Second opinion and poetry

[SueLR]

Hi Ladies,

I am in my first remission folllowing chemo and op, and asked my Oncologist about maintenance therapies to prolong remission. He said there wasn't anything useful but I was frustrated because I wanted to understand why. I'm a bit of a pain because I need evidence.

Ovacome gave me the name of an Oncologist in Leeds who agreed to see me for a second opinion, and what a fabulous doctor! It was so worth it.

He explained to me, as my doctor had, that there isn't anything that would prolong remission for me, but really explained why. The most interesting thing was Avastin, but because of the way it works, it hasn't been shown to help women who have responded well to chemo and have no active disease of more than 1cm. (Although he went into a lot more detail than this)

He also mentioned that women with the BRCA1 gene mutation usually do better both in how we respond to chemo and are usually at the better end of the prognosis. No-one had discussed any implications of BRCA1 for treatment with me before.

The question has been asked on here before about whether shoulder pain is relevant. It was one of my first symptoms, and he said it could be significant because it could be referred pain from irritation by the cancer to the diaphragm. (Which is where you feel pain somewhere different from the origin because the nerve supply is connected).

I feel so much more peaceful, and although the answer was the same, that's fine, because I understand better why.

While I was in the waiting room, I noticed a lovely poem by Char March which I would like to pass on, called 'Ridge Walking'. I haven't reproduced it because I didn't know whether that is allowed, but it is easily available on her website.

I hope everyone is as well as possible and enjoying the sunshine if you have it.

Thank you to Ovacome for the advice.

Warmest wishes

Sue

xx

[Hidden]

Hi Sue

What a lovely blog.....So interesting.......I just read the poem you mentioned it is paticularly relevant to me.. as my son is a climber... Thank you for that.. and for the very informative information...I always want explanations and get very frustrated when I am not given any..lol best wishes x G x

[Whippit]

Dear Sue

Thanks so much for posting up this information on the blog. It was really interesting and helpful. I think you're absolutely right to get a second opinion and to keep asking until you get answers to your questions.

There is no way of prolonging remission from the medical perspective and that's really because they take the scientific view - pain in leg, chop leg off, no pain .... but you have another problem - you can't walk.

There was an interesting post this morning about Curcumin. I've heard of various alternative therapies and I still think they're worth pursuing. If they make you feel better the likelihood is you will be better. My Gynae-Oncologist told me after my op that my best chance of survival was my bounce-back gene. Who knows, my sister has had 3 types of aggressive cancer from the age of 27 years. She's now over 60 and still going strong.

Just because the doctors can't prove it don't be persuaded these ideas don't work. It's also worth looking up centres such as Penny Brohn which help many ladies.

I think we might be on the same page. I'm also in remission after surgery and 6 cycles of Carbo-Platin. I'm back at work and generally look and feel really well. Living with cancer isn't stopping me doing anything for the time being. I hope when the going gets tough that I've prepared well and learned from all the wise postings here on this site.

Let us know how everything goes. Lots of love, Annie xx

[nandi]

I also like explanations and often feel I am being a pain, however my Onc. has now accepted how I am and gives me as much info as I want. She also is not afraid to tell me that she has limited experience about treating BRCA+ patients and has been very good at refuring me. For that I also continually bless Lizzie for her encouragment and practical advice.

On the alternative question, has any one tried Iscador (mistletoe) injections?

Best wishes to all

[daisycandoit]

Thank you for that very interesting blog, I have bookmarked it and will give it a good read, love Diane xxx