…Hmmm, yes, I thought Tam was for Oestrogen+ve too - maybe they’re getting their hormones mixed up a bit here! They tend to be a bit clueless about the difference between synthetic and natural progesterone, because they kind of have to buy in to what the drug reps tell tem, and they sure as hell aren’t going to tell them that their patented (ie money making) products aren’t going to work in the same way as the natutal versions. It’s ironic that synthetic oestrogens actually DO mimic pretty exactly the actions of natural oestrogens, but even then they don’t put them in their proper balance - naturally, you would produce oestrone, which is then converted to oestradiol (the strongest oestrogen in the body and the one that drives all the femal cancers), and then a much weaker oestrogen called oestriol is what’s left over. That’s the one that stops urinary incontinence, vag dryness, saggy sking, etc. If you’re oestrogen -, then you should be able to ask your onc to prescribe you oestriol, and if you’re lucky then you might be able to persuade your GP to prescribe you NATURAL progesterone. I was very pleased to have got confirmation from my onc that Prog +ve actually means synthetic progesterone pos and not natural prg pos.
Two books which would help you greatly are:
Natural Progesterone, by Dr John Lee (look online and there’s tons of info about this book and John Lee’s work, and about synthetic vs natural hormones)
What Your Doctor May Not Tell You About Breast Cancer, Dr John Lee, Dr David Zava and someone else. This second one is a lot more in-depth, so have a look online and at the first one first. My brain’s co-operating today, but I empathise about the fog and the total lack of brain working-ness during all this illness and treatments, I really do! I can barely think what my name is on bad days!
Angel
Don’t know if this will be of any help, but I’ve had 2 mastectomies complete with lymph node removal. They took 11 RHS lymph nodes the 1st time in December 2003/January 2004 (cancer was found in 3 of them) and 29 from the LHS the 2nd time (in December 2006) because it was Inflammatory Breast Cancer which is a cancer of the lymphatic system.
I was initially worried about lymphodema, particularly as it seems to be mostly a matter of luck whether it hits you or not, and I still try to remember to wear gloves when gardening, don’t get carried away with blackberry picking, avoid too much hot sunshine, etc.
I’m having 3 weekly intravenous herceptin (indefinitely) and the chemo nurses use my right arm because the left one still has damaged veins from intravenous antibiotics and FEC in 2004. I asked whether they would need to use my leg or elsewhere after my 2nd mastectomy, and they explained that arms were better and the herceptin was so important that it was worth any risk. So I’ve now had 12 or 13 intravenous catheters, several knife cuts while cooking, a couple of small burns, regular infections in hangnails (I use fucidin antibiotic cream on these) and several other general ‘incidents’ to my lymphodema susceptible arms - and I’m still absolutely fine.
Don’t know what the moral of this story is. Some people get lymphodema and some don’t. Some people get cancer and some don’t. You have enough to worry about already without the spectre of lymphodema hanging over you.
Lots of love,
Lynn
Thanks Lynn, it’s always good to hear from people who’ve run the gauntlet and survived! I really thought that they weren’t allowed under (almost) ANY circs to use lymph-risk arms, I’ve been told that if both arms are at risk then they have to use legs even for BP taking. My chemo nurse this week said they use feet veins if all else can’t be used for any reason, so I’m surprised they use your arm, albeit the one with the fewer lymph glands removed. I had 17 taken from LHS axilla, and was freaking out at the idea I only had 3 left to do all the work!
Thanks so much for your post, it’s good to hear positive stories like this
I hope you are feeling a little more positive today. I had a bilateral mastectomy in June (with a long history of mistakes along the way) I also had an MRI scan which showed scar tissue from a previous lumpectomy which turned out to be a 2.5cms cancer tumour - but thats another story.
I have had intravenous antibiotics, chemo, BP, blood tests all on my arms as the BP readings on legs are never accurate - again long stories but I cant be bothered to repeat them - and so far so good, no sign of lymphodema. I garden etc etc. Don’t worry, be sensible but dont make it the centre of your world, just carry on as normally as possible. Just reading some of the comments on this website make my situation look not to bad.
I think you have seen from your comments that lots of people are thinking of you, and I will say a little prayer for you and everyone else that needs a bit of comfort in their heart. Even if you dont believe in prayer, or God or whatever, it can do no harm to put out some positive vibes into the universe! There is a very thought provoking book called “conversations with God” it makes for good reading.
I have had bilateral mastectomies in 2006, four tumours in the left breast and axillary clearance. MRI showed further tumours in right breast so three weeks later right mastectomy with axillary sampling. Like you I was worried about lymphodema but one year on after chemotherapy, radiotherapy and hysterectomy, I regularly see the lymphodema nurse and continue life as before avoiding too much repetitive lifting etc. Just be sensible look after your skin but be kind to yourself. Swimming really helps!
My dx was 2 tumours in right breast and an “anomaly” in left breast, evena fter tests/mammos etc. I opted for a bi-lateral mastectomy and was pleased I did. When the path results came back there were 3 tumours in right breast, totalling 5 cm, one of which no-body had picked up and areas of dcis in left breast. I said it was a good job I opted for the bi-lateral and the surgeon just said, “yes it was”. I still can’t get my head round the fact that one of my tumours was not picked up by any of the current testing! Survergy was March 2007 followed by chemo and rads.
Anyway that’s not what I wanted to tell you. I too do a lot of work with animals. I train a large German Shepherd in Working Trials - a bit like Police Dog Trials - and spend at least two days a week in the fields with like minded people being pulled over the place. Two of my friends came to me and told me they had had breast cancer and both have developed lymphodema - and to be honest it doesn’t seem to interfere with what they’re doing. One wears a sleeve and only occasionally works without it, but the other one doesn’t wear a sleeve and has a very swollen arm. Again, she never complains and just gets on at a very high level of training, including protection work where the dog bites the sleeve! I know everyone reacts differently and your situation is also different but I’m just trying to give you some hope!
