BC Mets to Uterus - Roller Coaster Ride

[Joanne S]

Hello all, I have not been on this site for weeks. A lot has been going on lately and I've been soo very overwhelmed.

It’s been very difficult adventure – Trying to figure out which path to take since my gyn/onc and my breast/onc are not in agreement with my prognosis or treatment. As most of you know, after spotting and having a D&C, I was diagnosed with BC mets to uterus last August-which is quite uncommon. In September, I had a pelvic by the gyn/onc but was told I was not a candidate for hysterectomy as the cancer is beyond the uterus and too close to the bladder. Radiation was recommened by the gyn/onc but I am very hesitant to go that route of treatment. In September, my bc/onc put me on Affinitor and Aromasin (hormonal therapy) and I immediately stopped taking Arimidex (after 4+ years).

Although my Janurary/February PET and MRI scans showed slight improvement, the gyn/onc pelvic in the first week of March actually revealed progression at the base of my uterus and now tumor is touching the bladder. That was shocking news. Needless to say, I’m still not a candidate for hysterectomy. Gyn/onc is unable to remove my uterus without damaging the bladder and possibly the rectum – so definitely no surgery. The gyn/onc again urged immediate radiation. At my insistence not to sugar coat his opinion, he feels that my prognosis is very poor – probably less than a year – but bases his opinion on his experience with gyn cancers, which is not exactly (ILC) breast cancer to uterus.

My bc/onc on the other hand does not feel my life expectancy is that short, and she says there are many available chemo options we can try. I am still hesitant to do the radiation as the gyn/onc says the radiation is very damaging to the pelvic walls, bladder and rectum and it is very painful. Additionally there is also a good possibility I may still lose my bladder and/or rectum. If that’s the case, why not skip the radiation and just do surgery to remove the bladder? Don’t really want to go that route, but will do whatever is necessary to save/extend my life.

I did have side effects, but did quite well after the first three chemos. Last week, my week off of chemo, I became quite ill. Neuropathy set in big time in my hands and feet. I’ve been extremely weak and fatigued. Just getting up to go to the bathroom has been a major effort. Easter Sunday my hair decided to come out in clumps. Finally, I started feeling a little better last Saturday, but my bladder felt a lil different. I had urgency to urinate often, but didn’t release very much urine. No pain, no bladder spasms, no blood in urine, and no other symptoms. Suddenly late Saturday evening, I began running a fever 101.9. I went to ER and was admitted to the hospital.

As I suspected it was a bladder infection so I’ve been on IV antibiotics for the past four days. Yesterday the gyn/onc came to the hospital and gave me a pelvic. There is very Slight improvement so he is suggesting I have more chemo: 3 treatments ( 1 x per week) of Carboplatin and Taxol, then a one week break and then a pelvic exam to see if there are any changes. I honestly don’t think he feels hopeful. Since my MRI and PET scans did not pick up the progression at the base of my uterus, it must be evaluated via pelvic exam. At this point, if there isn’t enough improvement, I will have to go the radiation route or another route. I just have to wait and see.

The last four nights, I am still running very low fevers. They only last a couple of hours. The doctors cannot determine if these low-grade fevers are related to the bladder infection, cancer, or another infection in my body, but don’t seem to be concerned at this time. Blood cultures have not grown anything so far. I do however, wonder what is causing these fevers. So they want me to delay starting chemo for another week---gee I hate doing that.

I was released from the hospital today and will start antibiotics in pill form tomorrow. Mentally I feel like I’m on a never-ending, run-away, out-of-control, crazy roller coaster ride, and just don’t know what might happen next. I’m afraid because don’t know if I’m going to survive this ride or not. What a horrible feeling.

I sent out copies of all of my records for a second opinion today - hopefully I will hear something very soon. I’m trying hard to take it one day at a time and remain strong and positive for my 2 daughters. ages 22 and 27. I’ve been very open and honest with them on every level except I have not mentioned anything about my uncertain prognosis. I feel there is no need to have them worry about that until I know. Since both of my oncs don’t agree with each other---- makes it more difficult and crazier for me.

I would love to hear your thoughts, ideas, suggestions, advice, anything!
Thank you! Joanne

['lizbeth]

Wow, that is alot to deal with.

I remember I had been scared to death at that time as I had a pelvic ultrasound and an endometrial biopsy right after your news. I felt like I dodged a bullet when I got the all clear.

I just don't understand why they didn't remove the uterus. Crazy. Well, people have bladder cancer and they remove the entire bladder. Your cancer hasn't gotten to the bladder.

I don't like that your two medical advisors are so far apart. Eager to hear the news of your second opinion.

I'm so sorry about all the awful side effects. I hope that you find a solution that works better for you.

Sending love and healing!

[BonnieR]

You are certainly entitled to feeling powerless right now! Hopefully that will resolve with a tie- breaking third opinion. The sooner the better. It always feels good to have a plan in place. You are in a place of such indecision. Can you try hard to quiet your mind and open it for insights or "signs"? It may sound trippy but I find that clearing the channels sometimes provides clarity You will hear something random that gives you a new perspective. I'm not real religious but I like the term "be still and know that I am God". Can you be still and see what He has to say? It will come through others Once a comment by a social worker was like an epiphany for me. She said "if it was a loved one, what would you want THEM to do?"
I hope you find answers and peace of mind. Soon. Keep the faith

[IrvineFriend]

Hi Joanne,

I would have a hard time listening to another opinion after just getting a shocking and harsh progronisis. I'm sorry you had to get that kind of news. I've learned from the women here that one doctor's opinion is not always accurate and can be downright wrong!

Your other onc has a different opinion - whew! - so you're doing the right thing getting a 3rd. As Bonnie suggested, there are some great guided meditations on youtube to quiet the mind and be open to answers, and to be in the now.

You have the week to regain your health and get some answers. I'm sending prayers your way!

-Julie

[NEDenise]

Oh Joanne!
What terrible, confusing, and terrifing news to have dumped on you all at once. Add the UTI...and I am in awe of the strength and courage it took just to post this thread. You are one STRONG lady, my friend!

First...I have absolutely no doubt, that once you have all the right info...all your treatment options and expert opinions in order...you will fight this latest battle as valiantly as anyone ever could.

Next...as a mom myself...I can't tell you how much I admire your decision to spare your girls the prognosis "indecision" until, and unless, it becomes more clear. No need for them to focus on negatives, when there is so much positive energy to draw on.

Now...I'm wondering...since you live near a big city, I presume there must be a major cancer center or two nearby. Is there a chance that you might be able to schedule appointments at centers where ALL the oncs on a case...rads, gyn, b/c...meet as a group to discuss the patients they have in common? It seems to me (no medical expert, of course) that your current situation is complicated enough that having everyone in the same room, and making sure they're all on the same page is important.

I know, I feel better knowing that my docs all meet regularly to discuss my b/c and brain met treatments together.

Also...again, no expert here...but my mother-in-law is a colon cancer survivor...had to have part of her colon removed, a complete hysterectomy, and there was some damage to her bladder from the radiation. And yes, I remember her saying at the time that the radiation was QUITE painful. She still suffers from both bowel and bladder frequency and urgency...but...she's alive and in remission 6 years later. Everyone is different...but information is power...so I thought I'd share her experience.

And finally...please know that I'm sending all the strength, healing energy, and BOLD prayer I can muster to you! Try to relax and heal...
Denise

[Joan M]

Joanne,

I've been thinking about you this last week, and glad that you're now home from the hospital.

Pressing the gyn/onc about potential problems from radiation gave you more information to decide what to do. Docs give probabilities of serious SEs, but I often feel that the problems end up occurring more frequently. And in this case they would be very serious.

I hope that the chemo continues to shrink the tumors, and if you progress another chemo will work for you. If the tumors shrink enough, your uterus can be removed. Perhaps a second opinion will cast more light on the different opinions of your doctors.

Love,
Joan

[tricia keegan]

Joanne I don't have any advice but wanted to send you good wishes in making your very hard decision on treating this.

[jellybean]

I would think that the breast cancer onc would be more knowledgeable, since it is breast cancer. Regarding radiation, why not get an opinion from a radiation oncologist, since that would be the doctor who would perform the radiation? I hope things are going better for you.

[Ceesun]

Joanne, I wish you the best and hope that a treatment plan can be refined for you. Have you checked into Karmanos or the University of Michigan? It seems they deal with complicated cases....where are you being treated? I receive my treatments thru Oakwood Hospital. Fondly, Ceesun

[Mary Jo]

Hi Joanne....I'm so sorry you are having to go through all this and deal with such a heavy load. Prayers for wisdom to know what to do next and prayers for you to feel better. Love and hugs.

Mary Jo

[CoolBreeze]

Hi Joanne,

I've been living with mets a couple of years now. I've learned a couple things. One is never to interpret your doctors/techs/nurses emotional states when it comes to you. They might very well be thinking of missing their lunch as they examine you and thinking "my God, I'm starving, am I ever going to get to eat?" and you are (naturally) interpreting that as "he's feeling it's hopeless." They should be thinking of only you but they aren't always. They are human too. So I never go by what I think somebody's emotion is, I only go by their words.

But you have had some words, huh?

The doctor who gave you a "less than a year" statement - I don't know what to say about that except that doctor doesn't know how much time you have. My oncologist will not guess what my time on earth is and how can he? He has been an oncologist for 17 years, he's seen people live longer than expected, shorter than expected, seen people survive who shouldn't, people die who shouldn't.....how can he know what will happen to me? They can tell you statistics but as we all know, we are not statistics. They don't know what category you belong to so guessing this early is just wrong for any doctor to do, if you ask me.

Now, saying that you have a life-ending illness is honesty, saying WHEN it will happen is dishonest. Unless you are within weeks or showing signs of end-stages, they have no reason to say that. And, you clearly aren't.

I have had mets in my liver, abutting the portal vein, had resection surgery, ablation, had it grow back, on chemo #7 - and nobody will make guesses with me. I've been living with it for 2+ years now (cancer for four) and I'm sure I have time left. Statistically, I have one year left, but statistics are for mathematicians, not people.

There are many chemos they can try that will shrink that cancer down and then do the surgery safely. Am I reading your post right - you have only had three chemo doses? You are at the very start of this and so have a long way to go. It is natural to start thinking about your mortality and adjusting for that but your oncologist who said there are many other treatments and chemos to go are right. That's the one I would pick.

I am on my 7th now. Remember, your cancer may be in your uterus (mine is in the liver) but it's still breast cancer and should be treated like breast cancer.

I can't tell you what decisions to make, only the way my mind works since you asked.... I think since radiation is irreversible and holds a chance of difficult damage, that will impact the rest of your life, so personally, I might stick with chemo, see if you can shrink it and then see if they'll do a hysterectomy. The fact that you can do surgery is a gift a lot don't get. I'd try to stay away from bladder/rectum surgery if possible as that would impact just about everything you do.

If you look at your signature, you got fevers in '07. So maybe it's just something your body does when stressed.

I have advice about your chemo side effects, having been through it. First, I am not a naturalist/alternative treatment person AT ALL. But, l-glutamine has helped with neuropathy and studies done in UCLA seem to show that's true. You buy it in powder form at a health food store, and then take it the day of chemo, the day after, and the day after that, in large doses. You can google for the dosage if you like. It does not interact with anything you are taking. After three years of straight chemo, seven different ones, I hardly have any neuropathy. It worked the best on the carbo/taxotere which is what you are on. It works almost immediately so you'll know.

As I have gotten sicker, I am less able to drink the glasses of water necessary so I've slacked off but you can try it. My neuropathy is very mild anyway, mostly muscle twitches (fasculations) which are super rare anyway. I don't hardly notice it.

Also, c.diff is a HUGE problem in hospitals, in cancer patients with low white counts (which might be why you are having fevers) and in people who take antibiotics. I strongly urge you to take probiotics (culturelle and florastor) and eat yogurt daily. Trust me, c.diff is not an infection that you want, and I got mine after I had a bladder infection.

Those things may or may not help as preventatives but none will hurt. (make sure the florastor is the capsule kind as it's a yeast). After I had it I was told to take it by my infectionous disease specialist and you can google and see it for yourself. My c.diff was so bad I was in intensive care, I was told I was going to have my colon taken out if my blood pressure dropped one more point. Thank goodness it didn't, but I was ill for months after that, sicker than cancer has ever made me. And, I can't help but think my QOL would be better now if I'd never gotten it. If you start having any diarrhea, immediately ask for a culture.

Good luck. The whole thing is really scary, nightmarish even. But oddly enough, we can adjust. It just takes some time, much more than four months. Once you make a decision you will feel a bit better. Personally, I would go with the doctor who says there are a lot more treatments rather than one who is negative and putting you in the grave in a year. It is highly unlikely for you to be dead in a year at this point. And, there are a lot of treatments left to you as I well know. Including the famous TDM1.

Have they done a biopsy to see if you are still HER2+? Cancer can change, and if you are, maybe perjeta is in order. Seems to have helped me and my cancer seemed intractible.

I think it was very smart of you to get a second opinion. I think hearing other options or a tie-breaker will be helpful. And, I personally would not choose a negative/you're gonna die/by the numbers type of doctor. That's just my style - I want to hear the truth and what statistics say of course, but I don't want a doctor who doesn't believe that I can beat those odds. My oncologist is a believer in me. So I would be wary of the gyn/onc and her certainty of your lifespan.

Just my opinion and I wish you the best of luck. Tell your daughters, they don't need the exact details of the date of your death. They will want to know.

*hugs*

[Becky]

Ugh. Are you still on Herceptin? Are the mets Her2+? If so, add some Her2 agent in - maybe TDM1. Can they put chemo inside the uterus. I know that sounds harsh but can they? Can some targeted radiation be used to shrink the tumor by the bladder so that you can get a hysterectomy and then they put chemo in the peritinal space. That's what they do for ovarian cancer that has spread. I know my thinking out loud is alittle wacky but you also have a rare spread. I am thinking about you and if more things come to mind, I will post them.

[Bunty]

Joanne, sending you healing thoughts and prayers..... I can't add much, but for neuropathy and some general body balancing, I really believe in acupuncture.
Marie xx

[Mtngrl]

Joanne,

I'm so sorry to hear this. What a trial!

You've gotten lots of good advice above. I don't disagree with any of it.

My only question is, why aren't you getting Herceptin or one of its offspring?

I pray that you find healing and wholeness. I pray goodness and mercy for you and yours. I pray that love surrounds you and enfolds you, and that pain and worry subside.

[Paula O]

(((Lifting you in prayer right now))))

Paula

[Jean]

Joanne,
I am a huge believer in 2nd & 3rd opinions. Seek out doctors who are working on cutting edge treatments,
who think outside of the box.

While this is not the same as your current situation, I want to share that when I was dx. in 05, back then early stage was told no herceptin, period. Just did not make sense to me. I went for the 2nd opinion, the 3rd opinion,
and yes a fourth!!! I went out to see Dr. Salmon who
told me that I was correct and should have herceptin for my early stage bc had nothing to do with the size of the tumor. Seek out dr. in the field who are doing trials and research in this area. They are working on cutting edge treatments.

Wishing you strength and peace as this is zapping your strength mentally. I am so sorry that you have to search so hard for answers....but in my heart I believe there are some better answers out there.

Fondly,
Jean

[Jackie07]

Joanne,

Perhpas the reason why your doctor wouldn't take the surgery route is partially due to the concern of angiogenesis? The blood vessels could grow and spread in a rage from the surgical wound ...

Especially when they are still not sure about the nature of the cancer in the uterus.

A 2nd (and/or third) opinion is needed. The mother of two sisters in our church had been given six months by our local hospital for her stage IV lung cancer. Her daughters took her to MD Anderson and she was able to do the treatment locally according to the prescription given by the doctor at MD Anderson. She lived six times longer ...

"Never, never, never give up..." - Winston Churchill.

[Soccermom]

Joanne, I'm so very sorry for this news!
I like Becky's suggestion about possible "intra peritoneal/abdominal chemotherapy" I think it has real potential in your case.
Also if you can possibly do it I would get to an NCI designated cancer facility for that critical third opinion. They have Gynecological Oncologists who have more experiences dealing with metastices from distant sites.MDAnderson in Houston was my choice for second opinion. Then treatment carried out at home.
I can understanding how terribly overwhelmed you are and how tiring this all is but muster every ounce of strength you have and seek out Doctors who think beyond the norm and who are highly experienced .
Ill be holding you close to my heart and in my prayers,
Marcia

[KsGal]

Joanne...Im so sorry to read all you are going through, and all the stress you must feel. When I think about this site, your posts always come to mind..how sweet and supportive you are. ((hugs)) Im glad you sent your records out to get another opinion. I think your doctors need to be on the same page about where they are headed with your treatment and the results they expect to get. Im praying that you will get answers soon that will relieve your stress and get you going with the most effective treatment. Big cyber hugs to you..

[NEDenise]

Joanne...
Thinking of you, and wondering if you feel up to giving us an update.

Sending prayers and a hug your way.
Denise