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Tumor has doubled in size (Recap of Lost Posts, Topic Created by LadyMox on Nov 27, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.


Nov 27, 2018 - 12:45 pm

After all that good CA125 response my large tumor has doubled in size. They will try doxil-avastian, though seems quite hopeless now :(



Nov 27, 2018 - 12:50 pm

It's in the mesentary so they

It's in the mesentary so they can't surgically remove it



Nov 27, 2018 - 1:27 pm

LadyMox, I am so sorry to

LadyMox, I am so sorry to hear this.  Hugs dear one. 



Nov 27, 2018 - 2:28 pm

LadyMox, this is distressing

LadyMox, this is distressing news. I'm so sorry! What does your oncologist recommend beyond Doxil/Avastin? I know there was prevoiusly some discussion about radiation, which your onc didn't endorse, but it may be time to revisit that topic to get this thing under control. You are in my prayers. B



Nov 27, 2018 - 3:04 pm

The doctor has said nothing

The doctor has said nothing about radiation yet but I'll see her on Thursday



Nov 27, 2018 - 3:14 pm

Lady, I'm so sorry.  It

Lady, I'm so sorry.  It sounds as if it is time for radiation oncologist.



Nov 27, 2018 - 3:27 pm

Lady, can they get a biopsy

Lady, can they get a biopsy on it to send out for genetic testing?  That might determine whether you would benefit from metformin or herceptin or both.  Herceptin has only mild side effects, is very well-tolerated I hear.  There are studies of using Avastin and Herceptin together.



Nov 27, 2018 - 3:36 pm

Good point. If it's that big

Good point. If it's that big there's no reason they can't grab a chunk. 



Nov 27, 2018 - 3:44 pm

I will ask them on Thursday

I will ask them on Thursday to see if they can take a chunk for tumor testing 



Nov 27, 2018 - 4:13 pm

You might also ask about

You might also ask about interperitoneal chemo. And, as others have said, it might be time for a second opinion. Best wishes, B



Dec 06, 2018 - 6:30 pm

tumor growth

get a second opinion at a recognised cancer center, never hopeless



Nov 27, 2018 - 3:46 pm

Lady, im so so sorry you had

Lady, im so so sorry you had to get this news. Youve been through so much. These other ladies have some advice thay sounds good. I hope your doctor gives you options and works with you on thursday.




Nov 27, 2018 - 4:01 pm

Don’t lose heart

There are many options these days. Don’t give up hope. Perhaps time for a second opinion. 



Nov 27, 2018 - 4:04 pm

Sorry to hear

Like the other ladies have said this is distressing.  Let's look for your team to come up with a good plan for fighting this.


Red Corvette

Nov 27, 2018 - 4:39 pm

Damnand a few

Damn, that’s not what you wanted to hear. As the other ladies said, there are many other treatments including immunotherapy drugs for this cancer and you just need to find the right one. Definitely second opinion time, with you being in New York, you could try to connect with Sloan Kettering which is a major National Cancer Institute facility. When Mrs. Red was diagnosed and going through treatment and depressed, I’d ask her but how do you feel physically this minute and most of the time she’d say I feel fine and I’d say, see it’s going to be alright. If at this minute you are warm, fed, not in pain, have a roof over your head, have a friend or partner, and have a few pennies in the bank, you’re going to be alright. Sending you positive vibes.




Nov 27, 2018 - 5:59 pm

So sorry

but don't give up. Please do consider another opinion. There are women on this site for whom it made all the difference. 



Nov 27, 2018 - 6:28 pm

I'm going to sound stupid, but ...

This mass was absolutely determined to be cancer? And is this a CT scan or a PET scan? (I'll check ... I'm sure you mentioned it.)

EDIT ... CT scan.

I agree that it might be better to know this enemy; whether through biopsy or other testing. Your doctors need to know what is making this thing tick.



Nov 28, 2018 - 3:48 pm

Yeah cancer, plus it doubling

Yeah cancer, plus it doubling in 3 months is not good. 



Dec 06, 2018 - 6:33 pm

tumor growth

Can you get to Boston General or Sloan Kettering.  Do it for yourself



Dec 28, 2018 - 11:38 am

Hang in there

Not the news you wanted to hear I know. Totally understand...same here my tumor marker is back where it was 12 months ago and the PET showed progression again!! So what to do!! Try and stay hopeful, listen to your care team and what the plan is and just take one day at a time. If you have prayers warriors get them praying. Sending you lots of love and hugs xoxoxo



Nov 27, 2018 - 6:31 pm

I'm sorry. I agree about a

I'm sorry. I agree about a second opinion. 



Nov 28, 2018 - 6:40 pm

I could probably go to Sloan

I could probably go to Sloan but would be many hours away, and Roswell Park is supposed to be a top cancer center also.

Yes I'm 42. I weep for the years I'm likley to lose to this cancer and at the rate it's growing I fear I only have months now.



Nov 28, 2018 - 6:46 pm


Hours away may be worth your life. Sloan will only take rare cases. Sounds like you would qualify. I would think it would be worth a second opinion. I know it’s a hassle to get in somewhere else and collect all your records but your life is worth it. 



Dec 06, 2018 - 6:35 pm

tumor growth

get a referral from your team to be seen at a cancer Center now



Nov 27, 2018 - 9:00 pm

Thinking of you! Try to keep

Thinking of you! Try to keep focused on the next step.



Nov 27, 2018 - 9:09 pm

They can test from d&c sample too

Hi ladymox, I am so sorry to hear that. I haven't logged on in a while because I have been busy with my daughter and mum but I was hoping you were going well.

My mum still hasn't had surgery yet they say 7 chemo then surgery for her. However they did testing on her original d&c sample and it was her2 positive so they added herceptin. Ask for your d&c to be tested for her2 and other markers that respond to immunodrugs. I think her2 is the main one. They should be able to turnaround  the test in a few days so then hopefully add herceptin to treatments asap.

Hope you are feeling ok. This is tough. You will get through it, be strong.



Nov 27, 2018 - 10:17 pm

I'm sorry you received this news.

I've found that when I can't process the news, or can't change the outcome, I just let it go.  I don't wish to offend anyone with religion, so I'll simply say, my faith allows me to offer up my care to my God.  However you believe, or not, please don't fight right now.  Wait, breath deep, and talk with your doctor.  It's possible that there is a plan B.  Please know that there are many of us that will gladly help you feel OK with this latest news.  If you are really scared, or sad, think of me, Donswife48, ask me to share your pain.  Sometimes, when someone really believes someone is on your side, it helps.  Hugs Nancy



Nov 27, 2018 - 10:32 pm

Not what we were hoping for you

Others have posted some possible next steps for you to consider. I hope that you'll think about some of these suggestions. In the meantime, know that we are with you in fellowship as you move forward with treatment.



Nov 27, 2018 - 11:20 pm

I am so sorry to hear your

I am so sorry to hear your news, LadyMox. I don't understand how your CA125 can improve such drastically while the tumor was growing. It does not add up. I hope you will follow the wonderful advice ladies have provided and get a second opinion about the next steps, get genomic profiling of the tumor, and investigate the possibility of using radiation. I also think that starting Metformin and Megace might be a good idea. The side effects are no negligible that I dont think it would hurt. 



Nov 28, 2018 - 3:57 pm

I don't understand why my ca

I don't understand why my ca-125 improved while it doubled in size. Plus I had other postive impovments like I stopped bleeding all the time.  Both the endrometral lining and the tumor tested positive for endometrial adenocarcinoma or "pathology showing this is a gynecologic endometrial malignancy".



Nov 28, 2018 - 5:25 pm

I wonder if there could be

I wonder if there could be two things going on.



Nov 28, 2018 - 7:44 am


Oh my gosh! I am so very sorry! You were afraid of getting this news....

I hope you can get a second opinion about what your next treatment options are. Someone on this forum reminded another of us that remember you are the same person after you got this news as before so please don’t give up. My heart goes out to you and your husband as you work with your healthcare team to fight this God awful disease. I am keeping you in my prayers. 





Nov 28, 2018 - 9:11 am

LadyMox, I am hoping for the best for you.

The wonderful women here have given you great advice. I am sorry to see you going through this, but try to stay focused on the next step and remain hopeful.





Nov 28, 2018 - 11:53 am

I have no hope. My 13 cm

I have no hope. My 13 cm tumor doubled to 26 cm on taxol/carbo while my CA125 normalized. I'm scared that I won't even make to Easter.



Nov 28, 2018 - 5:50 pm

Second opinion warranted!

i am so sorry that you are going through this.  CA125 is not always a good marker but the number going down and the tumor doubling defies logic.  As LisaPizza said I am wondering if there aren’t a couple things going on.  are you prone to fibroids?  Fobroids can grow rapidly especially if hormones are out of whack!

i will be praying for you!  Try to keep your spirits up!



Nov 28, 2018 - 6:04 pm

They tested the general mass

They tested the general mass and there was cancer in it before. I think I am prone to fibriods though. 



Nov 29, 2018 - 4:58 pm

I'm Confused

I'm not sure what you mean by "they tested the general mass."  Did you have a D&C, an endometrial biopsy, or some other type of surgical procedure that provided a tissue sample of your tumor that was reviewed by pathology?  It's my understanding that the only way endometrial cancer can be definitively diagnosed is through evaluation of a tissue sample.  And it's my understanding that endometrial cancer cannot be properly staged until after surgery, so I'm puzzled how they can be sure that your cancer, assuming that the diagnosis is correct, is stage 4B.  I would strongly recommend a second opinion from a well-regarded gynecologic oncologist at another institution.  Something sounds off here, and if I were you, I would want to get to the bottom of things so that you are in a position to make well-reasoned, fully-informed decisions about what is likely to be the most beneficial treatment for you. 

Best of luck!



Nov 28, 2018 - 6:20 pm

I agree that it sounds like a

I agree that it sounds like a mix of things. It is possible also that your tumor is platinum resistant. There are all sorts of other chemotherapy and immunotherapy drugs that they can try. I was allergic to Taxol and had adriamyacin (old type of doxil) and carboplatin. Often they pair cisplatin and adriamyacin together. If you have a decent quality of life right now there is always hope. Praying for you.



Nov 28, 2018 - 7:26 pm

Please do not give up hope. 

Please do not give up hope.  I agree with you on going to Roswell Park for a second opinion right away, instead of Sloan Kettering.  People hear that you live in NY, and they don't realize how huge NY state is, how far you are from NYC.  At this point, if the genetic testing hasn't been done, and could be done on the original sample, it would be a good idea.  They can go in laparascopically to get a biopsy of the mesenteric tumor for genetic testing, if warranted.  Genetic testing could guide choice of next chemo.

Excisional surgery for mesenteric tumors is sometimes done.  For an opinion on whether it is really inoperable, the surgeons at Roswell could consult with the surgeons at MSK using your scans, to see whether it is truly inoperable at this time, without you having to travel to NYC.



Nov 28, 2018 - 8:27 pm

Ladymox, have u had a Pet

Ladymox, have u had a Pet scan? It's the one where the cancer lights up. As opposed to a standard c.t scan. 



Nov 28, 2018 - 8:39 pm

No just CT scan

No just CT scan



Nov 28, 2018 - 9:20 pm

There is still hope

Your news is quite disheartening and I've been praying for the right thing to say when I'll admit to being afraid to say anything in light of what I've said to you in the past. I don't want to give you empty words when what you need is practical help with what to do next.

I agree with others who have noted that you need a second opinion because clearly you are resistant to the chemo you've been recieving and the cancer has progressed to the point that surgery or the localized treatment radiation offers isn't going to be helpful.

What I would suggest is that you really, really need to have genomic testing done. It would help to pinpoint what would work on your tumor and what clinical trials out there you might be a good candiate for. Did you see on the news the other day about a new drug that treats tumors based on type of tumor mutation rather than where the tumor originates? It's called Vitrakvi. Genomic testing might find if you'd be elibible for something like that or immunotherapy, other chemo drugs, and who knows what else that is out there in clinical trial stages. You really need something outside of the "standard of care".

I wouldn't put as much stock in Rosewell as you are doing as regards uterine cancer because gyn oncologists are not thick on the ground in WNY. I had resisted transfering to Dr. Ackers when CCS had it troubles because I knew she was about to be overwhelmed. Luckily my doctor left CCS before I had no choice but to transfer. Places like MDAnderson, Cleveland Clinic, Sloan, etc. have more expertise to offer in part because they have a larger pool of the kind of specialists we need. A second opinion from places like that may prove lifesaving for you.

There are options out there for you in spite of this disappointing news, so don't let a busy doctor write you off. Don't write yourself off either. If you have to go down, go down fighting. Do it for yourself, do it for your husband, and do it for those dreams you have.



Nov 29, 2018 - 8:16 am

I don't have that type of

I don't have that type of money to fly to another state, actually with the new drivers license rules I don't even think I can fly anyone as they require a "real ID".   I already asked about genetic testing and she was supposed to give me something to get it done, but she never did. I'll ask again. I don't know how I can test my tumor when it in me and growing but I'll ask about it.

I'm so distruaght that I can barely function, with my ca125 dropping so well and my doc seeming confindant it was shrinking I was so unprepared for it doubling. Even my husband trying to be ever postive that I'll get to surgery and recover broke down. This damn cancer is going to take me so young and feels so unfair.



Nov 29, 2018 - 2:49 pm

Genetic vs Genomic

There is a difference between genetic testing where they test your blood or saliva and genomic where they need part of the tumor to test.

The one you need most at this point is genomic testing. If they don't have a piece of your tumor for testing, they should be able to get one, like Der Maus said, by doing a biopsy. Your tumor is certainly big enough. This is what you have to discuss with Dr. Ackers. Yes she has a plan for different chemo, but this kind of testing would tell you if it would be effective or not or if there is a more effective option out there for you. Trial and error is not a good care plan!

You could start on the new chemo while waiting for the testing results or ask about going on Megace to hold progression of the tumor's growth while you wait or do both. You have the hormone sensitive type of cancer so even if you haven't been tested for sensitivity you should qualify for this kind of therapy because of your advanced stage. That's in the standard of care and I don't know why you weren't given it from the beginning because it can be taken along with chemo.

Foundation one testing is expensive, but it's worth finding out what help they would give you with that. I believe someone mentioned that they offer a payment plan as one option and again, it would be worth it. 

Here's an article about genomic testing I think all will find interesting:


My takeaway is that this should be standard of care and covered by insurance, but that's still down the pike a bit. The thing you need to do is buy yourself any time you can any way you can because, as many of us have seen, changes in care are happening quite rapidly in just the past couple of years. You have to fight both this beast and sometimes not-up-to-date doctors with everything you have. It's worth the effort! Genomic testing, while not a treatment itself, really would serve to narrow treatment options to what would actually be effective for you. It's awful that you've lost all of these past weeks on a chemo regimen that wasn't helping. Even so, it's not a lost cause if you can just find it in yourself to keep at it. Easy for me to say, I know, but it's the truth.



Nov 30, 2018 - 6:54 am

I just checked and real I'd

I just checked and real I'd doesn't take effect until 2020, so you're still ok to fly. I completely understand you being distraught. Maybe have your husband read some of these responses and together put together a plan to get good treatment. Or grab a friend who can help do research and phone calls. 



Nov 29, 2018 - 8:32 am

Ladymox, how did they

Ladymox, how did they diagnose your cancer? Did they take a sample and test it? Like a d&c procedure (day surgery, no incisions, just a camera and take a sample). If so, they still likely have the sample and can to tests on that, e.g. test for estrogen, her2 (therefore herceptin  use) 



Nov 29, 2018 - 8:37 am

When I was at a low point

When I was at a low point (really anemic and just felt awful after chemo #6) I was food shopping at a local store. With my head scarf, and the way I looked, I guess it was obvious I was getting chemo. A lady came up to me and told me to stay strong and not give up. She had been diagnosed with triple zero breast cancer, stage 4 over 6 years ago. She had just had a baby and the doctors were giving her just a few months to live, and no reason to do chemo. She insisted she wanted chemo anyway, and to the shock of the doctors she responded. She was able to get surgery and over 6 years later she still has no evidence of disease. She said there is always hope. Her story was so encouraging at a difficult time. 

If your insurance will allow it see if you can get a PET. It shows active spots where cancer is present and if they can't do a biopsy I think that is important to know. My Dr insisted on it when the CT scan showed my vaginal cuff still had a bump. It turned out it was an area still healing after surgery.

I'm not sure what else to say except you are in my prayers.


Kathy G

Nov 29, 2018 - 9:58 am

Oh LadyMox...I am SO sorry to

Oh LadyMox...I am SO sorry to hear this! It must be terrifying...especially at your age. I have followed your postings and your journey has been one of the more difficult ones.

It's just not fair!

I do not have the knowledge or experience many of these ladies have, but I agree with their suggestions. Asking questions and exploring resources. I would think at this point you are still in shock which can immobilize us to a certain degree.

I would definitely seek a 2nd opinion and different treatment centers. Hell, if I could afford it I'd come up there and drive you to Sloane myself! But my point is the old adage 'two heads are better than one' and I would want a oncologist or team who thrived on a challenge and advocated on my behalf rather than one specialist who it seems wasn't very thorough in your care. I hope me saying that but it sounds like she just gave you the basic info without offering any referrals for 2nd opinions, a PET scan, other therapeutic interventions....or HOPE! If I had a 42 year old patient faced with such a dire diagnosis I'd be pulling every trick out of my hat to try to help while bearing in mind I didn't want to instill false hope.

But there is ALWAYS hope...

I will be praying for you and hoping you can get to the point of fighting this rather than accepting it. But also know I do not judge any decisions you make as I do not walk in your shoes.


Just hate to see someone so young and pretty go thru this.



Nov 29, 2018 - 4:30 pm

Let me preface this ... I am not a doctor.

But what this is indicating is that CA-125 may not be the most accurate test for you. That in itself is not unusual. CA-125s are notoriously unreliable for many women; even those with ovarian cancer, for whom the test was devised. It's galling to realize that there is no special test for endometrial cancer that we can use. I think some places use another test, though, HE4, I believe? But that is not widespread.

You are also apparently plat-resistant. It can happen. There are other ways to get around that, though; other kinds of chemo. Carbo-Taxol is simply the first treatment most doctors use. It may be a litlte hit or miss to see which one or ones will work best for you. However, many women are using these other treatments and getting good results.

As for the tumor itself, I have read of women who were told that it could not be operated or addressed at the moment, but when treatments worked, it turned out that they could have surgery or targeted radiation. First in that case, though, would be to see which treatments work.

As for Sloan-Kettering, I understand. Buffalo is  ... what ... maybe six or seven hours from NYC? And that is in clear traffic. I can assure you that NYC traffic is usually not clean and easy. :) Not everyone can afford to travel miles to another facility. The one you're using is not exactly a bupkis facility! 



#33 (or 30 ... not sure) is no slouch. I do not believe any of the Top 100 Hospitals are slouches.

You might, however, want to use another doctor if you are not happy with the care you are getting, or at least get a second opinion. And a doctor with horrible bedside manners may not be the best fit for you.

Sometimes, it takes a few days for doctors to put together an alternate plan. You might want to see what they come up with. Hoping and hoping this new plan will do the job!



Nov 29, 2018 - 6:35 pm


Rosewell Park is an excellent hospital for cancer treatment, but it is ranked for its treatment of children's cancer whereas MSK was ranked in 2016 as one of the top hospitals specifically for treating gyn cancers. 

My daughter had cancer surgery at MSK and the problem isn't the expense of getting there (we drove the southern route below the finger lakes), it's staying in NYC. Hotel costs are in excess of $300/night depending how close you stay and what's going on in the city. That doesn't include parking. A consult isn't necessarily a multiday event, however, so maybe an overnight trip would be doable? It really is awful that such an amazing hospital is in such an expensive place! I don't know how it compares to going to MD Anderson.



Nov 29, 2018 - 7:58 pm


Doesn‘t Sloan have some special housing for patients?  I know MD Anderson does but it’s kinda hard to get in. Fortunately we had friends in Houston. Would Dana Farber be closer?



Nov 30, 2018 - 12:40 pm



Took my first does of Doxil yesterday with no issue. Couldn't get the Avastian yet because my insurance is still reviewing it and my blood pressure was a tiny nudge over what they wanted. Taking some blood pressure medication now that should do the trick. I will get a just Avastian does in 2 weeks hopefully. Seems you get Doxil once a month and Avastian every 2 weeks. My hair might grow back on Doxil/Avastian. They won't scan for about 3 months though. They were against hormone blockers.

I am looking into possiblties of getting a second opinion but not sure how feasible it is. Though since I'm not really working now I only have so many options.

I pushed for genetic and genomine testing and got them to agree. They sent my previous biopsy sample for genomic testing and said the results should be back next month. The genetic testing is via some affiliate of Roswell and could take some time to get the results but the process has begun, I should get letter from them soon.

As bad as it growing was it slightly less then doubled and didn't displace any organs. The only new nodules was on my flopian tube area. The nodule on my adrenal gland remained stable so has shown to be benign. The growth was all local. If it wasn't in my mesentary this wouldn't be so hard to remove, damn its choice to set up shop. I have to hope the combo of Doxil/Avastian can not only slow it down but shrink the tumor this time.



Nov 30, 2018 - 4:28 pm

I am so glad you are taking

I am so glad you are taking steps forward with this stupid cancer. What a fighter you are.  I am glad your looking still at having a second opinion. Im also glad you can see the positive in that your hair might grow back.

You are doing what you need to do and thats good. I dont know what its like to have a reacuance but dont forget your not alone on your age.  Im with you on the age thing.  It was so hard to get my second cancer at age 43( i think thats right). There was a time i had to wonder what would happen to my kids (age 9 and 12 at the time) if i died.   Thats what kepted me fighting.  All the things you think about loosing might just help you fight this stupid beast so you can have more time.  One day at a time my sweet. You can do this.

Hugs Janae



Nov 30, 2018 - 5:59 pm

Online second opinion program

LadyMox, if you're interested, Dana-Farber has an online second opinion program. It's there for people who want the benefit of world-class oncologists looking at their case, but can't or don't want to travel to Boston. Here's the link:

Dana-Farber's Online Second Opinion Program



Nov 30, 2018 - 7:55 pm

Together we can

What an excellent and helpful suggestion! I had no idea that something like this was a possibility. I love this group of ladies!

Ditto what Janaes said. I'm so proud of you for pushing for testing that you really need. 



Nov 30, 2018 - 8:07 pm

But it doesn’t take insurance

That second opinion program doesn’t take your insurance b



Nov 30, 2018 - 7:22 pm

Get your Medical Records now

Others have given you very good suggestions. I can only imagine that you are grief stricken, distraught and depressed. Take action to get a second opinion from a center of Excellence for Gynecologic cancer. You don’t always need to actually travel there in all cases if the second opinion doctor has your records. They can consult with your current physician. 

I don’t think it has been mentioned that you need to request all of your medical records from the clinic’s and hospital’s Medical Records Department. Fastest method is to go to their office with the second opinion’s ( name, address, phone, fax, email) . Sign the Release of Medical Records form. Get notes, procedure notes, doctor office visit notes, labs, pathology reports, pharmacy records, scans and images, consult notes, admission and discharge summaries etc. Time is of essence dear LadyMox. 

Also I think that 401k withdrawal can be made for medical needs with little or no penalty for early withdrawal. There are cancer support organizations that can help with some expenses.

Thinking of you as you put one foot in front of the other to get your second opinion expeditiously. 




Nov 30, 2018 - 10:11 pm

I guess i dont know for sure

I guess i dont know for sure whats best  but i liked Nothwoodsgirl's suggestion about getting your records sent over to another clinic insteed of going there. I have heard others do that.  If your not able to travel that might work. Of course its your desision and want to respect what ever you decide.  



Dec 06, 2018 - 1:27 am


Hi LadyMox,

Memorial Sloan Kettering NY offers remote second opinion. It costs 1500$ without insurance. Wishing you well.




Dec 06, 2018 - 8:11 am

Universe, thank you for the

Universe, thank you for the information, that is what this is all about.   


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