If you are not Stage IV but have questions, you may post here
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Kath I just think it all comes down to the luck of the draw........as you have probably read, I didn't have any nodes positive but here I am stage IV. My doc kept telling me when I was dx IV that I was defying the odds.........but I always knew for me it was a case of when not if as I had no follow on treatment other than a mastectomy due to be being allergic to drugs that were on offer and the AI's were not yet available.
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I am so happy and grateful that femara is being so kind to you, chrissy! tomorrow morning, i go to do the pet/ct scan that was postponed. oh no! no coffee in the morning? ah well, it will taste even better for the waiting. wish me luck!
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Kath I do wish you luck! Here's hoping the scan shows all normal and I know you will enjoy that cup of coffee when you are done......lol.
Love n hugs. Chrissy
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Chrissy - Something has been bothering me for sometime...I had a brain scan shortly after chemo ended because I was having headaches. The scan showed 7 deep white matter tiny, tiny lesions but the radiologist and my MO were not concerned with mets because chemo can cause this. I got a second opinion on the first scan and that MO said not mets. I had my 2nd brain scan and the lesions are exactly the same...I went to a brain specialist and she said it is not mets; likely from chemo or from thyroiditis issues.
Should I move on or keep pushing to be scanned every 6 months?
Thanks!
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Peaceandstrength, as you have had the opinion from two onc and a brain specialist that what is there is not mets and there has been no change between your scans I would breath a big sigh and not worry about it any more. As for scanning, we need to remember that each time we scan something we are giving ourselves another dose of radiation which is actually toxic so the less we can do the better so I would probably just do annual scans.
Moving on sounds like a great idea as moving on means you are living life to the full.
Love n hugs. Chrissy
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Chrissy - I appreciate your words. I do need to move on now.
Many hugs and blessings to you.
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hi everyone
I have a question - for the past month or so I have had lower back pain. I have suffered from this in the past though. I have had a prolapsed bladder too which was operated on 3 years ago but has since been problematic again. However it also feels like my hip is involved now too. But then I just ache everywhere in general. I have put on weight since chemo, have gone through menopause with it as well, and get out of bed in the morning stiff as a board. I feel old!!
I can't stop worrying now that my cancer has returned and I know I shouldn't pre-empt it but I just feel so achy that it's not right. Does lack of estrogen bring on these aches? What does cancer 'pain' feel like? I am going away next week with my children for their last week of school holidays and hoping I'll be better by then but I guess if not I just have to go back to doctors to get tests. I just really don't know if I have the energy to cope with all that hospital stuff again. Part of me wants to put my head in the sand. It's getting to the point where I can't ignore the pain though it starts affecting quality of life. I haven't really taken any anti-inflammatory meds or other pain killers to see if that helps either.
Any suggestions or advice appreciated.
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Hi Kruise, sounds like you are in for a fun week away with your family. On the question about aches and pains due to lack of estrogen the answer is a definite yes. At 44 under normal circumstances you would still be producing estrogen and what you are feeling wouldn't normally happen until you were into your late 50's or early 60's.
As far as your hip is concerned you may be developing some arthritis.
Having said all that if it is really concerning you and even though it would be a pain to get checked out, that in reality would be my advice. It'a always better to know than to keep wondering.
Have fun with your kids but when you get back do make an appointment with your doc as I know it will give you the peace of mind you are searching for.
Love n hugs. Chrissy
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Hello Ladies, I posted this question in another thread but would like your opinions. My doctors (BS, MO, RO) all say they do no testing after treatment is done, apart from mammograms, unless I exhibit symptoms. I am a little worried about this, as I am stage IIIC, HER2+. What is your experience with testing after you finished treatment...did your doctors do tests on a regular basis, and how often? Do you think I should insist on testing (catscans, bone scan etc) ?
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Hi Debic, I don't know what the normal protocol is in Jamaica, but I got the works, bone scan, CT and tumor markers, after my surgery. I got a CT again 3 months later to follow up on a few funky spots (all deemed to be benign). I am Stage IIa. If I were you, I think I would push hard to at least get baseline bone and CT/PET scans. Best wishes!
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thanks Chrissy - your reply was very helpful. I am looking forward to the holiday and you are right - it would be better to know. Cheers.
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Debic, I didn't have any testing other than blood tests and it wasn't until I was having excruciating pain that I was tested with scans.
I think different countries have different standards of follow up where standard of care for treatment is pretty world wide but there is no reason why you can't push for further testing.
Good luck!
Love n hugs. Chrissy
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Debic, short of having symptoms, a lot of scanning is just going to give you a lot of unnecessary radiation and possibly create unnecessary biopsies due to the unidentifiable "spots" scans will show that then need to be biopsied based on your hx of bc -- even though they're probably just remnants (like scarring) from past infections, etc.
OTOH, I had a PetScan prior to starting chemo -- mostly b'cuz there was a gap of several months between my original dx and when I finally started chemo -- and it proved to be extremely helpful to compare to a recent scan. In my situation, everyone thought I had liver mets (in addition to already-dx'd bone mets), but the 5+ year old scan clearly showed a large hemangioma that, thank goodness, I already knew about. But without that old PetScan, I might have been facing a biopsy or been treated differently. So, if anything, I would ask your onc if he/she would consider doing one base scan so that you have it for future reference, if ever needed. (((Hugs))) Deanna
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yorkiemom and Deanna , I had CT and bone scans before surgery so I guess that would be my baseline, but the docs say, no follow up scans after I finish treatment.
Chrissy, that seems to be the protocol with most ppl I have spoken to, in other countries too (US and Canada) but your experience, and the experience of others on the Stage IV board, indicates to me that that scanning is necessary, because isn't it better to find something earlier than later, i.e, when symptoms appear, isn't the cancer more advanced and that much more difficult to treat?
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i just got the results of a pet scan i had requested, and my onc had no problem doing for me. the only symptoms i was having was continuos pain in ribcage, deep total inside breast itching, and so many lumps i dont recognise her anymore. nodes swollen in axilla and also theres one supraclavicularly. and they found even more today at clinical followup breast exam! so, no signs of mets. YAAAAY! and i met a woman from BCO, her name is slowdeepbreathes, and that was amazing! She attended this meeting with me. and i had a melt down. and then we had lunch, i am sure she thought i was a nutter, but she did not treat me like i was one... she was tremendous, so next time i will drive to see her! any way, i wanted to thank especially chrissyb, for love and support she has given me here. but i am now going to forget all about all the enlarged nodes i am having, and am just going to agree with what they say, which is that they are doing the job of all the removed nodes. well i am going to pRETEND like its that, and just go along with it, for the sake of peace. and i want my port out- and i just want to forget about this whole thing. and i want to only do mammo and ultrasound in the future every six months.i have just had it with all this, and was crying all the way home, not like me.. i am not leaving BCO, however, it is my tried and true method of learning, and feeling better and just so not alone. and sometimes i even crack a smile or laugh here. so, i just wanted to say thanks to all the good women here, who have taught me, and seriously enriched my life.
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Kruise,
I am 46 and am feeling exactly the same way. Aches, weak muscles, fatigue, sore back. Assuming taxol. I have numbness in feet...I know that's taxol. I'm in menopause from chemo and just had hormone levels tested,,,very low. Doesn't look like it is coming back. But i hope the other stuff lifts. Also very low drive.
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Kathec,
YEEHA on your good scans. I got my port out 5 weeks ago, my MO said to yank it, if I was comfortable losing it. So goodbye power port.
I also feel that I have met so many intelligent, wonderful women on this website. Thanks to all.
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Kathec, so happy for you that scans are negative. I know exactly how you feel. I don't want to do any more tests, I want to be finished when I am finished and not think about it any more! On the other hand, I am afraid that if I don't do scans, it will be "too late" to have any effective treatment if I start having symptoms, and I know I will be worrying over every little ache and pain forever more.
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Woohoo Kath!!!!! So glad to hear that all is clear and you are going to move on with life! Support is given freely as it costs me nothing and I know it is received with gratitude, so you are more than welcome.
Debic there is a debate on whether finding mets early is better than late ........from my own experience, my bone mets were quite advanced but the treatment was the same as it would have been had they been early. Even though it took a little longer, that treatment got me to NED and has kept me there. My doc still goes on how I am feeling or if I am in pain that has hung around for a few months.......in fact, I argue against scans.......lol. For instance, I mentioned to my doc that I had been having a pain for quite awhile in my liver area and straight away he said I should get a CT. I argued with him that I thought it was just muscular and I would mention it to my Trigger Point Therapist. He wouldn't take no for an answer and wrote me a request. The next time I saw him he ask why I didn't have the scan and I told him that I was right, it was muscular as my Trigger Point Therapist worked on that area and the pain disappeared and I'd only mentioned it a I wanted it recorded.
Debic we really do have to know our own bodies and how they work for us then we can tell if something is not right and needs medical intervention. I don't spend my days worrying about every little ache and pain but I do note them and just be aware of whether they hang around or disappear after two or three weeks and if they are still hanging around, I get them checked.
Love n hugs. Chrissy
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Thanks Chrissy so glad to hear you're NED. Can I ask why you don't want to gets scans...especially in the case of you having pain in the liver area, which would be very scary to me.
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Debic, having a lot of scans is not a healthy thing to do, as my doc once said, early on when I was having lots of scans, that the amount of radiation I had had was tantamount to having radiation therapy. If it's not really necessary I do try to avoid just because of that factor. On the question as to why I didn't have the scan that was ordered when I was having pain in the liver area. If the work that my trigger point therapist did didn't relieve the pain then I would have had the scan but the pain to me felt more muscular than anything else but had that not worked I would definitely have had the scan.
Debic we really have to learn to listen to what our bodies tell us and understand the differences in pain. Our bodies really are amazing and if we listen to it we can learn to discern what it's saying.
Love n hugs. Chrissy
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Hi, Kathc!! So glad your scans are good!! What a small world! I also met Slowdeepbreaths at a luncheon in Long Beach! She is so sweet! I live in Torrance!! We should all get together sometime!! Right now, I am babysitting my granddaughter everyday, but it will go to 3 days in a few weeks!! My hubby helps too!! This thread is wonderful, thanks Chrissy!!!
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kathec,
So so pleased that your scans are good, what great news for you. I hope you can put your tissues away now. Don't like to think of you crying
. Here is a huge hug ((Kathec)) for you. And yes, I do think Chrissy is fab too, helping out us stage iii'ers. Thank you Chrissy xx
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Thanks Chrissy, you are such a great help.
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kathec, sooo happy that your scan are good, i love goo news
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helo ladies, i finished my last herceptin last wednesday july 09, i should be happy but im not. i am scared since now my treatments over. the worst part that scared me even more when MO said he will schedule my PET scan in a month due to CT show 1.8cm shadow in my rigt liver on dec 2013. Follow up PET on early Feb 2014 nothing lite up. ...all clear. now 6 months later MO wants to do another PET scan. the past 6 weeks i have pain come and go on my right upper abdomen...dont know how to decribe the pain, but it not painful. so that made me think of maybe that what causing the pain what CT scan show 1.8cm last dec? sigh....
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: ) for all of you!
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Hi Soriya I'm pleased to hear that your onc wants a follow up PET to check your liver.......that means he is conscientious and is listening to what you say and that's a really good thing. It sounds like he wants to make sure that what was seen earlier was either nothing or that it is gone.
I understand how you feel right now as you are starting the next phase of your journey.......going from many docs visits and regular visits to an infusion room to virtually nothing. It is scary so don't be afraid to verbalize your fear any time you need. To help fill the gap that has now been created in your life try to do something that you have been wanting to do for a long time, take on a new hobby or craft that you can immerse your self in. By keeping your hand and mind busy you will hopefully find that you are thinking of cancer less and less.
Good luck with it all!
Love n hugs. Chrissy
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thank you chrissy!
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