Frequently Asked Questions

We are pleased to share patient experiences.

“ME” DISEASE

Patient’s Spouse:

After her surgery, my wife was told she had stage 3 cancer. We were told that all macroscopic cancer was removed and that chemo will treat the microscopic cells.

 

SOF:

After you both catch your breath and gradually begin to absorb the situation, you will need to discover a balance between staying on top of this disease (and the changes in your lives that accompany it) and not allowing it to consume you. Do not get caught up in the numbers – stage 3, life expectancy. This is a “me” disease. Everyone responds differently.

SECOND OPINION

Patient’s Spouse:

I am so tired, having done so much in the past week. I did take a few hours for myself today, and that was great. Still, because I am so fatigued, I am worried that I might make errors in judgment, fail to pursue promising leads, or be misdirected by false optimism.

 

We have two specialists lined up to comment on the pathology report, and on additional data when it becomes available.   Is this the best strategy? Do I need to be more aggressive? Should I be calling the hospital daily to insure that treatment proceeds as quickly as possible?

 

SOF:

Do not wait too long for the report so that you can get it to the other specialists for a second opinion.   Your timeline and the hospital’s are different. Theirs is bureaucratic, especially in a large institution like the one your wife is in. Yours is urgent.

 

Patient’s Spouse:

The hospital is moving like molasses. Her surgery was May 20, and we still don’t have the pathology report. It was expected last Friday during her first follow-up visit with the oncologist. We have two experts lined up to give advice, but there is no point in meeting with them without a report.

 

My wife called them on Wednesday, and they told her it would be available the next day. Called again Thursday: no report. I suggested that we should call them every day, but she is more passive, saying things like “Let’s give them a little more time”.   Should we “harass” them until we get the report (chemo begins in two weeks), or just accept that the specialists will be able to see it in due time?

 

SOF:

The specialists are also probably busy and you can’t expect an instant response from them. Don’t let time drift by waiting for the report. TIMING IS EVERYTHNG. Your wife is dealing with a lot of emotional trauma. Let her have her space. You handle it with the hospital. Go to the Pathology Department and explain why you need it. Find out why it is being delayed and what they can do to expedite it. Do not get angry. Try to make an ally of the staff.

NAUSEA

Patient’s Spouse:

My wife is now experiencing side effects such as nausea from the pain medications and from trying to get in a proper position after surgery. She’s lost her appetite. Since she can’t eat – really, the idea of any solid food repulses her – she is back on a liquid diet for a bit and won’t be able to come home today.

 

SOF:

Likely this could be helped by the Palliative Care team if there is one in your hospital. If not, you should get a dietician involved.

Anti-nausea medication is a trial and error process.  It will likely cause you more emotional pain than your wife’s physical un-wellness when a medicine doesn’t work. Hang in there – something will do the job.
VISITORS

Patient’s Spouse:

She was feeling positive yesterday, and we decided to have some visitors. Seven or so came to see her, and in hindsight, I’m not sure that was a good idea. She seemed a bit exhausted at the end of the day.

 

SOF:

People think they are doing the right thing, but you need to police this. Talking to visitors is very taxing. They may get annoyed if you try to limit the visitors with a schedule and a time frame regarding how long they stay, but this is all about the patient, not the visitor. If they are good friends they will understand.

 

Patient’s Spouse:

We decided to make today a more subdued one. No visitors, except for having one friend sit with her so that I can get a workout and clean up. (Yesterday, I actually forgot to take a shower, which I didn’t even realize until around 10 pm.)   She isn’t ready to talk to anybody on the phone. She hasn’t spoken to anyone other than yesterday’s visitors, and isn’t even checking her text messages or email.

 

SOF:

It is very normal not to want to talk on the phone (which is also very taxing) or check text messages. Her energy is drained by the surgery, the recovery process, and the emotional strain of coming to grips with the diagnosis and whatever she is thinking about the prognosis. Don’t be in a hurry to be social butterflies.

 Please send your patient experiences to gary@sarcoma-oma.org.

Disclaimer:
The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The purpose of this website is to provide a patient’s experience and perspective.  It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.