Becoming disheartened by Oncologist

Liloefer

I was referred to this Dr by a previous patient/friend of ours who also had breast cancer, but after bilateral mastectomy, she was pronounced clear and her treatment was completed. She raved over this guy, advising us how sought after he was and highly regarded in his field. I wouldn't know, having no experience in this whatsoever but we met with him anyway. I didn't get a great feeling from him but he delivered bad news, why would I be fond?

I underwent a bilateral mastectomy on the 17th and am supposed to start chemo in a month. It seems this doctor is fighting me the whole way. My husband and I have been trying to conceive for three years so this diagnosis was devastatingon many levels. This Dr wants to just move ahead and forget any attempts to retain fertility or egg harvest. He won't budge on timeline by a day, wouldn't give me a good reason why I needed chemo when my surgeon was certain she removed all the cancer so I asked for the oncotype test. Results came back saying the risk level for recurrence is high (35) so he said, chemo is necessary. Okay, fine. So my worst fear is inevitable hair loss and when I advised I was looking into the cold cap therapy, His nurse called and said he doesn't support my using a cold cap, and I should transfer my care someplace else if I wish to use it. Why would he not support this? Anyone hear such a thing?

Mamiya

Lilofer,

You haven't made your diagnosis public so I am not sure exactly what you are dealing with. I can't comment on the fertility part, but I do have to say something here: You say "my worst fear is inevitable hair loss" and I say REALLY? MY worst fear about this is death. I think you need to talk to your doctor about WHY he wants you to get chemo and why he's so sure it needs to be right away. Is it possible that he's trying to save your life? And by all means, get a second opinion, everyone should do that when dealing with these serious issues and decisions. I wish you the best of luck, and I suggest to you that hair is not as important as living (and hair grows back).

Mamiya

There is a huge thread about cold caps you may want to check out: https://community.breastcancer.org/forum/6/topics/...

marijen

What happens to us that we can identify a jerk when he's standing in front of us?

windingshores

I think some doctors are afraid that the cold cap could result in cancer in the areas the cap covers. Chemo doesn't go where it is cold, that is the point of the cap. I have no idea if that is legitimate or not, and think the patient should be able to decide, but some docs may not want the liability, who knows.

Tomboy

I pmmed you. A doctor that won't even discuss harvesting your eggs, or blocking the effects of chemo on your ovaries, just might not be the right doc for you!!!

jc254

Keeping hair is very important to a lot of women. It was to me for a lot of reasons and I make no apologies for it. Notdoneyet was a bit harsh in her judgement. I was able to keep my hair using Penguin Cold Caps and it made the whole treatment ordeal a little bit easier. I am very happy I used them.

It's unfortunately common to get push back from some medical professionals who don't know a lot about cold caps and have outdated beliefs about their safety and effectiveness. There is one type of cold cap that was just recently (this week) approved by the FDA.

It's time to slow things down and get a second opinion so you can make informed decisions about your treatment, fertility issues and cold caps.

Liloefer, please join us on the cold cap thread. You'll find lots of advice, tips and pictures from a great group of supportive women.

mdg

I would get a second opinion. I actually got second opinions on everything.... I also used Penguin Cold Caps to avoid hair loss and they worked for me. I did not have to harvest eggs or anything, but I think you should look into those options if it is important to you. It's your life and your decision. You need to find a doctor you will be OK with because you see them for years.....I am 5 years out and still see my oncologist twice a year! As far as cold caps.....many doctors are simply uneducated about them because they don't care. Many doctors won't allow people to use them but like everything else in this process it is YOUR choice. I would go to another oncologist. If you are interested in using cold caps there are several offices and hospitals that have freezers and do support cold cap use. I think there is a website that shows which locations have freezers but I can't remember what website it is. Someone on the cold cap thread may be able to tell you. Good luck!

Racy

As others have said, get a second or even third opinion. Your relationship with your oncologist may be one of the most important relationships that you ever have, and it's important you can work together.

Just a point regarding chemo: there are many different types so you need to find out from each doctor you consult which regimen s/he is recommending - type and duration.

I totally understand your desire to keep your hair. I read here a few days ago that the FDA has approved cold caps! However, I've also read here that they work better with some chemos than others. That's one reason I say you should know details of your chemo.

Good luck and keep in touch.

LRFTexan

I did freeze my eggs before I started chemo but my team was very specific that there was 1. a chance it wouldn't be allowed depending on my pathology and after getting pathology 2. the reason it was allowed was because I was being treated so aggressive or "they would not pump hormones" into my highly ER/PR + cancer.

I am also cold capping and have retained 98% of my hair. What I have learned it is overall their job to save your life and fertility and caps are secondary in their mind. Most importantly I think is you find someone you can have dialogue with and feel comfortable with so you are making those decisions together

exercise_guru

I think there are studies about A shot I think Lupron and preserving Fertility.

http://theoncologist.alphamedpress.org/content/12/...

http://www.breastcancer.org/tips/fert_preg_adopt/t...

I think you have to trust your MO and make sure that he has treated other young women If not I think it is ok to change MO's. Its ok to ask for another doctor in the group to meet with you and also to get a second opinion.

Mamiya

Sorry, I wasn't trying to be judgmental at all, just saying that hair can't possibly above life. I get the desire to save it, which is why I also shared the cold capping thread. Just take a deep breath and find out what is really best for you, get a second opinion, and if you don't feel comfortable with your doctor get a new one.

Brutersmom

Her is a thought about about cold capping. I had one doc tell me they were trying to bring it to the local hospital for their chemo patients but they were still working on the funds and hope to have it by next year. When I went for my second opinion at the teaching hospital I asked about cold capping. I was borderline for needing chemo. They told me that they do not recommend using it with all types of cancers. He explained that if mine had been more advanced cold capping would not have been recommended. I chose not to go the route of chemo because my cancer was small and the benefits of chemo were small. I think that the doctor should explain to you what his thoughts are and why they make the recommendations. I would also get a second opinion preferably at a teaching hospital.

Liloefer

I meant as a side effect of chemo, not of cancer treatment. I've been assured mine is highly curable even if I doubt that anything is certain. Of course if I had to choose my life or my hair, I'd choose life. Why lose hair if you don't have to and get the same results. I can handle nausea and diarrhea because when it goes away, it's gone just like my hair, but that's the point. Sorry if I offended.

jc254

Lilo, if you give us an idea where you live, I'm sure you'll get some recommendations for a second opinion doc in your area.

Hopeful82014

Lilo, I don't think you offended at all and I think most of us understood the context. Please don't feel badly about anything you wrote.

I will echo the recommendation that your get at least one, preferably 2 more opinions (which insurance will generally cover). I was referred originally to an MO that was kind of o.k. but also very unsympathetic and dismissive of my concerns. There were a couple of issues, too, with lack of follow up on her part. She, too, was pretty dismissive of cold caps.

My BS gave me the name of another MO (who's more familiar with my type of mutation) and she is as different as night and day. I no longer dread those visits or leave feeling utterly defeated.

You NEED someone you feel good with, someone who respects YOUR concerns and will work WITH you to address those concerns and keep you healthy. Please don't give in to any kind of peer pressure to stay with your original MO. It's YOUR life, your fertility, your hair, your choice. Good luck.

Meow13

If I ever find myself requiring chemo I will definitely cold cap the statistic show the chance of scalp Mets in so low. Who wants to lose their hair? Also it is your life not your oncologists he or she is an expert advisor you make the decisions. Having your fertility or eggs preserved might be a huge deal for a young woman.