SCANS AND CA 125

[chemlcali]

SURGICAL ONC SAYS I NEEDED BASELINE BODY SCAN. CHEMO ONC SAYS ONLY AT COMPLETION OF CARBO/TAXOL SIX TREATMENTS. WHEN I QUESTIONED DIFFERENCE OF OPINION CHEMO ONC SAID HE GOT SURGICAL ONC TO AGREE. NO ONE HAS MENTIONED DOING A CA 125. I HAVE UTERINE CANCER WITH A RADICAL HYSTERECTOMY DONE. FOUND CANCER IN TWO OF SEVENTEEN LYMPH NODES. THOUGHTS? I FEEL CAUGHT ABOUT WHETHER TO INSIST ON SCAN NOW. DUE TO HAVE THIRD TREATMENT NEXT WEEK. DID MY DOCTOS JUST DROP THE BALL AND ARE NOW COVERING. NOT CONFIDENT IN TREATMENT.

[Hidden]

Hi,

It must very confusing for you, with OC they usually take a scan halfway through after the third chemo... You could get your ca125 done through your GP it might put your mind at rest... If it is dropping... Sending you my best wishes love x G x

[chemlcali in reply to Hidden]

HI GWYN, THANKS FOR RESPONDING. YOU ALWAYS MAKE ME FEEL MORE COMFORTABLE. I WILL CONTACT MY GP FOR THE CA125. I WILL KEEP PUSHING FOR.THE SCAN AS THE CHEMO ONC ONLY WANTS TO DO IT AT COMPLETION. YOU ARE RIGHT . . . .IT IS CONFUSING.

TAKE CARE.

JANE XX

[Whippit in reply to chemlcali]

I hope you get a resolution to this Jane. A CA125 test costs £20 in the UK. It's not a lot to ask it. xxxxx love Annie

[Whippit]

Dear Jane

It's a horrible situation to be in if your two main practitioners can't agree. I've just noticed from your profile that you're based in the US. Is it possible to ask for a second opinion at another hospital? Here they have a Multi-Disciplinary Team meeting prior to informing us what they consider is the best way forward. What has happened to you is unnerving.

If it helps my experience was different from Gwyn's. We went right through the 18 weeks of chemotherapy and then I had one scan six weeks after finishing. I'm not really sure why one would have a scan mid-term. It's not as though they'd say ah you've responded well so we'll stop the chemotherapy, and I'm not sure they'd risk changing the prescription if it wasn't working as hoped as I understand chemotherapy is a bit like anti-biotics. You have to have the whole dose for it to be effective.

I think it would be reasonable to take a CA125 count. This was done every 3 weeks during my chemotherapy to monitor the trend. A little less invasive than scans which if you have the CT type are not advisable to have too often.

I do hope you resolve this dilemma. Please let us know what happens.

Love Annie xxx

[chemlcali in reply to Whippit]

HI ANNIE, THANKS FOR.RESPONDING AS WELL. I APPRECIATE HEARING FROM EVERYONE. I LIKE.THE IDEA OF THE MULTI DISCIPLINARY TEAM. I BELONG TO AN HMO (KAISER) WHICH KEEPS HEALTHCARE AFFORDABLE. I HAVE A SMALL CO PAY AND.THEN PAY AN ADDITIONAL MONTHLY PREMIUM ALONG WITH MY EMPLOYER WHO PAY A HUGE MONTHLY PREMIUM . A SECOND.OPINION IS.NEVER OFFERED AND TO BE.QUITE HONEST THRU THIS ENTIRE PROCESS FROM DIAGNOSIS UNTIL NOW I HAVE REALLY NOT BEEN GIVEN OPTIONS. IT IS OVERWHELMING TO JUMP FROM DIAGNOSIS INTO SURGERY WITHIN A WEEK TO CHEMO WITH SIX WEEKS. I AM NOT REALLY COMPLAINING IT IS JUST DIFFICULT TO GET YOURSELF EDUCATED IN SUCH A SHORT AMOUNT OF TIME. THANKS FOR HELPING ME.THINK.THIS THRU.

[Hidden in reply to Whippit]

Annie, I think you have missed the point. We are all individuals and are treated as such by our own oncologists who hopefully know what is best for us at the time. After all they are the experts not us. Gill

[Whippit in reply to Hidden]

Dear Gill

I would have completely agreed with you until quite recently when I discovered that my oncologist was giving me information to manage my expectations within the funding and resource constraints of my NHS health board. Friends here in my support group in Wales would confirm that Cardiff and the Vale NHS Trust simply does not fund drugs and treatments that are available, for instance, in the Abertawe Bro Morgannwg Board which is the adjacent health board. This is a well-known fact to people who work in the field. They generally don't expect patients to be discerning but fora such as HU is putting patients together so we can play our part in getting fairer treatment for women across the UK. Sharon in Fife is in the same frightful situation as I was. She has been denied two drugs that are not available in Fife but they are available in Aberdeen and Glasgow. I don't question my former oncologist's knowledge and expertise for a moment. I have an enormous respect for her and she does know what's best - but that's within the constraints of her particular NHS trust.

Did you go to Members' Day? Professor McLeish put up a slide that I can see in my mind to this day. The average survival rates for ovarian cancer are starkly different across the UK. He said it is not to do with socio-economic factors. Radical surgery is making a huge step forward in prolonging the lives of women ovarian cancer. It's not for everyone but if women do find out they are a suitable candidate and it's not available in their NHS trust they will not be offered it unless they ask to be referred to a clinical trial such as DESKTOP. Even then their NHS may not agree to fund the non-trial clinical costs of entering a trial in another board.

That being the case the oncologists are the experts and they genuinely want the best for us. I've been given enormous encouragement by my former oncology team so I know they appreciate a patient who asks questions and takes an interest in their care package.

I'm sorry this is rather a long reply. I just want a fairer deal for us all.

love Annie xxxx

[HerThing in reply to Whippit]

Annie, I still think you are missing the point that Gill is making. It is nothing to do with the differences between different NHS trusts. It is the way you make a broad statement about what an oncologist may or may not decide to do at seeing the results of a midway scan. You said,

" It's not as though they'd say ah you've responded well so we'll stop the chemotherapy, and I'm not sure they'd risk changing the prescription if it wasn't working as hoped as I understand chemotherapy is a bit like anti-biotics."

As my own response shows, changing the prescription is sometimes exactly what is done. If only it was as simple as taking anti-biotics how wonderful that would be. There is also the effect on mind set when a scan a shows an improvement midway. This encouraging result can be beneficial in motivating someone who may be having a very hard time tolerating their chemo. It also occurs to me that while being dismissive of half way scans you advocate CA125 being monitored. This seems a pointless exercise if the whole course of chemo is going to be done regardless of the results and especially if the CA125 continues to rise.

To clarify, the mid way scan in Angie's case was nothing to do with the CA125 results at all, it was always part of the plan to do one. I think this is common to many ladies' treatment plans.

While your experience is encouraging in terms of the effectiveness of first line chemo, it is important when posting to be aware that you are all very different in how you respond and indeed in terms of what the oncologists do or suggest. I think that is probably what Gill was getting at though I am happy to be corrected.

Andy x

[Whippit in reply to HerThing]

Dear Andy

I think it's really helpful to have your feedback like this. Sometimes posting online things can get misconstrued and if you were chatting with someone they'd put you right and you'd agree and see their point of view. I think I've given the wrong impression if my post suggested that I've ever ignored my oncologist's advice and I would never challenge advice such as when to have scans or tests, etc though thinking back my oncologist asked me if I wanted one back in November and we agreed we'd wait till Jan. She suggested I had another in June as the disease is returning so I did just that.

I did say that I'm not really sure why one would have a mid-terms scan and I really appreciated your response which resolved that doubt in my mind. I'm really sorry I seem to have expressed myself in a manner that has upset you and perhaps Gill. I promise you both it wasn't intended in the least. I wish I could do those smilies because they add tone and nuance to words.

with best wishes. Annie

[HerThing in reply to Whippit]

Annie, You didn't upset me, that isn't easily done, I have quite a thick skin. My concern was, that while sharing different experiences is often useful, it can sometimes be harmful to make broad statements based on that experience alone, especially to those new to the disease that may be reading these messages. Sometimes saying less is actually giving more.

I appreciate your apology, but in this case, it wasn't necessary as I wasn't in the least hurt.

Kindest regards

Andy

[Hidden in reply to HerThing]

Thank you Andy, you got it in one. My point was please comment on this type of post if you have first hand experience of what the person is asking. PLEASE don't comment just for the sake of it. This is continually happening now and never did three years ago. This is the last comment from me. Xx

[ang65 in reply to Hidden]

I hope this doesn't mean that you will be leaving us as well Gill?

Angie xxx

[Hidden in reply to Hidden]

Oh no Gill I hope you aren't leaving

Anne x

[Hidden in reply to Whippit]

Hi Annie

I had surgery first followed by chemotherapy- others have some chemotherapy then surgery then more chemotherapy- thus different experiences in time of scan.

As others have said although many treatments may be similar we are all treated individually and our outcomes are all very different.

Although it may be helpful to discuss and share our experiences the finer details are best left to the oncologist in my opinion.

Anne x

[Whippit in reply to Hidden]

Hi Anne

I had the same regime as you. The gynaecologist had decided to do a hysterectomy before he had confirmed in his mind that I had ovarian cancer. I think Andy has clarified perhaps why scans are done mid-cycle. I hadn't thought of that scenario. It must be very worrying for Jane that her clinicians don't seem to be in agreement with one another. If you glimpse a chink in the armour it can be rather unnerving. That's what happened to me. However, I do wholly respect that it is right for many patients to leave the decisions to the oncologist. Now I feel comfortable with the service of my new NHS Trust and I believe if they know of a suitable treatment I will be offered it I am more than happy to defer to their wisdom and expertise. xxx annie

[Hidden in reply to Whippit]

Hi Annie,

I think our relationship with our oncologist should be a partnership where possible.They are the experts and have a lot of experience and can help us make informed decisions.

These decisions and reasons behind them are very individual and what works for one may not be appropriate for another.

Some of my experiences particularly physical and emotional ones may help others and I am more than happy to help and share these but wouldn't advise on an individuals treatment as I neither have the expertise or the knowledge to do so.

Love Anne x

[HerThing]

Hi Jane

I thought you might benefit from a third view given the views expressed. It isn't true that a midway scan has no benefit. It's okay to say keep on taking the chemo, but if it is not working, it is not working. In my wife Angie's case that is exactly what happened. The tumours at the mid way point showed growth in some areas. To have completed the chemo would have given them 3 months continued growth, then a period of rest for her body to recuperate before trying another agent. As it happened the first line of treatment was abandoned in favour of trying something else. We don't know if this is working any better yet, but at least it is being tried before the cancer had time to grow any further. As you can tell, I am an advocate of mid term scans.

Best wishes whatever you decide is best for you.

Andy x

[chemlcali in reply to HerThing]

SINCE MY CHEMO IS MORE PREVENTATIVE AS THEY FOUND IT IN ONLY TWO OF THE SEVENTEEN LYMPH NODES TAKEN, I AM NOT SURE WE HAVE A WAY TO.KNOW IF IT IS WORKING. I DO APPRECIATE YOUR RESPONSE. THE MORE I LEARN ABOUT THIS DISEASE THE MORE I AM CONVINCED WE ARE ALL DIFFERENT. I WISH YOU AND YOUR WIFE WELL WITH THE NEW DIRECTION. I HOPE IT IS SMOOTH SAILING FROM.HERE FOR YOU BOTH.

[HerThing in reply to chemlcali]

Thank you Jane that is kind of you. I couldn't agree more. Every one is individual in both terms of disease and response to treatment. I just hope you find a place where you are content with the choices and decisions.

[Whippit in reply to HerThing]

Thanks for that information Andy. I hadn't thought of that scenario. Did they suggest a scan for Angie because her CA125 hadn't dropped by the mid-way point? If that's the case it does seem that Jane could at least do with a CA125 test to see where that is.

x Annie

[chemlcali]

I JUST RECEIVED AN EMAIL FROM MY CHEMO ONC AND HE SAYS.THERE IS NO VALIDATION THAT A CA 125 WOULD BE A TUMOR INDICATOR FOR ENDOMETRIAL CANCER. I GUESS DOCTORS IN THE USA ARE.LOOKING AT DIFFERNT THINGS.THAN IN THE UK. WISH I COULD SAY I.FEEL.BETTER, BUT AM JUST MORE CONFUSED. THANK YOU ALL FOR.THE DISCUSSION.

[Hidden in reply to chemlcali]

Hi Jane,to be fair, I think your Oncologist has a point, because endometrial cancer is very different to ovarian cancer and everyone has been commenting on the understanding of Ovarian Cancer thinking this is what you have, you can take comfort from the fact that endometrial cancer has a far better success rate than Ovarian cancer and even though you have stated on your profile that you have endometrial cancer,

people don't always check and of course assume that you have the same cancer as them on this site I wonder if you would get better advise if you joined a support site for endometrial cancer as well as this one.

Best wishes love x G x

[chemlcali]

GOOD.MORNING, I APPRECIATE ALL OF THE.DISCUSSION. I WILL.TRY.TO.FIND.AN ENDOMETIAL COMMUNITY. I AM STILL LEARNING ALL OF THIS. I DID ASK MY ONC FOR AN ACCEPTABLE SITE. I WANT TO BE INFORMED WITH APPROPRIATE INFORMATION. IT IS.WHO I AM. I NEED TO KNOW. AGAIN, I APPRECIATE ALL OF YOU SHARING. WE ARE ALL DIFFERENT. WE DO HAVE DIFFERENT CHALLENGES. THIS IS.A GREAT.SITE FOR.SUPPORT. PLEASE TAKE.CARE,

JANE. XOXO

[Hidden in reply to chemlcali]

Hi Jane, please do not think that I am saying to leave us, I don't mean that at all... what I do mean (and think I said) "as well as" we are here to offer you our support, but might be better to see if you can find somewhere else that understands your cancer, but please feel free to ask questions etc we are here to support you too...I can so relate to you wanting and needing to be informed ...I feel that it helps us to move forward...you are very welcome in our community. Love x G x

[chemlcali in reply to Hidden]

HA! YOU WILL NOT GET RID OF ME THAT EASY. EVERYONE HAS BEEN SO WELCOMING AND SUPPORTIVE. WHILE OUR CANCERS MAY BE DIFFERENT, WE ARE ALL STILL AFFECTED BY THIS DISEASE AND THERE.IS SOME CROSS OVER NO.WHICH DIAGNOSIS WE HAVE. I DO APPRECIATE ALL.OF YOU AND RESPECT EVERYONE AS INDIVIDUALS. SO, NOPE NOT.GOING.ANYWHERE BUT WILL REACH OUT TO.OTHERS WITH ENDOMETIAL CANCER.

[ScardyCat40]

I started my chemotherapy 4 weeks after surgery my oncologist was reluctant to do a baseline scan because my body was still recovering from surgery so there would have been a lot of changes that could be misinterpreted. However I was fairly insistent and I had my first scan after my first chemo and scan after chemo. My CA125 actually started to level out after the 3/4 treatment but because of the lag between treatment and results we weren't aware of this until the 5th treatment so I decided not to complete the chemotherapy course. My CA125 gradually came down on its own and took about a year to reach normal. Subsequent scans have been NED or have shown only small changes that have resolved themselves without intervention. My latest scan has shown a small increase in one of my lymph nodes so we are going to repeat the scan in 3 months time to see if there has been any change.

[chemlcali]

I WISH YOU WELL.AS YOU CONTINUE TO MONITOR YOUR LYMPH NODES. I FOUND THE WAITING TIME BETWEEN SURGERY AND WHETHER OR NOT I WOULD NEED CHEMO AS A CHALLENGE. I AM A.BIT OF A TAKE CHARGE AND LETS DO.WHAT WE.HAVE GOT TO DO AND MOVE ON. SO WAITING IS HARD FOR ME. I HAD MY THIRD CHEMO TREATMENT YESTERDAY. I FEEL PRETTY.GOOD.HOWEVER MY WBC COUNT IS UP AND MY.HEMOGOBLIN DOWN. SO WATCHING FOR INFECTION AND I MAY NEED A.BLOOD TRANSFUSION. USUALLY BY TOMORROW I WILL HAVE LEG PAINS FOR.THREE DAYS. HOWEVER, THE PAIN WAS NOT AS SEVERE FROM FIRST TO SECOND TREATMENT SO AM HOPING THE THIRD WILL BE EVEN LESS. I DO HAVE VERY DARK CIRCLES AROUND MY EYES WHICH I ASSUME IS CAUSED BY.THE.LOW.HEMOGLOBIN.

HAVE A.GREAT DAY AND.I.WISH YOU WELL.

JANE