What would you ask your med oncologist?

Hi Catherine,
I'm only beginning my treatment but I have already talked to my oncologist about reoccurrence and there are a few tools that help them give you a percentage rate of reoccurrence. One is Adjuvant! Online, where all your information is keyed in by your oncologist and you are then shown what your out outcome is after surgery, chemo if you need it, radium, and drugs eg. Tamoxifen. Another is Oncotype DX testing where your tissue sample is sent to US for analysis. That is for early stage breast cancer and there is info on these forums about it. I have had both these done.
As for other questions I'm sure other posters who are through their treatments will be able to advise you.

Best of luck with your appointment,

Mel

Hi Catherine;
I'm happy to hear that you are coming out the other side - you are so right to have the list of questions ready.
I think for the short-term, maybe ask your oncologist what is your care plan, I.e., when and where you go back for check-ups. If you will only be getting mammograms or whatever.
I know you'll get loads of advice, but there's no harm asking what's recommended for you to do going forward.
The very best of luck & health to you x

Hello Catherine
I had my appointment with oncologist just before Christmas (I was diagnosed a month before you) and I found him to be extremely helpful.. He was only too happy to discuss everything including the dreaded hot flushes at nighttime (he prescribed another med to try to help these). We also discussed diet (I have given up dairy as my cancer is estrogen driven). I definitely came away feeling 'sorted' . I am delighted to hear that you are feeling so good - your experience sounds very similar to mine although I do feel that I have lost some of my sparkle in the last month or so? I am wondering if it's the tamoxifen/menopause effect?
Best of luck on Tuesday
Resolute x

Hi Catherine and Resolute,

I asked the question about how to keep cancer from coming back and was told the classical four things:

- keep my weight in a normal range (BMI below 25)
- exercise regularly (really important for breast and colon cancer)
- no smoking (I never have)
- max one unit of alcohol per day

Just wondering about the dairy angle, Resolute. Did you decide to give up dairy yourself or did your oncologist recommend it? I was told not to give it up unless I had problems digesting dairy and if I did give it up to absolutely NOT replace it with soy products. I went to see a nutritionist a few months back and she said the same thing.

All the best

Kath

Hi Kathleen
The decision to give up dairy was entirely my own. Having read a number of reports (including the Kaiser one) on the amount of estrogen present in full fat dairy products and the possible link to estrogen driven breast cancer, for me it was a no brainer .. The thing that really surprised me was how much better I feel without dairy in my diet . With regard to soya, I have replaced milk with rice milk and butter with a 'pure' sunflower spread & although I am taking a calcium supplement, my oncologist said this prob wasn't necessary. I guess we just all have to do what feels right for each of us

Resolute x

Many, many thanks to you all for taking the time to share your thoughts and your wisdom. I knew I could count on you!
You have inspired me to start my list and focus my areas of concern.
I am lucky to be getting on well with Tamoxifen, the only side effect night sweats once every couple of months (bearable!), though I am not crazy about the (major) dampening on the libido. After all the horror stories I've heard, though, I am concerned as to whether unpleasant side effects can creep up over time.
I am fortunate (not just fortunate, that's the way I choose to live) to be very physically active, to have a healthy weight, to eat healthy, not to smoke and to drink once in a blue moon, so I seem to have put the best aces up my sleeve - that's very good to hear.
I'd be very punished if I were told to give up dairy!! However, I know that soy contains eostrogen like substances, so am not surprise one would be advised against it.
I suppose most of my questions will centre on follow up care and chances of recurrence or getting cancer in other part(s) of my body.
My tumour never showed on the mammogram I did at the time of diagnosis, despite the fact that I could feel it very distinctly, so I want to discuss whether I should have ultrasound as well as mammograms.
I also want to discuss Tamoxifen in detail. I'm not opposed to continuing to take it, but while I am lucky to be married to a fabulously kind and patient man, I am not looking forward to another 4.5 years of sex drought, and I don't suppose he is either!! I am all the more concerned about T that I have read a lot of stuff online which seemed to suggest that ongoing research may lead to oncologists lengthening the period of prescription from 5 to 10 years, and possible to life long. Gasp!!
Anyway, thank you all again, I really appreciate your help!
Take good care of yourselves, all!
Catherine

Hi Catherine and Resolute,

I thought you might be interested in this article about the Kaiser report

http://www.breastcancer.org/research-news/20130327

In a nutshell, the report concludes that breast cancer patients who eat mostly low-fat dairy products have better outcomes that those who eat high-fat dairy products. BUT they also say that the methods of collecting data were not very accurate. Nor were other factors such as body weight or exercise taken into account.

The hospital dietitian (I wrote nutritionist in an earlier posting but she is actually a dietitian) I saw a few months back said that there was no clear evidence that giving up dairy was beneficial. Because I have heard all sorts of conflicting information on this subject, and because I like dairy products, I've asked practically all of my doctors the same thing and they all gave me the same answer. Here is a summary of what I was told, and which seems to tie in with the general conclusions of the report.

Bottom line: Dairy is fine but within reason

Most of the day's dairy products should be low-fat. By low-fat, she means the naturally low fat products, such as yoghurt and milk as opposed to hard cheeses or cream.

She also recommended avoiding dairy products marketed as low fat. Often extra sugar is added to make them more palatable. Also the fat soluble vitamins and minerals that were removed with the fat are added back with artificial products. Overall you are getting a product that is much more heavily industrialized than a normal one.

Watch out for high fat dairy in other dishes. Consider a portion of something like quiche that contains cheese as your portion of cheese for the day.

The amount of butter in a day should not exceed the size of the small catering butter packets. Butter is a much more natural product than any margarine type of product apparently.

I'd be very interested to hear about what you learn in your appointment.

I hope it reassures you. Glad to hear that you already have a hand of aces

Kath

Thank you Kathleen,
I have bookmarked the article and the report link within it, and will read both over the week end.
I think the advice you were given sounds eminently sensible to me. My own philosophy is to eat a bit of everything in moderation, within the context of a reasonably portion-controlled and balanced diet as well as an active lifestyle.
I work in the food/dairy industry and have both a personal and professional interest in following research around nutrition and health, and the vast ocean of charlatanism which regrettably exist on those topics!
I am always weary of the "experts" who warn you off an entire food group - when I hear this, my bunkum sensors start bleeping loud.
Anyway, I will report any worthwhile info which may be of interest to more than me from today's meeting.
Thanks again, Kathleen!
Catherine

Dear all,
I realise that I never did as I promised and report on how I got on with my med oncologist two weeks ago.
He anticipated most of my questions, and advised on my follow up plan (Monitoring appt every 6 months + mammogram next August, and once a year thereafter, etc.)
On Tamoxifen, he told me that side effects tend to ease from the beginning, rather than creep up with time - which was what I wanted to hear, as I am tolerating it very well. I can easily live with the very odd night sweat.
I said elsewhere how he handled my query re. Tamoxifen and libido. Not very satisfactory, in that he had little enough to offer or suggest, but he did admit that it was a problem for a minority of women - remarkable admission from a man who is an out and out fan of T as a drug with very few side effects (his words, not mine - though except for the libido thing, I notice few enough bothersome side effects myself).
He suggested that alternatives are also about repressing oestrogen, and therefore probably resulting in the same outcome - with the added potential that I may not tolerate them as well otherwise as I do T.
He made some interesting comment that my risk of recurrence is less than 10%, and that therefore should the sex drought become intolerable I could cease after a few years (less than 5). He finally suggested that I should bear in mind that the last year (nearly) has been quite traumatic, and the libido does not just respond to ingested chemicals, it also reflects one's state of mind.
He has got me thinking quite a lot about the topic. I am blessed with a patient, affectionate and very relaxed hubby who is quite happy to live at my rhythm on this one - and we have discussed this in detail. I plan to go about exploring this area very scientifically, to see if I can kickstart the process in spite of T. I have already procured some lubricant (vaginal dryness was already an issue probably related to the pre-menopause, and T is known to affect this also in some cases), and intend to tackle this as a project. I will keep you guys posted - even if I don't go into more details than you really want!!
Best wishes to all!
Catherine

hi Catherine
Thanks so much for your very honest posts. I get a lot out of them. I will be starting Tamoxifen later in the year so am really interested in how you get on. I know side effects may or may not happen to me but I really like to have all the facts in advance, so thanks again. Best of luck with the research. I think your oncologist may have a point re the stress of treatment and diagnosis, the mind is very powerful, but there's no doubt the body takes a battering too. Keep us posted on how you get on.

Hi Catherine,

Have you considered acupuncture? My radiotherapist was in favour of it for menopausal symptoms caused by going off oestrogen, based on favourable results from research in Italy.
I would try it if my symptoms got worse, provided the acupuncturist was well qualified and familiar with cancer patient needs.

Active

Thank you Mama and Active for your kind and constructive points.
I have found great value in other's generously shared experiences on here, and I intend to give back a bit to the limited degree that I can - bearing in mind that I've had only "a little bit of cancer" .
Active, I would be quite open to exploring the accupuncture angle. My regular physio, who has treated me for years for sports injuries and such, is a qualified accupuncturist and has used it very successfully on me, in combination with manipulations, heat, electricity, exercise and orthotic soles, to treat frozen shoulders and gammy knees I'll ask her if she can recommend someone.
Thanks you again!
Catherine

Hi Ladies, I read your posts with huge interest also and like Catherine has said shared experiences are so helpful.I also will be commencing the wonderful "tamoxifen"after radiotherapy.I have read so many varied reports from peoples experience of this drug , that I am quite bothered about it, fear of the unknown I suppose.Please god it will go ok for me and if not there are always other angles to think about.Thanks again ladies for your shared experiences.Best wishes ,
Happymum.

Hi Happymum,
I can totally relate to your anxieties on T. I remember when my oncologist gave me my first prescription: I went to fill it straight away at St James' pharmacy, but it took me two days to take the first pill... Throughout my treatment, I have adopted as much as possible the "suck it and see" approach, trying not to anticipate problems. I had limited as much as possible reading about side effects and "horror stories" (when I use these words about T, my oncologist raises his eyes to heaven and lectures me ) but I still was anxious.
And guess what, apart from the libido problem I reported, which may or may not be caused by T, the only noticeable side effect I can report is the very occasional night sweat (maybe once month or so). I still have my period, and it is regular as clockwork. I am not putting on weight (I am a very physically active person who watches what she eats anyway). I have no joint or bone or other pains or aches. I do not have hot flushes (that appears to be the most commonly reported side effect).
I have a little theory, which may or may not be accurate. I suspect that the totality of many women's cancer treatment (surgery, variety of chemo, herceptin, radiotherapy, hormone therapy.....) is incredibly traumatic to their entire system. I think it becomes difficult to attribute specific side effects to specific elements of one's treatment. And the fact is that people respond very differently to the same treatments.
So, my very humbly offered advice to you happymum is to try and chill out about it, and not anticipate "horror stories" which will more than likely not affect you at all.
Good luck with your treatment, and thank you for your kind words!
Catherine