Ro said so many of us (me included) don't have any symptoms.

I agree with you to get in there and start treatment asap. That's what my doc told me today with rather small lymph node mets - about 1/2 inch in size. He does not think waiting is good - wants to nip it in the bud and bring back to NED.

It looks like Ro, you, and I will all be headed back to treatment together. I'm looking forward to celebrating that 5th anniversary with you all.

Annie, I understand that your world is shaken. You are in my thoughts and prayers.

Hugs, Mary Ann

HellieC
Posts: 455
Joined: Nov 2010

I am so sorry to hear of your latest scan results, Annie. Definitely NOT the news you wanted to hear. I agree with the others that it does sound as if this is a significant change that warrants jumping back into treatment now.
But you WILL be here for your 5th anniversary and beyond and we WILL celebrate it with you. You have knocked this blighter back before and you will do it again.
I know that you must still be shocked and the treatment plan isn't yet clear, but hang on in there - it will become clear soon and then you can forge ahead in the battle.
We're all with you
Kindest wishes
Helen

longtermsurvivor's picture
longtermsurvivor
Posts: 1818
Joined: Mar 2010

and give you these choices. It isn't wrong to do what he has recommended. But it isn't right for him to make the decision for you. He certainly may be in a position to figure he is sparing you the disability of chenotherapeutic disability when it won't improve your situation substantially. Or he may have inserted his own views as to treatment of advancing chronic ovarian cancer into your case.

But it is your disease, not his. So long as he is treating you without having planted unrealistic expectations in your head; so long as you are making your own informed decisions about pushing immediately forward with treatment versus a more conservative approach, he needs to respect your wishes.

If after your conversations with him, he can see this your way, and do this your way, its time to proceed. If he can't see it your way, its time to find another oncologist more in tune with your needs.

Best

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

'Be your own advocate - no one else cares as much as you do'. I have read your 'about me' page a few times and I have always loved those words that you wrote. It is inspiring and we need to keep repeating it to ourselves. We need to always be vigilant about what is said when we see our doctor. It is 'about us' and we are not just cases. That is the big divide between patient and doctor. No matter how much we may like them, there are always those days when they may be too busy, tired, maybe even grieving (doctors do this too) to respond to our unique situation. That is the very reason that I remind myself of what you wrote.
I am waiting on CA125 and CT results too. My gyn onc saw results showing multiple lesions in my liver and nodules in my lungs and asked me to make an earlier appointment than my usual 3 monthly check. I have been symtomatic since November but have been having investigations for cardiac and lungs. Anxiously waiting for Monday to arrive. May you be peaceful and not have the worry take over
Georgia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I support you seeing that other doc. We need a health care team that doesn't throw in the towel on us. Like longtermsurvivor says, our docs should give options and let us determine. Instead of planning our funerals!!

Maybe the other doc will be a better "fit" for you. Dealing with all this is bad enough without dealing with resistance from our doctors.

HUGS to you, friend.

Mary Ann

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Oh dear, Georgia, it does look like we are at similar places right now. Please let us know what you learn, treatment options. Likewise, try not to worry too much. I told myself yesterday, that the only difference between Thursday and Friday was that I knew, not that anything had suddenly changed in the 2 days, nothing just 'grew'- i was the same person and needed to continue on living in the moments of the day. I think a little meditation time is called for!
Stay positive.
Annie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Georgia,

Checking in to see if you got your results....Keeping you lifted in thoughts and prayers...

Laurie

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi Laurie, Thanks for your cheery post. Saw my gyn/onc on Monday. CA125 was 9 which is good. She did not seem worried about cancer recurrence or lung nodules. However CT showed five more liver cysts. That makes ten. One seems to have grown since January (last radiologist said lesions). Radiologist now suggesting an ultrasound to confirm. My gyn/onc has given me a referral to a gastroenterologist for consultation. I have been researching liver cysts. I have found they can be symptomatic and surprise, surprise can cause breathlessness, early satiety, upper abdo pain, distension, nausea etc, etc. I kind of feel reassured now that I know I am not imagining all of this. Because docs have yet to confirm what is causing my discomfort I feel somehow that I have to keep proving that my symptoms exist. I am so thankful to be able to share on this board. I love you all, may you be peaceful and happy, Georgia

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Many thanks to all of you for sharing your thoughts and your support. It truly helps and I am so glad to have this place to come to. I have not yet been able to tell my kids but I am sure my daughter has an inkling as she knew I was expecting to get my report and usually calls to check… and of course I have not called her either :(

Thank you all for reminding me to make sure I am in the driver’s seat in dealing with this! I have been treated at an NCI Comprehensive Cancer Center and also have all my health care needs coordinated thru their health system, part of a research and teaching medical center. In the Fall, I went outside for a second opinion and to possibly change my gyn onc care, and as well, took the time to have an incisional hernia repaired at another facility. I did not feel I had the same level of care even though the other facility is highly ranked /respected. It was not the physicians but the lack of coordination and communication and overall management of care. I really did feel like I was totally responsible for personally managing every detail of my health care. Hence I returned to my old gyn onc for follow-up in January. So not an easy decision, but I definitely hope to be able to consult with the other gyn-onc and will have to consider my best option on who to follow/where to get best care. As if the disease weren’t difficult enough!

It does seem like several of us are dealing with similar issues, some worse than others, and will be heading into treatments in near future. My healing thoughts for best outcomes go out to all of you.
Annie

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear Annie,
I applaud your tenacity and have been there too, no symptoms but fighting for CT and then having them say ok now do pet/ct. Sadly our instincts are right.
You are the master/mistress of your treatment and good for you that you are in charge of you!

After second recurrence not three months shy of second surgery in 16 months to remove 8cm tumor and do colon resection, was put on Gemzar Carbo. My platelets and red and white didn't allow full dosage as well as sticking to regular protocol. I was very anxious that the bad buggers couldnt be killed on cntinued lowering dosage. Pestered for PET. Finally paid for PET (may get refund since it came out lighting up lymph nodes).
Just began IMRT radiation 5 x per week with lowish dose of Sisplatin at the begining of each week. Has anyone been this route?

We must keep fighting and the group support is so empowering!
All the best,
Sara

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I had a combo of daily tomo (low dose) radiation and weekly carboplatin last time I recurred (upsc). Docs said that it was synergistic doing both simultaneously. I think the chemo sensitizes the cells more to the radiation.

You may be getting same type of thing with your combination. What did the docs say to you?

My doctor was VERY happy that even though I had recurrence elsewhere, they neck area did not show any activity which means the treatment was very effective - I guess that would be the good news!!

All the best to you in your treatment. Mary Ann

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thank you Sara for your comments. I am not sure how I missed your post a few weeks ago of your second recurrence! I am so sorry that it occurred so soon; that is very hard to deal with. Hopefully with all hot spots contained in pelvic area, the chemo and radiation combo will get it all taken care of.
Healing thoughts and Hugs to you.
Annie

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

I want to join with the others in wishing you the best with your treatment for recurrence. Look after yourself while your are having radiation and Cisplatin. You are so right. Group support is empowering. Kind thoughts to you, Georgia

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am sorry about the news.
I am glad you are going to seek other opinions.
You are a strong, positive, healthy women.
All these qualities are strong weapons to fight cancer.

Please now that I am here, and near you, for you.

Blessings and hugs to you

Double Whammy's picture
Double Whammy
Posts: 2318
Joined: Jun 2010

I'm sending prayers and hopes to you all.

Suzanne

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I wouldn't be too put off by your doctor's reluctance to start chemo until you are symptomatic. It sounds like this happens quite a bit with Ovarian cancer re-occurrences and it does not mean that they don't expect it to work. On the contrary, they just don't want to treat the re-occurrence until it becomes necessary. There is an argument for it, that escapes me at the moment, but I'm sure your doctor can give you reasons.

That said, I'm with you...let the treatment commence...immediately!

If you don't mind me asking....why did you insist on a scan when you had no symptoms?

Take care,
Cindy

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I just want to let you know how much I have come to care about you and to send you all my heartfelt wishes for the most positive outcome of all the upcoming gyne-onc appointments and treatment decisions. You are very much in my thoughts.

Big hugs,

Jill

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Thanks Jill!!! I truly appreciate your support.
Continue to stay well!
Annie

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

What are the symptoms of a recurrence? I just don’t know and since I did not have symptoms of note when cancer first surfaced when it was Stage IVB, I have been hesitant to just wait for a recurrence to announce itself. Now, in retrospect, I had subtle symptoms that could have been due to various issues – dietary changes, just that plain old aging thing, medication changes – nothing that was significant enough to note, mostly just digestive issues. I have since researched liver met symptoms and, yes, they were there and now I am more aware of them. I think waiting for significant symptoms allows too much opportunity for advancement beyond reasonable treatment options – but that’s just my opinion. As for lung issues, I was having more problems earlier last year, hardly anything recently. Last spring i had resorted to only playing golf if I had a riding cart - that cut into golf outings considerably, since my husband is the best at finding low cost tee time deals and that's when we play ;-) On Friday, I walked a hilly 18-hole course pushing my cart with no difficulties whatsoever. I'm beginning to appreciate my doctor's constant caveat about my 'yeah!! no organ involvement' with his 'scans don't show everything.'

No doctor wants to list all possible recurrence symptoms – recurrence where? – too many possibilities and then know I’d be imagining everything might be something. Probably why I hadn’t checked on what they might be. I did ask about brain met symptoms since he will only scan if some indication surfaces and he mentions “a wide-based gait’ - my first husband was a neurologist and my thought was that was not necessarily an early or main symptom, just one of many possibilities.

As to waiting to treat, the second gyn-onc I consulted basically agreed and even indicated his next chemo consideration would be the same. I have appts. with both doctors this week.

And all i wanted for Christmas this year was a crystal ball.
Annie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you lots of positive energy this week as you go for your consults....

Stay strong and keep us posted!

Laurie

pakb56
Posts: 141
Joined: Jan 2012

Just like "me time" we are entitled to "whine time". It is like a release of sorts.

Take Care and Be Well,
Pat

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you hugs, thoughts and prayers on your newest journey....

Please keep in touch!

Laurie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Annie, I was so shocked to read your post about your recurrence. You are such a trooper and have always been so encouraging to everyone on this board. I am just so sad to hear the latest development. Whine away....you certainly are justified.

Sending you lots of positive thoughts....please keep us posted.

Wishing good things for you!

Karen

JoAnnDK
Posts: 276
Joined: Jun 2011

When I have scans done, I always have them performed at Hopkins, where I get the results just 3 hours later. So I do not have an opportunity to see the results because my doctor usually has them handed to her as she comes into the exam room, then she reads them with me. If I have any questions later, I can e-mail them.

But to me, this is preferable to the way my other gyn onc handles it. I have the CT scan on Monday and see him on Wednesday for results and an exam. Two days of agonizing.

Besides, I think Hopkins has the better equipment.

A dear friend of mine is a brilliant radiologist so I have all my scans sent to her as well.

joann

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