How many medical opinions would you seek for a potential cancer diagnosis?

[Anonymous]

I was told yesterday that I have a tumor, fairly large, that is most likely cancerous and was referred to a specialist at GWH.

I'm really overwhelmed at this point and can't think straight. It really came out of nowhere, I'm way too young for this kind of thing.
And I have no idea what to expect. So far I was told that it is treatable,but at this point I don't even have a definitive diagnosis.

How many opinions should I obtain before deciding on the treatment? Looks like the tumor is growing slowly, so it's not like I have
to go in for surgery/chemo tomorrow, but I also don't want to drag the process indefinitely.

Can anyone please share their thoughts?

I'm really scared.

Thanks!

[Anonymous]

I would get at least one, maybe two opinions from a specialist at a comprehensive, university based cancer center. If I was in your shoes I wouldseek an opinion from Johns Hopkins....they are the best in the country and we are lucky to be so close to them.

[Anonymous]

Anonymous wrote:I would get at least one, maybe two opinions from a specialist at a comprehensive, university based cancer center. If I was in your shoes I wouldseek an opinion from Johns Hopkins....they are the best in the country and we are lucky to be so close to them.

I sorry I posted before I told you that I'm sorry about your situation and hope that you heal well......god speed.

[Anonymous]

Research Miracle Mineral Supplement and do the protocol to see if it shrinks. Then go to Johns Hopkins.

[Anonymous]

Get an appt at Hopkins ASAP. It will only take you a little over an hour to get there and they are amazing. I go there for another serious medical condition that is not cancer but am glad that I do after being ignored by a so called Top Doctor in DC.

I am sorry you are going through this, but you deserve the best and the best is only an hour away at Hopkins.

[Anonymous]

Anonymous wrote:I would get at least one, maybe two opinions from a specialist at a comprehensive, university based cancer center. If I was in your shoes I wouldseek an opinion from Johns Hopkins....they are the best in the country and we are lucky to be so close to them.

It depends on the cancer -there may be a better place in OP's particular circumstances than JHU.

Cancer centers around the country include: Dana Farber, Sloan-Kettering, and MD Anderson to name a few.

OP, would you mind telling us more details about the cancer? Perhaps some posters will have firsthand recommendations that have not been mentioned.

[Anonymous]

I have cancer and was completely under impressed by hopkins. You need to the cancer center that specializes in your are of cancer.

[Anonymous]

(((HUGS))))). I am so sorry you are going through this.

I agree that Hopkins can vary. It would help you posted more specifics as someone may know a good specialist in the area or within a few hour drive.

I would definitely get at least one other opinion. My guess is opinions may not vary about the dx, but they may vary about treatment needed.

I would also research diet and nutrition intervention to try as a supplement to conventional medicine not as an alternative. I am not saying diet caused this at all, what I am saying is that people find supplements and diet changes can help with the tranditional treatments and depending on the cancer there is research to suggest these things as well as support groups can make a huge differencfe with recovery and prevention of relapse.

Speaking of support groups, please look into ones at your local hospitals. You meed to be around other people who have been there/done that for support and for ideas and recommendations of best doctors, etc.

[Anonymous]

I had an ovarian cancer scare and my GYN brought in a gynecological cancer specialist for a consult. I felt comfortable with that, and his recommended course of action. I did not seek out a second opinion. But I may have if the course of treatment was odd. For me, it was removal of the tumor, which was tested for malignancy. It wasn't malignant, but the docs still prescribed specific follow-up care and monitoring.

If it had been malignant, then the options would have changed. Is surgery enough? Chemo? Or radiation? And yes, I'd get a second opinion. Things are changing a bit in the cancer-treatment world, and many chemo regimens are being questioned about whether they are the best thing to do or not.

In addition, there is an anti-cancer diet out there, that's not too weird, so even if it doesn't help, it's not going to hurt. It cuts most sugar, requires lean proteins, lots of fruits and veggies, and whole grains. There is a naturapath that recommends this diet and monitors blood work and urine tests, etc. His name is Paul Faust, in Towson.

http://www.chesapeakenaturalhealth.com/

I've had several people in my family who have battled cancer and who have used this guy. They keep their regular doctors apprised of everything, and it seems to work very well as complementary medicine.

I'm sure there are others who are in the DC area, but he's the one I know.

Best wishes OP. I know it's scary. What helped for me (and my family members) was learning all we could and planning a course of action.

[Anonymous]

OP, so sorry. Stay strong. I was diagnosed with a rare brain tumor about 7 years ago. I went to about 10 or 12 doctors before I found the one who felt right for my situation. Do not settle. Ask questions. Demand to be seen. Take notes and bring an advocate with you to all appts if you can. You need someone in a better state of mind to also hear what the doctors are saying.

Good luck!

[Anonymous]

This is a LONG post for the OP, from someone who has been in your shoes:

My thoughts and prayers are with you. I know it is absolute hell right now, and the most horrible shock, which I could never have imagined before I went through the same thing with a blood cancer some time ago now.

For me the diagnosis was the absolute worst part mentally- and it actually was much better once I had more information and was on treatment. You will have LOTS of appointments now related to diagnosis and staging. In my experience, once I had the information and started a treatment plan, it was much much better, mentally.

Please know that you are not alone. People get through it routinely.

It really depends on the type of cancer, and the specific circumstances, where you would go for a 2nd opinion, and a 2nd opinion on WHAT precisely. Getting the pathology right is critical- once you have a biopsy done, the slides are sent to a lab to diagnose the specific type (and subtype) of cancer. Some are easier to diagnose than others. If there is any doubt, they will send the slides to a more specialized lab to be analyzed by more specialized pathologists, and get confirmation of the type.

On deciding on a treatment plan, it depends. Where you would go for a second opinion on a treatment plan depends on where the specialists are- and if you need a faraway specialist because your cancer is so rare or there is a specific area of disagreement on your case by the experts. For many cancers, the NCCN guidelines represent the most recent research and treatment plans, based upon the latest scientific evidence. These guidelines are developed by committees of the top, top researchers and clinicians who specialize in your particular type of cancer. Some of the guidelines are in the form of flow charts- eg, if someone has Stage II, and this treatment has this result, give radiation; if this treatment has another result, proceed to another drug, etc. This is based on the latest available scientific evidence. Once your cancer is staged, your doctors will decide upon a specific treatment plan for you. In my case, certain factors were "borderline" between different stages or factors, and there was debate on which treatment plan to go with- each offering potential risks and benefits, a real balancing act. Many major institutions have "Tumor Boards" where a number of experts will discuss your case and the merits of specific treatment plans, and debate before offering a recommendation. I ended up getting 'several' recommendations from top specialists in the field, including a "Tumor Board" at a major institution. (But I got my infusions at my HMO- these infusions would be equally effective or ineffective if I got the same drug while sitting in MD Anderson's chemo suite, or MSKCC's suite- it all depends on the specific biologic makeup of the cancer cells.)

For me, it was helpful to learn everything I could about my type of cancer. An organization like Leukemia & Lymphoma Society will have basic literature, though I eventually bought the medical textbook on my cancer. I also found a great online forum for the one I had.

My heart goes out to you- I wish I could give you a hug. I didn't know which type of cancer I had for several days and those were the worst days of my life, literally torture and hell. I think I would have rather undergone any other kind of physical torture. And it was awful in the early, uncertain days of treatment. And absolute hell to feel the disappointment of a close family member pulling away from me and really rejecting me because they couldn't handle the fact that I had cancer and might die soon- anyone who has gone through cancer will tell you, you find out who is there for you and who isn't. Fortunately, I now having stronger bonds with those who WERE there for me.

I also recommend that if you are of childbearing age and want more kids, that you check out fertilehope.org. There is life after cancer so please check into these options- I was glad that I did.

I am wishing you all the best and please know that you are in my thoughts and prayers. During the awful diagnosis place that you are in right now, I found it helpful to keep life as normal as possible- I stayed very busy to keep my mind off things.

[Anonymous]

OP, I'm sorry you're going through this. As someone else said, the part b/w "you likely have cancer" and getting treatment started is one of the most stressful parts of the whole ordeal. Once you have a definitive diagnosis and treatment team and plan in place, you will start to feel a little better as you gain a semblance of control.

I agree completely with the PP right above me. I am a very, very firm believer in getting 2-3 opinions unless you have a cancer that is so straightforward that virtually everyone treats it exactly the same. Assuming that's not the case here, getting multiple opinions and looking at multiple treatment facilities can be extremely helpful. Where you seek those opinions will depend on the facts of your particular cancer. While JHU may be one place to consider, there may be other places around the country that specialize in your type of cancer and they should be consulted instead of or in addition to local resources such as JHU.

Whatever you do, please don't feel like you're out of line if you seek multiple opinions. Good doctors will be glad to help you identify appropriate individuals to talk to, share information with them and generally help you find the information you need to make decisions you feel comfortable with. I can't tell you how many times I've heard someone say they didn't want to get another opinion because they might hurt their doctor's feelings.

Hang in there. One step at a time. It will get easier.