So Hard Not to Have A Broken Heart

We are all with you. I’m sorry you’re having to go through this and I’m sorry the doctors are not moving quicker. You need some answers to calm your mind And they’re not being sensitive to that. Have you sought a second opinion?  Yes, it’s a hassle but you need someone who will aggressively work with you to explore all options. Don’t give up hope. There are a lot of tricks in the bag and the should be dealing with your pain. 

I had a very small mass show up in a CT scan in 2014.  My GYN/onc. checked it with scans for a whole year, but it didn't grow.  My CA-125's were running in the 7's, then the 6's, and then in June, 2016, they got up to the 9's.  I was told not to worry.  In Feb., 2017, the number was up to 14.  Again, I was worried but my oncologist told me not to worry.  In a short two month period, it suddenly went up to 129, an 874% increase.  In a roundabout way, I was found to have cancer wrapped around my ascending colon, in my peritoneum, and in my paracolic gutter.  I had to have surgery quickly before it caused a bowel obstruction.  My original cancer was in 2010, and was stage IVb UPSC with cancer in the uterus, both ovaries, the omentum, and a nodule on the small intestine.  I also had my gallbladder and appendix out at that time because gallstones were found in my CT scan.  I had an incisional hernia repair in 2012, and in my most recent surgery, my intestines were found to have grown into the mesh from that repair, so I ended up with an abdominal wall "replacement" with more mesh and two resections of my bowels, one for the cancer, and one for the intestinal "mess" as my GYN/onc. called it.

I thought my cancer spread pretty quickly, but it sounds like yours got even further than mine did in a short amount of time.  I had surgery and chemo with Carboplain and Taxol in 2010, then surgery and chemo with Carboplatin and Gemzar last year, which had to be switched to Cisplatin and Gemzar when I developed a Carboplatin allergy in my next to last treatment.  I'm now taking Metformin and Turmeric, hoping to stem the next recurrence, which my GYN/onc thinks may happen in another 5 years or so.  You might want to see if you can get on Metformin, as one person on here (Takingcontrol58) had great luck with it when she was given just a few months to live.  She told me it works on 4 of my 6 mutations that were found when I had genomic testing by Foundation One.  It doesn't work on everyone, though.  I'm taking it even though I'm not a diabetic. 

You definitely have a hard journey ahead of you, as I well know.  I can well understand your panic. Thankfully, I didn't have much time before I got put in for surgery.  I hope you can find a good place for your (almost) feral cat.  Sometimes, the wild ones can make the best pets.  I've been there and done that myself.  Don't give up on yourself yet, though.  Miracles do happen, and I'm one of them.  I've survived the beast twice, and it may be something I have to keep fighting as long as I can.  I told my husband the last time that I don't feel I can go through another extensive surgery if it comes back again, so  but if it comes down to that or being in a lot of pain for the rest of my life, I guess I don't really have any other options.  I hope the Metformin and Turmeric work so I don't have to go through it again.

I wish you a lot of luck and hope you can get surgery as quickly as possible.  I will be praying for you and I expect many of the other women on this site will be, too.       

I'm so sorry to read these results and can only imagine how devastated you must feel. It's worse because you're not getting the speedy response that you deserve to have from your medical team. It seems me to that you may need to move beyond phone calls to get things moving.

For example, when I was asked to get a certain procedure done prior to my surgery and there was little time to make the arrangements, I went to that doctor's office in person to request the procedure. I pleaded my case nicely to the office staff. There was a lot of back and forth between that doctor's staff and my gynecological-oncologist's office, but I just kept standing there and expressing my gratitude for their willingness to help. They had to do some schedule shifting, but they did squeeze me in for the procedure before my surgery.

And when I was about to start phase 2 of my chemo, I needed to get an echocardiogram. But when I called to schedule it, I was told that the first available date would be after I was supposed start the chemo. I didn't want to delay chemo, so I went to the center where I would have the echo and spoke with the scheduling people in person. They couldn't bump me up, but did send me off to see someone who had more pull and that person was able to move up my echo so that I could have chemo as scheduled.

It's easy for people to say no or put you off on the phone, but a lot harder for them to do this when you're standing there in person, asking for their help in a nice way. So if you're able to go in person to the doctor's office or treatment center that is responsible for scheduling the biopsy and PetScan, you may have better luck in getting them to move forward on these important tests.

As for your cat, it may be hard for you to find the perfect person to take on a cat that is still somewhat feral, even though the kitty responds to you. I've volunteered with a rescue group for many years and recommend that you reach out to your veterinarian, if you been able to catch the kitty and take him/her in for an exam, shots, etc. (I know that can be hard to do with a feral cat!).

Many vets work with rescue groups, and provide their services at a discount, especially to smaller groups. When a vet calls a rescue group to see if they can take in a cat from an existing client, the group is more inclined to say yes to the vet than they might if you called them directly. While some rescue groups have physical shelters, others like mine rely on a network of foster homes in which the dog or cat can live with a family while awaiting adoption.

Sometimes the foster dogs or cats stay in the foster homes for months or even a couple of years until either the foster home has become so attached to the animal they end up keeping them (the "foster fails") or the right person comes along to adopt the animal. Many years ago I fostered a feral kitten who never did adjust to other people, although she was very sweet to me. She was my "foster fail" although I've had others, including my most recent foster, that have overcome their shyness and have been placed in good homes.

But it may be premature to take any action about your cat until you've had the tests and learned what the doctors recommend as next steps. Pets are a great comfort when we are sick or distressed and I would hate for you to lose that comfort right now.

So frustrating! A few of us have commented that it seems that once you are older, some medical personnel seem to take their sweet time in finding out what's wrong with us. I'd like to think that is not the case, but it sure seems it. It often seems that you have to go somewhere else to get the wheels turning.

Right now, your gyno onco seems to be taking a good approach, at least ... second more-precise tests to confirm the problem areas. CT and MRI scans sometimes produce false positives (PET scans as well, but from a layperson's POV here, they seem more accurate), and while this may not be your case, a second set of eyes is important to sift through the problem areas and see what does not need to be addressed (some scan techs ... not most, but some ... do seem to have a case of cognitive bias and do not consider a patient's past clinical history, which is why an independent second set of eyes and another test is so important), what may be due to other factors (the gallstones and perhaps one or two other areas ... I am not a doctor, so PLEASE don't go by me ... may be a symptom of another problem that is very important and needs immediate action, but it may not be cancer), what needs watchful waiting (often, lymph nodes swell for other reasons), and what is indeed cancer-related, of great concern, and needs action right away ... as in yesterday. 

As I'm understanding it, you had two different scans here. The first was a PET scan. This is an MRI. Is the same person interpreting these scans? 

Unless you have the fortitude of a statue, I doubt ANYONE would be calm in these circumstances. If you at least had a set date for the second tests, you'd probably feel a whole lot better; like you're on the way to sorting out what is what. Hope you get some dates soon (and it really stinks that we have to be nagging doctors to get a move on!), and get some answers, even it it means getting a second opinion. When are some of these medical personnel going to understand that you are fighting for your life here? To them, it's another appointment. To you, it's life itself.  I think it's telling that some doctors get a whole new perspective when THEY wind up being the patient. (Here is an article about that: https://www.mdanderson.org/publications/cancerwise/2016/10/doctor-becomes-cancer-patient.html)

So sorry that you are scared and in pain. I really hope that your medical team will move quicker and they will be able to get some answers and a practical plan about how to move forward. I really like cmb's idea of showing up and kindly requesting the team's time. It might work. Reading the responses from ladies who have survived mets made me hopeful. I hope it has done the same to you. Keeping you in my thoughts. Sending many hugs!

Dear Amatullah,

I'm so sorry to hear about the results of the scans. I'm also sorry that you have to deal with the doctors and the time being wasted in scheduling and waiting. This has been the hardest part for my family as well and really has made me jaded and unsatisfied with our current ineffectual health system.

I second the suggestion that you try to get a second opinion while you are waiting to get those biopsies and PET scans. Considering that the chemo and radiation hasn't really been effective in treating your cancer, I would also suggest looking into sending any of your tumor or biopsy samples for genomic testing to see if you happen to have those mutations in which metformin or alternative immunotherapy treatments may work.

I will be praying for you and your family during this ordeal. I can only encourage you to continue putting your faith in God and pray with all you heart when you are feeling panicked.

Love,
Rebecca

That is what annoys me about scans, derMaus. They pick up stuff ... sure. And generally, it's very important and accurate. But occasionally, some of the stuff they pick up can be due to previous injuries, unusual physical conditions (or even typical ones) or medical treatments and winds up stressing the heck out of a patient for no reason. I had two friends who lost months of their lives and worried unecessarily because their CT scans were all gloom and doom, only to find out they were picking up C-section scars. I am glad you can impart some RL insight, derMaus, and I hope it might provide some comfort until Amatullah finally gets her answers and her onco can finally get down to the business of focusing on what needs to be addressed and in what order (the kidney situation and gallstones are still concerning, whether they are related to cancer or not).

As I see it, a CT, PET, U/S or MRI tech's job is to point out areas that need an onco's or other doctor's attention. From there, the onco/other doctor figures out how to deal with the findings. The second tests should provide clearer info. The delay, though, is really unecessary and annoying

I am so sorry that you have to go through this.  Please do not give up hope.  You do not have an expiration date stamped on the bottom of your foot

sendingingugs and paraders, Lou Ann

takingcontrol58 said:

Believe in miracles

Amatullah,

I am so sorry you are having to experience the news that your cancer has metastasized.  But I trully believe
life is all about how you approach it- I consider cancer the best thing that ever happened to me. I believe
cancer saved my life.  Sadly, human nature is that we don't change until we are forced to.  A metastatic cancer
diagnosis forced me to change my lifestyle. I had no idea of all the damage I had done internally to my body.

Three years ago, on Jan 16, 2015, I received the results of a CT scan that looked very
similar to your MRI- my cancer had metastasized to my liver (multiple lesions), spleen (multiple lesions),
vaginal cuff/outer rectum (new 5.1cm tumor) and I had nodules in my lungs, spleen, outer colon and kidneys.
What was so shocking for me was that this was two months after a supposedly successfuly hysterectomy.
I had not yet started chemotherapy. After a biopsy was done on one of my liver lesions, the radiologist told
my husband I probably had 4-6 months to live, the cancer was growing so fast. So I guess he thought I would
be filled with cancer in 6 months.

This was when I woke up to the reality of my situation. Apparently, I needed something to shock me to finally
stop doing what I was doing. I was going to have to get involved and do my own research if I hoped to survive. 

I think the first decision you have to make is "am I going to live or die?".  I choseto live and never looked back.
I just didn't believe it was my time.  I was too young.  I had never been sick in my life and had to wake up to
the fact that now my body was sick- and I had to heal all that was going on inside that was allowing my body to
grow cancer.  So many people think they are healthy when they get cancer, but if you develop cancer, you are
not healthy inside.  So you need to get to work to determine what toxins/poisons in your body are creating such
a hostile environment in your body that allows cancer to keep growing.  Since you have already had your initial
cancer treatment, it is clear that something is going on in your body that still allowed new cancer to grow.
You yourself are going to have to determine what that is. Having cancer is like the scene of a crime.  And the first
thing you have to do is gather all the facts of your case then start interviewing the suspects.

Just to ease your mind, remember- cancer is your own cells, not the enemy.  There is damage going on inside your
body that has caused your cells to mutate and form tumors.  So you need to heal your body from the inside out.
Our bodies are a miraculous work of God- if a woman's body can create a perfectly formed human baby and then
stop growing that baby, I believe our body knows how to stop growing cancer.  But we have to work with the body
and not against it by adding more poison to our systems. Many of the growth factors that grow a baby also grow cancer.

I would be happy to work with you through e-mail to give you some suggestions on a "plan" to follow that you
can discuss with your doctors.  I believe the first step you need to take is to get a complete set of blood tests
to determine the current state of your body.  I would be happy to give you a list of blood tests that I have been getting
for the past 3 years. The current cancer industry will not address what is causing your cancer- but that is what you have
to do.  They will treat the cancer that is there.  But as you can see, treating your initial cancer did not stop new cancer
from forming.  I would also highly recommend you get genomic testing through Foundation One. Based on the fact that
I also had mtastases to the liver and spleen, I have some ideas of what could be going on. And I believe metformin
addressed some of those issues.

It is so important to lose your fear of cancer so you can deal with it in a more rational way.  I understand that everyone
believes cancer is out to kill us but I don't believe that is the case.  I believe it is there to warn us that we have a serious
problem going on inside that needs to be addressed. 

Sometimes I think that having all that cancer is exactly what saved my life, as I probably wouldn't have changed
my lifestyle without knowing that I could die if I didn't make some drastic changes.  The first thing I did was put
my life in God's hands. God is in charge and miracles do happen.  I believe a miracle happened to me since 88%
of my tumors vanished two months later and I was totally NED five months later, and still remain NED. And I had
lots of metastatic tumors.

Never give up. You are just about to begin your real journey. 

Takingcontrol58

 

Takingcontrol58, I love the way you presented this. It makes so much sense. I get so busy in my day being a mother and wife, I forget I have a body that needs good nutrition and care. This is my new years resolution – to care better for myself.

Thank you, for your insight, support, and encouragement to Amatullah.  I have not experienced any of this, to date. But find it helpful to have these posts for future.

Amatuallah, please do not give up yet. There are many wonderful, positive, and encouraging posts here. I do agree with becoming the squeaky wheel and showing up in person to get attention and appointments. It's so important to be your own advocate. I was passive initially and didn't advocate for myself, which could have made my situation much worse. We’re here for you. Keep us posted.