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New to the board and need some input

scared99
Posts: 74
Joined: Jun 2012

Hey Guys I am new to the board am in a fog right now trying to grasp everything that has happened in the last month. My mom who just turned 60 was doing yard work in late april and thought she threw her back out. She suffered with sciatic pain and what started to alarm her was a feeling in her bowel and bladder of numbness. She went to an spine doctor who ordered an MRI of the lower spine

The MRI of her low spine/showed a tumor on the sacrum.

He then ordered a CT guided needle biopsy.

Just this Friday my mom and dad got a call from the head of oncology-hematology at the medical center. He explained that the biopsy found cancer cells in the tumor on the sacrum. He informed my mom and dad that the spinal doctor noted possible suspicious spots on the liver. The head of oncology was not to happy with the previous doctors report and seemed somewhat agitated saying he has no idea where this doctor even got a view of the liver based on the location of the MRI and did not agree with the previous doctors assessment

He ordered my mom for more blood work and an MRI of her abdominal area a bone scan and I believe another Cat Scan.

My mom has had back problems her entire life and leading up to this episode in April had pain come and go.

In researching tumors of the sacrum it appears they often spread from the Colon or Breast in stage 4 cancer.

My question is this ? Her blood work for the past 2 months has been normal. She has not lost any weight and the only problem she has had with her bowel has been irritable bowel syndrome which was brought on about 7 years ago.

Is it possible this is a primary tumor of the sacrum ?

janderson1964
Posts: 2215
Joined: Oct 2011

It is possible that it could be a primary tumor in the sacrum but not likely. Her doctor is doing the right thing by ordering more scans but i would get her to a gastrointerologist for a colonoscopy as well.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

First, I see you are brand new to the board here, so let me be the first to Welcome you to the board. Please make yourself at home and know that any questions you have are important one... there are none that are considered silly or elementary. If you have a question, then you can be rest assured there will be a dozen or more who have the same question but were afraid to ask :)

Second... you will find oodles of help on these boards, both from a patient perspective and from a caregiver/concerned relative/friend perspective. But for the most part, none of us are doctors or specialists... so we can only give advice based on our personal experiences.

So, after reading over your post, which was very informative... it left a few questions for me, questions which would prevent me from giving you any concrete advice. You say that her "spine doctor" ordered the first MRI of the lower spine. I'm not sure what a spine doctor is but am I close in thinking it's a specialist who deals with back issues? So when he ordered the MRI, it was not to look for cancer, but more to get an overall picture of what was causing pain in her lower spine? When the MRI found/showed there was a tumor on the sacrum, I take it he was still focusing on a problem to do with the spine/back, hence the needle biopsy was to determine if this was a benign or malignant tumor.

Now there's a conflict where the head of oncology-hematology doesn't agree with the spine doctor because he doesn't understand from the MRI how the doctor could have gotten any kind of view of the liver to make the assessment he made of the possible liver spots. So, in other words, no one really knows what is going on at the moment other than it sounds like the needle biopsy on the sacrum tumour has tested positive for cancer.

If that is so, could they not tell from that one biopsy what kind of cancer you might be dealing with? If the cells are colon cancer, then fine... you know it's not the primary tumour and that has still got to be found and dealt with. But maybe the tumour is too small to determine the kind of cancer cells.

No matter what... you, your mom and your dad have to try and slow down the thoughts going through your heads at a million miles an hour. Getting a diagnosis, even if it is only a partial diagnosis at this point, is one of the most shocking, terrifying things you have to experience. We can all, from experience, tell you it will calm down, and you will actually get to a point of taking things one hurdle at a time and ignoring the rest. It probably doesn't seem that is possible at this point, but it will all calm down. What I suggest you do is create a family "team". Who is going to go to the appts. with mom? There are going to be so many appts, your head is going to spin... so I would suggest you go out and buy one of those big three ring scribblers (like you get when starting high school for the first time). This scribbler is to come to every appt. with Mom and her team/family member. When you aren't at appts., you will be constantly thinking about questions... questions about the cancer, the treatments, the side affects, the options, etc, etc, etc. Write those questions in the scribbler when you think of them... because trust me, when you go to an appt. you will totally forget what it was you were going to ask the doctors/oncologist/specialist. When you do ask them, then write the answer down. You will be absolutely amazed at what your Mom will hear vs what YOU will hear. So all the better to write it down as to what was said at the time, rather than trying to remember it. You will be so grateful for this book! It is also a great book to keep copies of reports, scans, medications, etc. so everything is at your fingertips :)

Ok... enough babbling for one post. It's good that they are covering all bases and scanning all areas. You did ask why the blood work she had earlier never showed any problems. Most likely, the doctors were looking for certain things that would have been a problem then... for instance, checking blood cell counts to make sure there was no infection showing up. Sure enough, no infection or indication of infection showed up... all was "normal"... but that is not testing for cancer type blood work. My routine bloodwork all showed perfectly fine prior to my diagnosis... but then, it was only routine bloodwork, not focusing on anything in particular.

Hang in there! It will all make sense soon! Meanwhile, you have a whole new world of friends here :)

Cheryl (in Vancouver)

scared99
Posts: 74
Joined: Jun 2012

Thanks for the replies, I had a chance to sit down with my
mom and dad today and talked with them. From what they told me the oncologist said the tumor originated on the sacrum. For the last 2 days everytime I asked questions I was told to stop it because it was upsetting my
mom. It has been like pulling teeth to get any information. I figured the doctor would have told them the type of cancer, such as chordoma, giant cell, multiple myeloma but he has not. I'm assuming that will be done tommorow when he meets with them after the additional scans and tests have come back. I am growing frustrated since everytime she goes in for an appointment to get answers we get another appointment.

The original MRI was done to check for a blown disc in her back. When the doctor discovered the mass on her sacrum he them ordered a ct guided biopsy.

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Welcome to the Board...this is a great place to find assistance and helpful direction. I too have been on a whirlwind journey the last month since being diagnosed with Stage IV Colorectal in the liver. Although it is hard to slow down the racing thoughts I had to do that to keep perspective and be able to listen to the doctors without a din of background noise from my own head. Once again welcome; this board has been a great help to me. Hugs of comfort and patience.

scared99
Posts: 74
Joined: Jun 2012

OK I have an update. My mom was diagnosed with stage IV sigmoid colon cancer with mets to the sacrum and one " suspicious" spot on her Lung and Liver. The head of oncology is somewhat perplexed as it appears the first spot of Mets was her sacrum which is unheard of. He has started her on radiation and has scheduled her for a colonoscopy asap. The doctor has her scheduled to begin Chemo next week and at the moment said he is not concerned about the two spots on the liver and lung, he will watch them closely as she goes through Chemo.

He did not give her a prognosis... he told her he has seen people in far worse shape make him look like a fool. Right now he told her to take it one day at a time. His main concern is the sacrum and shrinking that tumor.

Right now my mom is doing alot better than me and my dad.

I have been looking online for the last week for Stage 4 survivors and have found some amazing stories. Herman Cain is a stage 4 survivor and I found one individual that was diagnosed stage 4 in 1986 and is still going strong.

I am having moments of faith then moments of utter sickness.

steved
Posts: 835
Joined: Apr 2004

You are right that presentation is unusual though there was another recent poster who described sacral mets- I directed her to a blog I know of of a guy with sacral mets (it is mixed reading so don't expect a holloywood story of recovery but his attitude is great) at
www.rob-pollock.blogspot.com.

There is alot that can be done through chemo, radtiatin and hopefully surgery which is ultimately going to be the most likely thing to be able to offer a full cure. There are a lot of other complementary approaches that are available if your mother is interested and a lot of very knowledgable people about that here.

You are right that stage 4 is a huge range and includes a lot of success stories of long lives, high quality and cures (stage 4 has a low cure rate but it can be a reality for some). At this stage though just take time to learn and get your own head around things so you can best support your mum. Tehreis a long and hard journey ahead for bothof you, but a lot of support here if you want to use it.

steve

scared99
Posts: 74
Joined: Jun 2012

Steved I believe the doctors intent is to shrink the sacral tumor as much as possible before attempting surgery. As I understand the surgery would be a major surgery to undertake. She starts chemo next week as well. I am having a very hard time grasping this all. As of 2 weeks ago the only indication my mom was sick was the severe back pain. She was eating well, enjoying her life, making all her doctors appts.

She is in rather good spirits since starting the radiation on her sacrum her pain has diminished alot and she is up and moving like nothing was wrong with her. My brother girlfriend has been looking through medical journals all weekend and it appears the only statistic I could find were from a Canadian medical journal. Which found from 1980-1997 patients that presented with a solitary bone met with colonic orgin, which was only 3 out of 5000 patients had a 33 percent 5 year survival and patients with mets to the bone, and othe organs involved has a 18 percent survival after 5 years... I think 200 some ouf of 5000 met that criteria.

steved
Posts: 835
Joined: Apr 2004

If you have some one in the family who is up to gaining knowledge throgh trawling surgical journals (heavy and dry reading believe me) some of teh following links may be of interest:

http://www.springerlink.com/content/bn19376p29j6838r/
http://www.springerlink.com/content/0e0ttj7c7ypxneuf/

Had a look at the article you refer to- it is a good, large series of patients but a lot of tehir data is old (patients from 30 years back) and a lot of treatmetn has advanced hugely in that time. I would expect the rates of survival to also have improved. Ultimately, itis a rare presentation and so you won't find great data. The key is getting good surgical and oncological opinions, gaining good knowledge. talking openly with your mum and supporting her to make the decisions she feels are right for her (not necessarily for anyone else).

Great to hear she is up and going though. What ever happens enjoy your time with her, focus on quality and keep the hope alive.

steve

scared99
Posts: 74
Joined: Jun 2012

I have an update and a few questions I am hoping someone could chime in. My mom is finishing her radiation treatment today. Prior to going into radiation the only problem she had was slight sciatic pain from the sacral tumor. In the last few days she has been having problems with her bowels. The provided her with a diet of what foods to eat while on her radiation treatment but she has been attempting to eat whatever she wants which has lead to bad diahreah. Is the bowel problems a symptom of the cancer progressing or a common side effect to radiation ? She has also been suffering from fatigue and it seems when she takes the pain meds prescibed she goes into a fog. The doctors do not seem to be worried and my dad who has been with her at every medical checkup since her diagnosis is not worried other than he is concerned about the ammount of pain meds she is taking.

So my main question is the bowel problems and fatigue a common side effect of the radiation ?

danker's picture
danker
Posts: 1179
Joined: Apr 2012

When I had a chemo pump giving me 1 1/3 cc of 5fu per hour 24/7, I was also getting radiation Monday through Friday. The fist four weeks were OK, but he following 2 weeks Gave me galloping diarrhea. Then a rest before the resection of my colon tumor. Needed iliostomy. When reversed developed a fistula, which healed itself from the inside out. Now 2 years later am NED ( no evidence of disease)
and living a normal life. Don't be afraid. Current procedures can be all we need. Just have faith and take it a day at a time. Good luck!!!

scared99
Posts: 74
Joined: Jun 2012

Thank you Danker, I appreciate the input. I am somewhat out of the loop when it comes to what the side effects will be from these treatments. I have learned to take this one day at a time. I used to look very far into the future but every day seems like a new day with my mom. One day she is fine and the next she is struggling. She is excited to have alittle break between the radiation and the chemo. I am so glad to hear you are NED for 2 years. I hear so many inspirational stories on this site it makes me smile :-)

steved
Posts: 835
Joined: Apr 2004

Radiotherapy is one of the oddest treatments to experience- it feels like nothing is happening (bit like and xray) and at first nothing does. But in time side effects do develop and tiredness is the most common. The radiation kills fast growing cells (like cancer cells) and that can include those that line the bowel so diarrhoea is very common. They target the radiation at the tumour but it has to pass through other parts of the body to get there so it does affect other local organs. Side effects often peak a week or two after treatment but do settle in time.

The pain meds are difficult to balance- it is vital her pain is controlled but it sounds like they are probably using opiates (morphine like drugs) which do cause sedation and a fog like feeling. It may be a matter of getting the doses right or they may caonsider other routes of giving it (sometime opiate patches keep the levels more steady in the body and so cause less sedation) or different drugs (if the pain is due to nerves being affected drugs like gabapentin are sometimes better than opiates and are less sedating). PErhaps a specialist review by a pain team (often led by anaesthetists) may help?

Hope things settle down for her,

steve

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

I agree with Steve. This treatment appears benign but can over time create some side effects. And the side effects can stick around after treatment as well. I needed to learn to ask for help and meds as needed. I had diarrhea which was controlled with large doses of immodium. I also got some topical cream from the nurses and found Tucks wipes to be a lifesaver (or should I say bum-saver). Best wishes to you - you'll get through this.

scared99
Posts: 74
Joined: Jun 2012

Thank you everyone. I am over my mom and dads today and she seems alot better than she did the last time I was here. They lowered the dosage of some of her pain meds. I have one more question. I was reading her information packet on the chemotherapy. There was a statement from her doctor that the patient has been advised of the risks of Chemotherapy and benefits and informed that due to the metastasis of her cancer curing the cancer with chemotherapy is unlikely but rather palliative.

I got pretty bummed out when I read this. Is this standard with stage 4 cancer. It seems like her team of doctors have been rather up beat when treating her. They told my mom and dad their goal is to treat this like diabetes or another chronic condition.

It seems like the goal of stage 4 is to treat the cancer rather than trying to cure it... try to get it into remission or stable and continue to monitor for any recurrences ? Am I correct on this ?

danker's picture
danker
Posts: 1179
Joined: Apr 2012

try radiagel, available at wallmart,for bun burn. It also has EQUATE flushable wipes. Together they saved my bottom. LOL

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