Any 40-ish survivors?
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Thinking of you Meegan - Hoping it may lose some energy...Be safe.
Hi Ltothek,
My hair grows slowly also,but it has come back in nicely. I am 1 year out from last chemo. I am 45 now and no period here either. Each time I go for my checkup the blood work shows not completely in menopause. I am not looking forward to changing to AI either. I am on fareston to keep estrogen levels down.
I have not been one to take any vitamins or even Tylenol really. I have just started taking Biotin,Folic Acid, and a magnesium supplement. Hopefully I am doing the right thing by adding them to my poor body. I do think there could be something to the addition as I also feel more peppy!!
I am wondering about the MRI's. It bugs me the ONC says they are not routine for me. I'm not sure why. I was told the usual...but I still would rather catch something early than wait. I wonder if I should address this with my family doctor???
Eema - Amazing you did not get that call...
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Kmur, get to the bottom of why MRI is not routine for you. At a young age, unless your breasts are so fatty they swear they can read your mammo perfectly, you are getting likely the same runaround we all do. Keep pushing. My husband had to get pretty ugly with my onc before she capitulated, and I was ready to move my treatment to another hospital. They said ABSOLUTELY I should be getting MRI.
Fact is, there is no reason not to get them, except to spare the hospital time and effort.
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Kim - I am allergic to the MRI contrast, have to do pre and post med's to avoid an ugly rash/breakout, however my onc agree's that MRI's are the only dx tool for me unless something 'show's up'. I had a post treatment mammo but questioned why when I a) have no breast tissue b) they were barely able to mammo anything but the skin & implants and c) the mammo's couldn't even get to the chest wall where I would most like recur. I really haven't had to fight for the MRI's after that initial mammo (unless you count insurance crap). I hope you can either talk your onc into the MRI, even if just for your peace of mind and find another doc more willing to work with you.
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Hi LtotheK,
I really can not remember exactly what the ONC said . It was the usual talk about risk....and even if we did do them routinely chances are I would "find" a recurrence first anyway....I really think it was something like that....but now that I am reading here it makes me want to revisit this with him in November. I was in the best shape of my life when I got the news and did not feel anything and was only two months late with my yearly mammogram...I had 4 positive lymph nodes. It does make me nervous sometimes to have that wait and see attitude....I don't trust my body anymore....
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Hi Michelle,
I will do that. I ask each time I see him..." Are you sure I don't need to do some kind of scans" the answer has been "It is not routine" I even asked if this is insurance related and the answer was no,but I'm not so sure. I didn't think MRI scans had much in the way of radiation????
Thanks for the advice ladies...I may have to push harder....
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I wanted a PET/CT scan...I know over board but really I did not trust my body any more or my onc's statement that I was NED because she said I was NED. I wanted to KNOW how she KNEW I was NED. Of course there was no reason or se's indicating a PET/CT scan so I was told no.
I saved up and paid out of pocket for a full body thermography scan. The only thing the scan showed was a issue with the thyroid. My onc never even discussed the thermogram with me but my GP called when she got the results and said the scan recommended an US of the thyroid. The US of the thyroid showed two small cysts (B9) on the left and a small 5mm nodule on the right side. A Biopsy was recommended. Long story short...I was dx'd with Thyroid Cancer 3 weeks later. The thermography found the thyroid cancer well before I was symptomatic or a doctor could have ever felt the nodule.
I guess what I am trying to say is there are alternatives that can offer a 2nd opinion without radiation. I don't recommend it as an replacement to other traditional dx tools but it is a good tool that looks at function as opposed to anatomy. It can highlight problem areas and help focus the doctors have a better idea of where to start...
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OMG... That is so fortunate for you that they found that... And trusting your instincts... Kudos to you Michelle.
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Thanks Michelle,
It is very good to hear advice from those who have been down this path. Amazing Michelle...so great you caught this. I don't trust my body either. I want to know for sure... Thank you all....I will be getting me some kind of scan. I will ask my BS about thermography or at least MRI. I did ask about paying out of pocket...we would be willing to do that. I will let you know how I do....
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Kim - most doc's poo poo alternative medicine, my onc completely ignored the report and never really even discussed the ThyCa (I know, I need a different onc but while things are stable she is convenient)...Do your own research as well and then you can decide whats best for you. Good Luck!
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I looked into Thermography when I was first diagnosed. But then things kept progressing with the conventional test, ending up getting a PET/CT Scan, which came back clean. I decided at that time it was not worth the money because I was going to be doing chemo due to my positive nodes. That being said, I was planning on looking into it again now that I am done with chemo and rads and having a scan around the first of the year.
Any advise of what to look for when choosing a facility which does the thermo scan? Thanks.
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Thank You again Michelle,
I looked into thermography and we have an organization called BRAS right here in town. The cost is not what I would have expected. Looks like a full body scan is 400.00. I thought it would be more. I will look into it. Again, thank you for sharing this with me.
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Hi Proudmom-
I must have posted at the same time you did....I looked into it too and found this group called BRAS ...I am going to call them on Monday. I have never had a PET scan. I have had every other scan seems like.....I just want to stay on top of this. I will look at it again to see where the offices are located.
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Hi Again.... Just wanted to let you know I found this link to find thermo imaging centers.
Hope I did that correctly,but it does list several in California.....
I really don't know how you know for sure which one is the best???
Also ...Hope all of our East coast friends are doing ok. Thinking of you all today.
Kim
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Hi Kim and all!
I think it is worth you trying to get a fuller scan than the reg. mammo - hope I've got the gist of this thread!? I had 2 mammos and nothing was seen till the onc. was alerted to poss. problems because of my lymphedema. The CT scan of the whole of my upper half then picked up the several mets high up under the arm and under collarbone, which the mammos had obviously missed. I too had 4 l.n.s affected and am er+ so similar pathology. Hope you manage to sort something out and it is not too expensive. We have the NHS here which is free health care, but longer waiting times. Luckily, my partner pays for private insurance through his work so I probably get better service and access to my onc, which I'm so grateful for.
I've been ill for nearly all of the school holidays which has been a total pain in the bum - first flu, then a very painful infection in my l.e.arm, now tonstillitis - at least I've losing some weight even if I do feel lousy! Having a little family party tonight for my nephew's 11th birthday, haven't seen them since Christmas, so looking forward to it. Had 4 family birthdays this month actually, so quite an expensive one!
Did you mention your son had braces, Kim? I assume you mean on his teeth as I know British and American English has differing words sometimes ! My son has had them for a year and they've been really hard work as he keeps breaking the metal bits off them. Make sure he keeps away from hard or chewy foods - popcorn is a big problem, as are ribs and chewy gums - we call them wine gums, though there is no wine in them. Make sure he really cleans in between them too. We are going to have to be really strict from now on otherwise he'll have them on forever!
Love to all on here, Sarah x
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Hey! I don't know if you are still on here or not. Butmi wanted encourage you about the 11 year old girls. 11 was by far. You just keep positive and tell her how you can't wait for her teen years bcse they are going to be awesome. We just said that over and and over. With the exception of one to two days a month bcse of her period they were. One day when mine was 14 I just looked at her and said "oh no, we've already done the snotty pre-teen thing. Remember when you were 11?". And then I just walked off. It was amazing. I also recommend the Total Transformation CDs and newsletters dealing with teens. You can do it! Hugs! Heidi
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Hi Sarah and All,
Jeez...sorry you have been not well. Hopefully you have bounced back. Yes, I did mean braces on his teeth. So far he is doing well. Kinda painful at first but better now. I really know what you mean about mammos. I had mine just like I was supposed to and I remember asking my onc the question we all probably ask "how long have I had this" and his feeling was a while. I don't know if he meant the cells or the tumor ....looking back I have so many questions,but really it wouldn't change anything now... I will be looking into the scan on my own. Don't want to do the wait and see...
Sarah, Have a great time at the birthday party.
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Hi everyone. I hope you East Coasters are safe and sound in your homes!
It's interesting isn't it how different oncs do different tests/things. They all went to med school right?? How can one say a MRI is standard and another say they are not needed? I'm with you Kim. Push for whatever you need to feel comfortable. I also want to know early if there is a recurrence or spread. I'll ask my onc when I see him this week what happens next for me. I'd imagine nothing as I've still got rads to go but no harm raising it.
I'm currently lazing on my bed while the girls watch tv in the other room. My DH has gone to the pub with a mate to talk about their football team. Boring!! Sarah, my husbands family is English and so is his mate. Their team QPR has been promoted into the Premier League this year. Big news in our house! I don't know how they fill 2 hours talking about QPR ... but they do. I'm enjoying the peace.
Have fun and your nephews party tonight Sarah. Hugs to all.0 -
Hi KiwiMum,
Thanks...I will be checking to be sure. I may even have a follow-up with my BS, she is my age and I know she would want me to feel better about staying on top of things.
I hope your last few Taxols fly by for you. I'm sure you will find rads to be much easier than chemo. I really love college football season here in the states...Saturday afternoons are fun football days!! I have a hard time picking a favorite team....
Have a good evening ladies. It is bedtime for me.
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Hi Ladies!
I hope you on the east coast are all OK! We will get some wind and rain tomorrow, at least that is all they are calling for now.
So yesterday, as I was disparaging my GP to my husband, her office called and told me I had to make an appointment with her. I asked for what, and all the secretary could tell me is "a medication review." I asked if I was going to have to pay for the appointment since she asked me to come in, and the secretary acted as if I was speaking Martian. WTF? Why do I have to pay for her to see me? In fact, she called me for the appointment, should I charge her my hourly rate? I haven't seen her since she told me she signed off on a bad mammo without informing me of the results and really had no intention of ever seeing her again. My DH says I should go, tell her why I'm upset with her, then ask her to recommend another doctor. That, and listen to what she has to say.
Ok, Paul McCartney is on SNL singing 'Jet'. I'd rather watch him than complain about someone I never want to see again! Have a great night, ladies, and stay healthy and safe!0 -
Hi All,
Eema...good luck with that appointment...it is not fun being the patient. I do not do sick well!!
Just prior to my DX we moved to another state so all of my friends and family were no longer local and all new DRs. So I didn't even have a GP yet. Have only seen her once,but I really liked her. I am going to set up a time to see her again because I am set for surgery Sept 6th to finish my new implants ....but I have been having what I think could be neuropathy in my toes on one foot. It is so weird,at first I thought it was swelling,but I can not see that foot being any bigger. Gosh , I even looked up blood clots,but I don't think that is it ...no warmth or discoloration. I think it could be the Taxotere??? I thought I would be sure before I have my surgery. It would be good to pull her back into my army of Drs....YAY
Sarah- I forgot to ask you how your get together was with the BC organization? I can't remember the name,but thought you were having lunch with a group of ladies also with BC?? I am set to do the same in Sept. ....not sure how this will be ....I like to be a happy person so if it gets too sad ...I don't know if I can do it. I hope that doesn't sound selfish...
Take care all,
Kim
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Great to hear someone so positive. Hey there is a new test out, brevagen, which may help everyone. It gives a five year and lifetime risk assesment, the fda just approved it. Good luck and best wishes.
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Interesting week...Earthquake, Tornado and now Hurricane Irene. I hear NYC is already flooding as of last night, and I expect to lose power due to high winds at any time. And I'm in the middle of the state, so this is mild! Hang tight ladies, I saw a few grasshoppers in my car, locusts must be next.
I hope everyone near the coast is safe, and especially those in VA and lower Manhattan who seem to be getting the worst of it.
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All,
If you are really interested and serious about being your own advocate when it comes to various types of scans for follow-up, I'd highly encourage you to check out www.cancer.gov (NIH's website), www.asco.org (American Society of Clinical Oncology -- national professional assn of oncologists), and www.sabcs.org (San Antonio Breast Cancer Symposium -- national annual meeting). I worked with academic/clinical medical oncologists for over 3 years, and these are the places where the newest, latest and greatest research is being discussed. MRI's and other scans may be more particular to radiation oncology, so I would find out what their professional associations and clinical journals are, and conduct your research there. If your oncologist is private practice, they may not be up to date on the latest and greatest research. Academic oncologists are very interested in disease-free and progression-free survival rates, benefits vs. risks of treatments, etc. These are the sources of information that guide the treatments at places like Mayo...must read!
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Hey Sue....hold on tight up there. Have been thinking of all you girls on the East coast. Know what you mean we better find some good bug spray just in case. All kidding aside though I hope all of you are doing ok. We have just heard some pretty large numbers of homes without power....
Hi Martha- Thank you for that information...I will be looking into it. I think for so long I have been focused on getting through treatment...didn't really think about the staying healthy part.....am now though!!
Hi jlake- thanks to you too . I will check that out as well.
I really do like my onc. He is always up on the latest ( seems like anyway ) He does attend the San Antonio Conf. and he does fill me in on the latest numbers regarding treatment outcomes. He IS very old school at the same time. Not much on vitamins and that kind of stuff other than vitamin D.He always says "AS long as you are eating the proper diet...you don't need vitamins. Don't know that I feel that way...
Take care all,
Kim
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Hey ladies! Glad to see some activity on this thread, as well as some new names. I have not been around as much this week. I had jury duty which turned my week upside down.
I hope all the east coast folks are doing okay. It seems like things were not as bad as expected. Here in Atlanta, we have Irene to thank for a gorgeous and uncharacteristically low humidity weekend. Still really hot though.0 -
Hey Lisa,
Good to see you.....You know all these years... I have not had jury duty....Not complaining though!!
Take care and hope you have a good week :-)
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Hi ladies. I'm with you Kim, I like my onc. He is a real geek and into the science of it all! He is off in a couple of weeks to attend the San Antonio Breast Symposium and then onto Europe to attend another Breast Cancer conference.
Hi Lisa. I've done jury duty once and didn't get picked for any trials. It was a bit of an anti climax as I was quite keen to do it.
I'm off for chemo again tomorrow. My hair, which was growing for the first 5 weeks of Taxol has completely stopped growing. I'm totally unhappy about it! I guess I'll have to wait another 4 weeks for it to start.
On the downside I've been feeling quite tired in the last week and have started getting an ecema type rash. Roll on the end of chemo I say.
In anticipation of our new pool I've just ordered a Swim Form online. I rang and asked the shop where I bought my breast form if I could swim in it. She thought it would be ok occassionally but not every day. In NZ they want $280 for an Amoena swim form. I've just bought the same Amoena one online from the UK for $120NZD, including shipping. I couldn't get any of the US sites to ship here. That's always the pain of living down the bottom of the world.
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Kiwimum, any time you need anything from the US, especially anything under 4 pounds, I'll be happy to ship it for you. Just tell them you want it sent to your US address (so grand sounding!), and I can mail it from here. First class international is cheaper than anything else. I ship all over the world all the time, so it's no big deal for me.
Of course all of you girls from other countries are open to that offer too.
The wind has died down, just some branches off the trees here. Warnings are still in effect, but I think it's over for the most part here, but still barrelling through the northeast til tomorrow. I don't think they usually roll up this far north, I hope everyone is still safe and prepared.
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God Bless You and many, many more years of survival, from a 17 yr survivor(Praise GOD). msphil (idc, stage 2,0/3 nodes, L mast, chemo, rads and 5 trs tamoxifen)
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Hope all of you on the east coast are safe and sound. We battled 110 degree weather today....rain is forcast for this next weekend, we can only hope.
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