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Confused with 2 different diagnosis and treatment options for 1A - Grade 3

Shelby54
Posts: 5
Joined: Sep 2011

Hi,

I am a newbie, having been recently diagnosed in August, 2011 and have been reading the other posts trying to get information related to UPSC. I have found the ladies on this site to be the most helpful and the most understanding. After reading a lot of the posts, I feel this is the best place to get my information because everyone has been there and has first hand experience. I will try to make this brief.

I had a complete hysterectomy on August 18, 2011 where they found a polyp with UPSC. On Sept 19, 2011 I had surgery for staging with a gyn/onc. He removed 44 lymphnodes in which all were negative as well as the washing and everything else he tested. He said I was very lucky because they caught it early and was staged 1A, grade 3 with UPSC. The first doctor recommended either observation or chemo. But he was leaning heavily on the observation side but he left it up to me to decide. I decided to get a second opinion and on Oct 19, that doctor's pathology report came back with carcinoscarcoma. The second doctor was much more doom and gloom. She is recommending definately chemo. I have tried talking to the first doctor again but he says not to put too much into the pathlogoy reports because they are open to interpetation. He says it does not really matter which cancer it is because both are high grade and aggressive and if I decide to do chemo to make me feel better then he is willing to do that. I must tell you though, my aversion to chemo is because I had both chemo and radiation back in 2005 for breast cancer and really did not enjoy it much at all.

I am now more confused then ever on which direction to go with treatment and was wondering if anyone else had 2 different diagnosis and treatment options and what did you use to help you decide. I have been reading online and on these posts, a lot of what is on line is out of date now. When I was diagnosed with breast cancer, it was easy because it was so far along, I did not have any options. The doctors advised very strongly treatment options. I guess I was looking at the doctors as the experts and wanting to follow their recommendations but now I have 2 different options. Any thoughts would be appreciated. I have to make a decision soon because of the time frame now going on 3 months since diagnosis. (You can tell I am a procrastinator and dragging this out) Thanks so much for being here when I need some reassurance.

Double Whammy's picture
Double Whammy
Posts: 2278
Joined: Jun 2010

I hate this! I was in the same boat with my breast cancer, but an oncotype dx test settled that for me. I had chemo and I don't want to do it again, either. But if I had to I would. The thing is you don't know it's necessary or not in this case, and that must be so frustrating. I was there while waiting for my oncotype score because I just knew it would be indecisive. I'm not sure that I like the results I got, tho.

You might ask yourself what it is about chemo that you are afraid of? The side effects? Hair loss? Risks? The effect on your family/work? The fact that it might or might not help? Whatever your indecision is about. Maybe if you remove cancer and chemotherapy from the scenario and deal with the other things that might help.

Sending hugs and prayers that you find an answer.

Suzanne

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

Can you explain what the Oncotype test is and how that works?

Laurie

Michaelynn
Posts: 67
Joined: Apr 2010

I have the same kind the same stage and the same grade cancer that you do. My doctor recommended radiation treatments (3) at the vaginal cuff. This is an internal radiation treatment. Also 6 rounds of chemo once every 3 weeks. His reasoning was that we have the best chance to prevent a re-occurrence if we take these preventative measures right now. Radiation caused me no side effects and chemo had minimal side effects (mostly bone pain).
I am almost 2 years out and everything is good so far. The decision of course is yours but in my opinion if I was already a cancer survivor and now have another cancer I would definitely do all and any treatments that I could just to be on the safe side and to give me piece of mind that I had done all I could do to protect myself. I know this is not an easy decision but go with what your gut tells you.

Lynn

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

Shelby,

I am a UPSC sister with one recurrence under my belt.

One thing I would recommend is that you check the NCCN (National Comprehensive Cancer Network) Guidelines - nccn.org- for treatment guidelines. I just checked them and for UPSC 1a - recommendations are observation or chemo or radiation. For sarcoma it is observe or hormone therapy. My doctor and many others use these standard guidelines. The surveillance schedule is also there.

Check with your surgeon about a functional profile of your cancerous tissue. This will help them determine best chemo if you go that route.

Observation along with many of the lifestyle changes mentioned on this site might be good for a while if you are comfortable with this.

I wish you the very best. Keep us posted. Mary Ann

deceptiveheart
Posts: 3
Joined: Nov 2011

R

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

Another breast CA and UPSC survivor however my UPSC was later stage at diagnosis and I've had/have recurrences of both. I would second Mary Ann's suggestion. Others at same stage on this board have followed the various recommendations but they would be best to offer their thoughts. I likewise had variations in path reports and my recent gyn onc's comment was that it is indeed an interpretation by each pathologist influenced by their knowledge, experience, etc., and is not necessarily an exact science nor as concrete as 1 + 1= 2. He also noted that mine was Grade 3 and would have been treated the same regardless of the subtleties of interpretation. And again, this same can be said for the treatment recommendations of the gyn oncs as their perspectives of your survival/recurrence possibilities are subjective as well. The key thing is to feel comfortable going forward with your decision so you are not stressing with worry or fear of a path not taken. I am in a similar state right now, 7 months out from latest recurrence and have only done some palliative radiation enjoying chemo-free days but must make a decision in the near future - I have an upcoming consult with a new gyn onc. Hope other Stage 1A's post their experiences.
Annie

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

My original post-hysterectomy (only 9 lymph nodes removed – omentum NOT removed – clean surgical site washing) pathology report (April 2009) showed a Grade 2 endometrioid adenocarcinoma at Stage 1B. My gyn/onc recommended no further treatment.

Two weeks later (May 2009) following quality review of my slides, an additional pathology report was issued. It noted an additional cancer, UPSC (Grade 3, Stage 1A), in both a polyp and in the lower uterine area. My gyn/onc recommended 6 rounds of Carboplatin and Taxol but no radiation. I went to another state for a second opinion. The gyn/onc there (heavily involved in uterine cancer research) recommended adding vaginal cuff brachytherapy to chemotherapy of at least 3 rounds. He also recommended that I review a packet of information on a clinical trial he was conducting to see if I might wish to participate.

After doing considerable research of my own and having a consultation with a radiation oncologist, too, I decided to have 6 rounds of carbo/taxol with the brachytherapy sandwiched in following the first 3 rounds of chemo. In mid-June I had a chest catheter (a Groshong catheter – not a power port) placed under general anesthesia, and began chemotherapy the next day.

At the completion of chemotherapy, the catheter was removed. I saw the gyn/onc every 3 months for a check-up the first year, and every 4 months the second year. Following my upcoming appointment January 2012, I think I will "graduate" to check-ups every six months. I remain NED (No Evidence of Disease).

It is indeed difficult to make treatment decisions with such a lack of clinical evidence to guide us. Each of us has to make the best decisions for herself. I send you a big hug as you make your decisions.

Sally

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

Unless I'm misreading your post, it sounds like your doctors can't even decide on what kind of cancer you have. UPSC and carcinosarcoma, though both rare and aggressive, are not the same kind of cancer. First, you need to find out which cancer you have. Maybe a third opinion? I think you might have more treatment options if it's UPSC, because according to what I've read, it is similar to ovarian cancer. There is also a blood test called CA125 that you can use to monitor your cancer which doesn't usually work for carcinosarcoma. Granted since you are in the early stages your chemo protocol would probably be the same, but it worries me that the first doctor doesn't think it's a big deal to even know what kind it is.

That said, this is a tough decision. I know if I would have been given a choice of not doing chemo with my doctor's encouragement, I probably would have happily agreed with him. I applaud your attempts to find out more information. One thing to consider is your grade of cancer. The higher the grade the more aggressive it is.

Take care,
Cindy
Stage 2, High grade carcinosarcoma

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Cindy

I, like you, also thought that the tumor grade indicated aggressiveness; however, my oncologist gave me a BIG explnation on grading.

Grading only indicates how un-differentiated the cells look. The cells can be the highest grade (grade 3) yet slow growing. That's what the gyn/onc said.

I think the TYPE of cancer is a better indicator of aggressiveness but that might now be true either. For ovarian cancer, there are at least 13 different types of tumors some slow, some fast growing. I'm dealing with the papillary serous adenocarcinoma type (much like uterine USPC) which is known for it's aggressiveness. It certainly seemed aggressive when I was diagnosed last year.

I am having a recurrence (more like a cancer re-activation as I never was in remission) yet the tumors at this time are no way nearly as fast-growing as they were last year. The CA-125 was < 10 at the end of chemo in the Spring. The CA-125 started climbing slowly this summer and recently climbed higher at a faster pace--then I had to be treated for a bladder infection.

I'm doing the coffee enemas & Gerson therapies at home & I think the treatments are beneficial but know I will be back in chemo by the end of the year. I'm trying to extend my time off chemo as long as possible.

laura25's picture
laura25
Posts: 159
Joined: Mar 2011

My hematologist said the same thing about grade and cancer type.

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

When I received my staging from my doctor I didn't ask any questions. I already knew my type of cancer was aggressive and had a poor prognosis from searching the internet (I know, I know) and I didn't want that confirmed by my doctor.

Of course that didn't stop me from googling the specifics of staging and grading once I found out what I was and everything I looked at shows that grading identifies how aggressive the cancer is. So if grade has nothing to do with how aggressive it is...so much the better for me.

Funny but on my pathology report it says "high grade" (not a number). I was hoping that didn't mean I was off the charts.

Thanks
Cindy

sleem
Posts: 92
Joined: Feb 2010

link 4 u
C:\UPSC\Compass Early Uterine Papillary Serous Carcinoma.mht

This link has been posted over time. Check it out. It has good history of the disease. Each of us has different backgrounds, ideas, & ways of handling UPSC. This article tells about what my journey was/is at MD Anderson with 'sandwich' method. My ob/onco told me she was hitting my USPC with all that was available with both barrels (fall of 2008). I was 1A grade 3 confined to one polyp in uterus. I'm 3 1/2 years out (4 years will be last chemo date Jan 2012). I had chemo & radiation [vaginal) (I didn't have any real issues with this treatment), nodes removed even up to aorta (11), fat tissue from abdomen & all female parts gone. For me, this is what I selected. I had not previously had any cancer or treament for it. It is a lot of info & each of us has had their means to fight their USPC. I am glad I did this after all my research. I had no spread at that time, I'm still in NED (no evidence of disease). My treatment was/is with gyn/onco (I've read this type dr. has provided more success in having more birthdays).

I limit some things in my diet, do exercise in moderation. Spoke with a nutritionist at my hospital about eating, exercise, etc.

This is a good place to receive support. It has helped me a lot from our fellow sisters.
Wish that you didn't have to be here too; but it is a great help for me. I don't post often.

maryv1119
Posts: 37
Joined: Jun 2011

Hi Shelby,

After fighting BC, I'm sorry you have to face it again.

You're one of the first people I found who had two separate uterine cancers like me.

Mine was stage 3C (and of course grade 3 - aggressive) so I wasn't given the option of treatments. I had 5 courses of cisplatin and then 6 courses of carbo/taxol, and also received internal and external radiation.

Chemo is the pits - but it did the job for me. My guess is that you know in your heart how you want to handle this choice. If both Dr's are gyn/onc's who are knowledgable and respected in their field - then I'd go with the recommendation of the one that feels right for you.

If the thought of more chemo gets you upset and puts you under stress - that won't be good for your health either.

God Bless you and heal you.
Mary V.

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Hi Shelby,

My diagnosis was Stage 1B 100% UPSC all tests negative.
My staging was done by the book which would enable me to enter a clinical trial at any time. My Oncologist did an excellent well balanced job.

It was recommended I do chemo and some form of radiation . I was handed a study that backed this up and a clinical trial to enroll in. I had all doctors and anyone I told in real life and on the internet what was going on tell me to do the Chemo. Except for Claudia and the few who posted here.

I chose observation

I'm at two and a half years with no evidence of disease. I Made all my follow up visits with clean exams and 2 Ca125's averaging 4.5 ;-) I am Grateful.

I have not seen anyone on these boards who was stage 1 UPSC who choose observation and had a reoccurrence. There have been a couple of Stage 1 a/b who posted they were choosing observation but they did not stick around past five or so posts. I have seen someone here who was stage 1a who did chemo and radiation and had a reoccurrence around two years later.

Not many oncologist's recommend observation.

Could you tell us why he was leaning in or offering that direction for you ? Did you ask Him .

Did it have anything to do with you already having chemo for breast cancer five years ago and your reluctance to go through it again ?

Some studies conclude that UPSC is highly chemo resistant and that surgery and radiation worked better . Unfortunately those two options are not always possible with extra pelvic reoccurrences.

You might read Jill's thread On management for Stage1A UPSC

http://csn.cancer.org/node/226735

About the conflicting Path reports. Not sure insurance covers a third reading.

Good luck with making this second desision and a tenuous one at that.

Grace

Shelby54
Posts: 5
Joined: Sep 2011

Thank you everyone for your insights and ideas. You all provided me with good information and your experiences and I thank you for sharing that. That is exactly what I needed to hear. Sometimes the answer is right in front of you but you don't see it until you clear out the "other stuff". I had to search a little deeper to find out what was preventing me from making a decision. I have told myself I would feel better once I have made a decision and can move forward.

I am 54 years young and plan on being around for another 30 years and know I could not sleep at night if I didn't do everything possible to possibly avoid another reoccurance with cancer and so that does include chemo. I have decided to go with the doctor who provided the second opinion. Both doctors are gyn/oncologists and very well respected in the field. I just think one is conservative and one is more aggressive in their treament styles. I am choosing to go the aggressive route, plus the other doctor mentioned I might qualify for a clinical trial for women who have had breast cancer and took tamoxifin. I am willing to help research in hopes my daughters don't have to go through what I have gone through. My husband is very supportive as he went through the breast cancer with me. I will post again when I know when I will start chemo and what kind and how often it will be.

Thanks again and God bless you all in your journey.

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Hi Shelby,

I wish you the best with your decison. I was thinking maybe your first doctor felt safe taking a more conservative approach with the Chemo having been so aggressive removing 40 lymph nodes when the recommended amount is ten.

I read here where some doctors are not even removing lymph nodes if they know you have UPSC and just going straight for the Chemo after the de bulking they are so convinced of it being systemic.

I was looking over the clinical trial I was offered for stage 1 tonight. The follow up care required having a CT scan every six months for two years along with many tests to monitor possible damage to liver ,kidney, and heart function.

That's 4 CT scans in two years.

It may be a randomized study where you have no personal say as to exactly what you will receive.

All for stage 1A with no reoccurrence yet.

My doctor asked me concerning my decision. How will you feel if you reoccur and didn't do the chemo?

I was asked the hard questions. I see you have asked those questions in the last 24 hours. It takes a lot of courage to do either path.

I wasn't offered to be a part of any study for Stage 1 for observation. Maybe they have given up on that. I would graciously be a willing participant if only asked.

Grace

Lois B.
Posts: 10
Joined: Sep 2011

Can't believe so many common threads of being two-time cancer survivors.
I had breast cancer in 1993 with surgery and chemo with no recurrence. Then in 2008 I was diagnosed with USPC. I believe it was 1b - I'd have to check my lab report to be more specific. I did the regular route of six chemos and three vaginal cuff radiations.

I'm being followed by a doctor at M.D. Anderson and have been NED since 2008.

Except for a follow-up PET scan a few years back, I'm being followed with CA-125 blood tests and pap tests. I've now graduated to every six months.

Only you can decide which road to take. I was given a copy of some hints to surviving cancer. One of them sticks in my mind - hit it early and hit it hard.

May you have peace with your decision and take one day, one second, one moment at a time.
I pray for a cure for all cancers.

Lois

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I had breast cancer op (mastectomy) in March this year and after oncytypeDX had no need for Chemo, but three weeks radiation. Was just getting round to considering 'reconstruction', as they so nicely put it. Now have just had radical hysterectomy (all gone) for Carcinosarcoma (which was called MMMT before its renaming) Stage 1a, Grade 3. Entirely contained in uterus, but am told that radiation would reduce chance of recurrence in the pelvic region by about 50%, though won't stop it recurring anywhere else. Chemo would add 10% to my chances of preventing it recurring systemically - if I have got this correctly. Am still analysing and trying to get to grips with it all. Two cancers, entirely different from each other, in one year - NOT FAIR. Friends and family all very supportive but looks like I'll have to accept the Chemo (Paclitaxel and Carboplatin) and the radiation - seems from postings that radiation is sometimes done in the middle of the Chemo, is that right? It's only 12 days since my op and my abdominal area has not 'settled down' yet. I hate the thought of my whole life having to come to a standstill for months on end. I carried on so well after the breast cancer and I thought they would just remove this one and I could carry on. Apparently not. Looks as though things are much the same in America and England - I am in London (Susan, get in touch?) Thank you so much, all, for your posts. I hadn't realised that I wasn't the only one with an aggressive endometrial cancer - though I guessed. There's almost no research done, and no clinical trials in the UK - probably because it usually only occurs in older ladies (like me/us....... )- and others are more common. Can't bear to think about reconstruction of the breast, now. Do write back.

Double Whammy's picture
Double Whammy
Posts: 2278
Joined: Jun 2010

Hello Hilajoan-
You are not alone in having both uterine and breast cancers. Mine were dx'd 4 days apart. I assume you had both at the same time as well. You will find many women here who have had both and there are several threads on this. My endometrial cancer was the common type, enodmetriod adenocarcinoma, not MMMT or UPSC. It was also stage 1a. I did not have any adjunctive therapy (just followup exams), but I had a different kind of cancer. I did, however, have chemotherapy for my breast cancer - because my OncotypeDX score was high.

So, here we are, you and I, you obviously also had early stage breast cancer but did not need chemo. I had early stage but needed chemo. You had early stage uterine cancer, but more aggressive and requires more aggressive treatment. I had early stage, but my type does not require aggressive treatments.

There does not appear to be any rhyme or reason to explain this crap shoot (as Maggie calls it), but please be assured that you are so not alone - and that does help as you go through this. There will always be someone here who understands.

Suzanne

HellieC
Posts: 434
Joined: Nov 2010

Hi Hilajoan
I am so sorry to hear that you've been diagnosed with two different cancers within the same year. You're right - it isn't fair, as I'm sure the other ladies who have been diagnosed with both breast and womb cancer on this board will agree!
I hope you fill find a lot of useful information from the ladies here. I believe it is quite normal to "sandwich" chemo and radiotherapy (the usual patttern seems to be 3 cycles of chemo, then radio, then a further 3 cycles of chemo).
I am in the UK (on the south coast). Although my womb cancer was adenocarcinoma, rather than MMMT or UPSC, I have received 6 cycles of paclitaxel (taxol) and carboplatin and it is perfectly do-able. I am 10 months post treatment for a second recurrence and currently no evidence of disease (NED).
You will get through this and all the ladies here will help and support.
Kindest wishes
Helen

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