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Whine bottle emptied, it is what it is.

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

I met with my gyn-onc yesterday and had long discussion reviewing all possible scenarios for addressing disease progression. My situation is a little more unique in that I have had 2 primary cancers that could be involved, singly or a combo. The only way to know for sure would be to biopsy everything. Not really practical. It’s 2 years since I stopped taking Femara to control breast ca. The breast ca at the time ('99) of my recurrence, disease was extensive, not optimally resected, treated with radiation and tamoxifen then changed to Femara after I developed significant uterine polyps and bleeding. In 2010, while dealing with UPSC recurrence with chemotherapy, I opted to discontinue Femara – and have been thrilled to lose all that awful weight gain I had with it and have been enjoying being ‘normal’ size again! So there is the dilemma as to which cancer has surfaced in lungs and liver, or is it a mixed bag?

We discussed UPSC recurrence primarily as it had already been confirmed by lymph node biopsy last June. I asked questions I probably didn’t want answers to – got them anyway. Actually just confirmed my own analysis of incurable nature of recurrent disease. Before we reviewed issues, he noted he was sure my first response was to address this quickly and aggressively. At this time, he considers me healthy, all lab work shows all organs systems functioning normally, and therefore, wants to conserve my quality of life as long as possible. Despite my initial panic, I have opted to try the conservative approach. I am starting tamoxifen treatment to see if it will control disease with minimal side effects or impact on my daily life. In case any issues are breast cancer, it will work for both cancers. Unless symptoms develop or any other issues arise (total panic!) will repeat PET/CT in 3 months and review again. This plan allows me to try conservative and yet be able to switch to aggressive anytime. If I go the more aggressive chemo, radiation treatments, etc. first, QOL will suffer and be at a lower level if I then want to switch. I have been fighting cancer for nearly 19 years and this is the scariest it has been.

I groused some about lack of trials for UPSC recurrence and that it’s treated like ovarian but we are not eligible for the trials. He did note it might be possible to get into a Phase 1 trial just not a 2 or3. Worse, he noted that ovarian is more responsive to treatment than UPSC. Despite all the mutating that the cells do they still retain some of their original nature, enough to make UPSC cells more aggressive based on the way they originally functioned. And I always thought it was the opposite.

I still have appt scheduled with another gyn-onc and will pose same questions to him for his POV. Sorry for such a long post, but I will be eager to read treatment plans, experience, etc. from others.

Healing thoughts to all.
Annie

julia12756
Posts: 22
Joined: Jan 2012

Hi Annie:

I wish I could offer wonderful advice and share my experience to help you but I was only diagnosed last month and am just starting my treatment. I did want to let you know though, that you are in my thoughts and I am saying a special prayer to the powers that be for you.

Julia

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

It sounds like you had a quality discussion with your doctor and have considered both options. It does make sense to take it conservatively if the aggressive approach will sap your strength and lead to downturn. I think that's what happened to my brother-in-law and when the chemo ravished his bone marrow, the docs threw their hands up and said they could do no more for him and he died rapidly thereafter.

I have concerns about a third aggressive treatment regime for me but am placing faith in my doctor who was OK with watchful waiting last time but said no this time. He wants to get it while it's small and then hopefully give me another year reprieve.

It really is unfair that UPSC is such a monster and the insurance companies don't give us the same benefits yet this is WORSE than ovarian (I didn't know this - what an ominous predicament).

It will be interesting to find out what the other doctor will say. I think you are an amazing and strong woman and I want you to be here for a very long time traveling this road with me!!!

Loads of hugs to you, Mary Ann

Tresia23's picture
Tresia23
Posts: 71
Joined: Dec 2010

Hi Annie, I just read your post. It is a complex picture that you describe, not knowing which cancer has shown up in lungs and liver. It is really good to know that you are healthy and have good organ function this is a big plus. Being fit to undertake therapy is high on the list. I can understand you enjoying being a normal size again too following weight gain. All about being comfortable in our bodies. It sounds like you have a good grasp of what seems to be happening which will direct your choice of treatment. It will be really helpful to hear from other ladies' experiences too as well as their treatment regimes. Kind and loving thoughts to you at this tough time, Georgia

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Glad you have another opinion coming your way. This UP SC really is a " monster". So sorry you have to deal with it again. My third round of chemo has been rougher already than the first two rounds. The nausea from the Cisplatin has been really bad. The Emend and zofran have not helped. Today I took a zofran and decadron this morning. The nausea was better today. Hope tomorrow is a better day, too. The doctor's office really did not have any other suggestions for the nausea.

I got my liver enzymes rechecked, and they were only slightly elevated. So I am continuing the blood thinner shots. I really do not want to have a stroke like Diane did. My abdomen is very colorful.....green, yellow, purple and black. Looks like someone has been beating me.

Good luck with making your treatment decisions. Healing thoughts right back at you. In peace and caring.

Kaleena's picture
Kaleena
Posts: 1010
Joined: Nov 2009

Annie,

It seems that you have a good grip on all of this and have a good plan in place with options. You will be in my thoughts and prayers.

Kathy

RoseyR
Posts: 462
Joined: Feb 2011

Am so happy to hear from you but sorry you are dealing with another recurrence. But all that you say makes so much sense; it's the plan I would adopt too.

Several of us are astounded to hear that uterine papillary serous is "harder to treat" than the ovarian version. I too always thought it was the opposite. Are you sure you heard him correctly--and that he's right? And I wonder if this is true for all aggressive uterine versus ovarian cancers.

Another thing I wonder is whether some recent findings on enhancement of chemo for ovarian cancer (LDN was found to enhance cisplatin, for example) would apply to cisplatin for uterine cancer. It would surely seem to, wouldn't it? I have also read that selenium greatly enhanced carboplatin/taxol in treating ovarian cancer (preventing "chemoresistance") and suspect it would have a similar effect of these chemotherapeutic agents in treating uterine cancer.

Just some thoughts.

Double Whammy's picture
Double Whammy
Posts: 2263
Joined: Jun 2010

Did this discussion take place between you and your gyn oncologist or your breast cancer oncologist? More importantly, are they talking to each other? Since both cancers like to go to the lungs and liver, I'm sure there is quite a quandry about which one (or both) is responsible for your recurrence. I'm glad you're getting a second opinion and I hope the Tamoxifen stops this in its tracks, whichever one it is. I understand they can't biopsy all of the spots, but wish you knew which one it is so treatment could be optimal for one or the other. I do think it's curious that you stopped Femera 2 years ago and now have these new mets.

Just wanted to let you know that I will be sending a few prayers your way as well as a whole lot of hope.

Suzanne

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

Hi Rosey,

The problem with using treatment methods for other kind of cancers is that many if not most insurance companies won't cover the treatments if there hasn't been extensive studies to prove they also work for the cancer they weren't created for.

We should be able to try all alternatives to save our lives, but apparently our insurance companies don't see it that way.

Cindy

RoseyR
Posts: 462
Joined: Feb 2011

Cindy,

You're right that insurance won't cover the treatments witout extensive studies--but if you wanted to do anything to enhance your own chemo, and avoid chemo-resistance, selenium is very inexpensive (200 mcg a day was prescribed dose to enhance carboplatin in treating ovarian cancer; you can find the study by Googling "selenium enhances chemotherapy for ovarian cancer") and LDN (low-dose naltrexone) is also quite affordable.

Unlke selenium, LDN must be prescribed by an integrative doctor, yet it costs less than forty dollars a month (one of the reasons not much research is invested in it; it promises to make nothing for pharmaceuticals).

But If LDN can enhance chemo for ovarian cancer, it is likely to enhance it for uterine cancer as well. With no track record of harmful side effects, it might be worth a shot when a given round of chemo seems a "last chance" of beating back an aggressive cancer.

Just food for thought.

Rosey

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

Mary Ann and Rosey,

I saw my second opinion gyn-onc yesterday - he is a highly respected Dr as well and trained in and is involved with teaching/research at an entirely different institution. He confirmed that UPSC is indeed much more difficult to manage than ovarian. OV Ca treatment protocols are just all that are currently available. I commented on rare nature and asked how much he sees - his response, a fair number and had just diagnosed 2 new cases. The numbers seem to be rising. BTW, my first gyn onc is director of gyn-onc dept at a research/teaching facility, which is one of top 10 recipients of NIH research grants and an NCI designated CCC. His explanation re differences between UPSC and epithelial Ov CA has to do do with the inherent function of the original cells. Both arise from cells of same basic histology, however, the UPSC are the surface endometrial cells whose job is continuous growth/regeneration of the lining of the uterus whereas the ovarian surface cells are much less active in their original state. This may be a somewhat simplified explanation he gave me but it certainly makes sense as to aggressive nature of UPSC. Perhaps some issues with ovarian are that cancer develops outside of the uterus and can spread more quickly and without detection.

california_artist
Posts: 850
Joined: Jan 2009

The recent rise in the more aggressive UPSC has been often attributed to the use of Tamoxifen in the treatment of breast cancer. Does a bang up job on breast cancer, but promotes uterine cancer.

HellieC
Posts: 425
Joined: Nov 2010

Thanks for posting Annie - I was wondering how you were getting on. I think you are choosing a very sensible treatment route for now. My oncologist reckons that she seen quite a lot of success with hormone therapies in late stage disease. Back last November, when I was facing possible re-recurrence (luckily turned out not to be), we discussed it as an option for me. She said that she has some patients on it who have kept their disease under control for many years. Although I have had the more common adeno rather than UPSC, so I can't give you any figures for each type. However, taking this option will maintain your QOL and you can always jump back into more aggressive therapy should the need arise. You have been fighting a long time. It must be really hard to resist the urge to hit this on the head hard, but I think the path you are taking is a well considered strategy.
You are in my thoughts and prayers
Helen

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

A few days ago I would have gone after it aggressively just as you wanted to but now with your doctors explanation it makes sense to start out conservatively. Why go through the hell of an aggressive chemo treatment if tamoxifen will work for you. Of course with your second opinion, maybe I'll change my mind again. :o\

I'm so sorry you are going through this but it sounds like you have many options. I will keep you in my thoughts.

Take care,
Cindy

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

A very insightful update....

Keep us posted on your progress and symptoms....Sending you positive energy!

Laurie

JoAnnDK
Posts: 276
Joined: Jun 2011

Annie, sending good thoughts to you and thanking you for your informative update.

I don't know how, but I have always known that UPSC was "worse" than ovarian cancer. For one thing, there is a lot more research and money devoted to ovarian cancer.

Wish it were not so.

JoAnn

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

What did the second opinion doc say regarding treatment??

Mary Ann

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

Well, Mary Ann, brand new viewpoint: Start chemo immediately! He presented the opposite view from my reg gyn-onc. He believes that now, well basically in good health with normal organ function, I should make the most of my strength to treat aggressively. If cancer progresses with conservative treatment, i will be less able to handle chemo. He considers my potential response to treatment to be much higher than Dr #1. He gave same chance of tamoxifen working but thinks I have responded well to chemo in past and have not been treated with carbo in 3.5 years that I should get good response. Although carbo alone would be an option, he believes the synergistic effect of adding taxol or taxotere would be best. He considers less harsh a chemo than the Gemzar I did thru 2010, just get the hair loss. He would utilize Neulasta shots if needed to keep blood counts in range to maintain treatments. He believes aggressive first, if problems handling, then step back to conservative. This is a great argument to me!

I have concern that Dr #1 may lean toward preserving quality rather than quantity of life. I'm ready to give it the fight. Now I will need to see if Dr #1 would be on board with this regimen. He has always been conservative but he does say he will follow my treatment requests. I like the comprehensive center where I am treated over the individual practice/infusion ctr of Dr #2, but I will make a change if need be. So, back to the drawing board to review this with Dr #1.
Annie

JoAnnDK
Posts: 276
Joined: Jun 2011

Annie, what this doctor said makes a lot of sense. I agree that if the cancer progressed, you would not be as able to handle the chemo.

Best wishes and good thoughts to you.

JoAnn

RoseyR
Posts: 462
Joined: Feb 2011

Annie,

I know you've had lots of treatment, but have you had the carbo/taxol regimen before? Not everyone suffers many effects from it. I was very lucky to have none whatsoever beyond hair loss. If you've never done this particular regimen and want to know what supplements were prescribed for me to minimize side effects without interfering with the efficacy of chemo, just email me and will share.

Hugs,
Rosey

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

As you know, the treatment Dr. #2 suggests is the same treatment I received.
The strongest side effects were hair loss and joint pain, which I developed a few months after finishing chemo. Aside from that, remember I was even able to have lunch with you.

Whatever route you choose to take, we are here to support you.

<<<>>>

Double Whammy's picture
Double Whammy
Posts: 2263
Joined: Jun 2010

As Fayard says, we're here to support you no matter which route you choose.

Suzanne

sunflash's picture
sunflash
Posts: 144
Joined: Aug 2011

Annie,
I was diagnosed with UPSC in June 2011. It was my second primary cancer as well...the first time I had cancer was in 2007. My Dr recommended 6 rounds of Taxol/Carboplatin spaced 3 weeks apart. I decided to seek a 2nd opinion, and Dr #2 agreed with the 6 treatments of Taxol/Carboplatin, but thought they should be spaced 4 weeks apart. The reason for this being I've had chemo before and she thought my blood counts wouldn't be able to handle a more aggressive treatment. Dr #1 strongly disagreed, saying "why would I want to give your blood counts more time to recover, since I'd also be giving cancer more time to regroup and recover during the extra week? Let's hit it hard up front, and if we have to back off later to every 4 weeks we will!" That made sense to me, and I went with Dr #1's advice.
My blood counts were able to handle it just fine, and I finished my last treatment on Nov 10. I'm very glad I went with the advice of more aggressive treatment!
I guess I'm saying the only way you'll know how you'll handle the treatment is by doing it. Your Dr can make adjustments along the way if need be.
Sending hugs and prayers for you!

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

I forgot to mention that I had Neulasta the first day of each cycle, which also was the day I had both chemicals: carbo and taxol. I had 18 treatments, 3 weeks on, and one week off.
My white blood cells were never low enough to interrupt or change the treatment.
After taking having Neulasta, WBC were always back up by the following week.

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

Of course, we will support you no matter what treatment decision you make. Dr. #2's argument makes the most sense, though, and you certainly seem more upbeat since meeting with him. You have been in my thoughts very often, and I am sending you all of my best wishes.

Hugs,

Jill

california_artist
Posts: 850
Joined: Jan 2009

I was just talking about that very approach earlier today on one of the treads. I am understanding from what you said that you had chemo on a more continuous basis and your body was able to handle it. To me the most important part is that your doctor also thinks it makes great sense to absolutely not allow the cancer to regroup and morph into a stronger cancer cell, more able to fight off and defend itself against chemo. This is the way I do wish more doctors would use chemo.

Where are you being treated? I remember in your email where you said you were, but what hospital is trying this newer treatment scheduling plan?

And how have you been in the weight department, I do recall that your weight was of great concern in the beginning?

My love as always to you and your lovely smiling face,

Claudia

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

My heart goes out to both of you, and I wish you all the strength and good cheer to see you through your treatments successfully. Thank you both for providing inspiration for those of us newly diagnosed.

{{{{HUGS}}}}

Liz in Dallas

I Will Survive
Posts: 27
Joined: Aug 2011

How are you doing? What is happening now?

Hannah

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