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pollym
Member
since
01-05-2012
387
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14-07-2018
08:33
Thanks B. Six months is such a long time for you. My heart goes out to your daughter having to go through all this at such a young age. I hope all is going as well as it can. It is the genetic counsellor who rings - they asked whether I would be prepared to get the results on the telephone when I had my test done and I said yes as it is a bit quicker! I hope you hear something soon, Polly x
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14-07-2018
10:43
Hi Blovesdreamies, I had my genetic testing a few days after your daughter. I have just been sent a telephone appointment for Thursday so I assume they are back! Has your daughter had hers yet? Take care, Polly x
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05-06-2018
12:47
Hi Hollyberry, Hopefully you have had your results by now - I have recently been tested and told it would take 3 to 4 months! My oncologist told me on Friday that they come back more quickly if a mutation is found i.e. once they find one they can stop searching! Otherwise they are searching every little bit of genetic material! Polly x
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17-01-2018
02:13
Hi delly, Thanks for the reply - I am recovering well now. Back to clinic this afternoon to see if they have found anything yet to account for the micromet! xxx
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21-12-2017
10:09
Hi am, You and me both eh! Two cancers is just not funny. Were they both in the same breast? Mine were in different - one in 2007 and one now. Your first treatment sounds like mine although I had stage 3 cancer so had to have an axilliary node clearance as well as a mastectomy. I know what you mean about going through it all again. However, I have the opposite problem in that I am terrified that the only treatment I have been offered is the mastectomy! Although I have a micromet in my lymph node, as they cannot find the invasive cancer, the surgeon says that mastectomy is all I will need. I am terrified at the thought of no treatment especially as new BC is hormone negative the same as yours - I dont know whether it is her2 negative as they cant find it although they are looking again at the sample. I really wish you the best with what you are going through - it is hard but at least you know you have done it once and I think maybe the treatment is even better now than it was when we went through it xx
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21-12-2017
10:01
Hi Sam, forgot to say that because I was having a mastectomy they also did a SNB as they could not do this after a mastectomy. This found an invasive micromet in one of my nodes so they removed that one and one other. They have since failed to find the invasive cancer in my breast! So, it is there somewhere but where? So the good thing for me was that I would never have known about the micromet in my lymph node had I not had a mastectomy! Having had BC once before this is one of the reasons I wanted a mastectomy - I do NOT want to get a 3rd time! xx
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21-12-2017
09:58
Hi sam, I have had 2 mastectomies - one was 10 year ago for stage 3 BC her2+ and ER/PR+ - so had full ANC too. My latest was due to a finding of high grade DCIS on the other side - I was told to have lumpectomy and radiotherapy but I wanted a mastectomy and the surgeon was okay with that. I also did not want reconstruction and that was an interesting conversation! It seems that surgeons cannot get their head around women who don't want any! So at least now I am symmetrical - I have never regretted my first decision or my latest decision - it just felt right for me. I wish you all the best with your decision and in your current treatment. xx
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21-12-2017
09:53
Hi Sammy As you wrote this quite a while ago, hopefully somebody has got back to you! I also had high grade DCIS but went for a mastectomy as I had BC on the other side 10 years ago so now I match on both sides! Hopefully, they can remove what they need to and you will have your clear margins xx
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13-12-2017
09:06
Hi Annie, Sorry I have only just seen your post! To be honest, I can't remember exactly how long which is a bit annoying for me too as I seem to be in quite a lot of pain/discomfort with my latest mastectomy which I had 4 weeks ago! I think what I was saying is that it is quite common to feel aches and pains quite a long time after - even now, 10 years after I can feel achey in my chest area and sometimes under my arm - as I said I had axillary node clearance too and a lot of radiotherapy as my cancer was stage IIIa (in 4 lymph nodes). If you are worried about it then you really need to speak to your breast care nurse or your surgeon - perhaps you need to get them to look at it and make sure it is all healing okay. I have been taken off Letrozole now as I am 10 years post first surgery and my new breast cancer is hormone negative! I hope you have a good Christmas too - take care of yourself and remember that you have been through a very big operation as well as had to cope with a cancer diagnosis so you are bound to feel vulnerable and tired. xxx
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13-12-2017
08:57
Hi Shocked, 4 weeks today I was feeling just like you! Had just had my isotope injection and was first on the list the next day! Everything went to plan and I came home the same day. I still can't believe that asI had a mx in 2007 too and was in hospital for 5 nights with that one. I felt very good when I got home apart from a bit of sickness due to the anaesthetic. You will hopefully be fine and like Sammy says, if you are not and you are unwell in any way, they will keep you in. Take care and good luck tomorrow, Polly x
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10-12-2017
07:59
Hello Angela (justme41) and Dizzybee, I'm so sorry I have not been back here but I got confused about where I had posted! Thanks so much for your support - I really appreciate it especially with what is going on for you too! I had my mastectomy and SNLB as planned - they found a micromet in my lymph node but no invasive cancer as yet - they are going to have another go to try and find it! I had 30mm of DCIS too which is er and pr neg - so different from my first BC on the other side! As it stands, my surgeon is saying that I have had all the treatment - I keep thinking that surely they need to find and test the invasive cancer first - I must admit that I have not really hit it off with my surgeon and do not really feel much confidence in her - she plays everything down whereas I want the belt and braces approach especially as this is my second time! I hope you have all had a good weekend and wish you the best with your treatment xxx
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10-12-2017
05:05
Thank you Kay and Moijan! I have just had my results - they found 30mm of DCIS but cannot find my primary! The DCIS is er/pr neg so Letrozole would not have stopped it anyway! Good luck with your treatments and thanks again for your time, xxx
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10-12-2017
04:55
Hello Delly thanks so much for replying! I have just had my results on Friday - DCIS of 30mm but no invasive cancer found! DCIS is er/pr negative so different from my BC on the other side! As they cannot find the invasive cancer they can't test it for her2. They are now going to try and find the invasive again by doing different slices of the sample! My Letrozole has been stopped as my surgeon said I don't need as I have had 2 mastectomies although I always thought it was to stop secondaries too! She still says my main threat is my first primary though! Have you had BC more than once yourself? Thanks very much for your support, Polly xxxx
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02-12-2017
08:39
Hi Anne What a terrible experience you've had. I had a mastectomy 2 weeks ago but have only a problem with a seroma. I really hope that things settle down for you and things start to feel better. I must say that I can't believe how quickly you were back at work! I hope you are taking it as easy as you can and looking after yourself. A big infection plus the heavy antibiotics you have been on can take it out of you and could make you feel tired and even affect your mood. My first mastectomy was 10 years ago and it took months before things settled down completely. I must say that even now the area is sensitive and can be achey (although I also had axillary node clearance). However I can comfortably wear a prosthesis! Mind you, now that I've had 2 mastectomies I am going without which is so much more comfortable! !! Take care of yourself and I hope someone with more experience of your issues can offer more support. Pollym xx
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02-12-2017
08:27
Hi soi soi, thanks for your reply! I hope your side effects aren't too bad and get better as time goes on. I've been on both tamoxifen and letrozole so if I start exomestane it will be my 3rd one! Pollym x
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27-11-2017
06:22
1 Hug
HI Nicky Thanks for your reply - I think I remember you when I was first on the forum in 2007?! I have not had too many side effects with Letrozole although struggled with loss of libido and dryness etc! My BP is on the low side. I suppose I will just have to see how it goes with Exestamane if indeed that is what they put me on. Polly xx
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23-11-2017
01:54
Just an update to my previous post - My staging scans showed no spread to lungs, liver or bones. However, following mastectomy and SNB last week for high grade DCIS micromets found in my lymph nodes. This means I have managed to grow another invasive cancer whilst on Letrozole on the other side! Surgeon said to stop taking it as obviously not working for me. This is despite them not knowing whether the new cancer is ER+ or not! She reckons they may not even find my invasive cancer but as 80% of cancers are ER+ they will treat the new one as such if they don't find it and switch me to new medication - Exomestane - has anybody else been moved to this? I just wondered how it compared to Letrozole? I am sorry to barge in the secondaries thread but you ladies here have better experience of switching hormone meds when they arent working than the ladies in the primary thread! Take care everyone xxx
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23-11-2017
01:43
Hi all, I had my mastectomy and sentinel node biopsy last Thursday. Unfortunately, they have found micromets in one of my lymph nodes so they removed that and one other. Apparently, they no longer do routine node clearance and I'm not sure what I feel about that! Obviously this now means I had invasive breast cancer as well as DCIS although the surgeon reckons they may never find it as she seems confident it will be small! I hope they do if only because then they can then test it to see if it is hormone positive, her2 positive etc. which will help with treatment! Otherwise the surgeon says that as 80% of DCIS is hornone positive they will treat it as this! As I was taking Letrozole at the time for my BC 10 years ago this was obviously not working if I have a new BC so that raises other questions! Has anybody been switched from Letrozole to Exemestane which is the drug she has mentioned for me. Thanks xxx
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22-11-2017
11:51
Hi cattykins and scarletpoppy, I have not been through exactly what you are going through but have just been diagnosed with another breast cancer on my other side after 10 years. The scariest thing though was the staging scans they did before surgery for the new breast cancer. These were a pet bone scan and ct scans of liver and lungs - this was to check that my first cancer had not also spread. Fortunately mine were ultimately clear. It is completely horrendous waiting for results and your imagaination goes into over drive. I feel so sorry that you are both in the position of waiting to hear about results of scans - they really need to be done but it is just the waiting that is the worst. I am keepng my fingers crossed for you that your scans are clear. poppyscarlet - I am really sorry to hear that you have to go through chemo again - I really wish you the best with it Take care xxx
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22-11-2017
11:44
1 Hug
Hi all, I wonder if anyone has any similar experiences or wisdom to impart?! I had my first BC in 2007, It was 13mm grade 2 her2+, er+, pr+ with 4/10 positive lymph nodes. I had left mastectomy, axillary node clearance, chemo, rads, herceptin and have been treated with hormone therapy for the last 10 years. I was on Tamoxifen for over 7 years then had to switch due to thickened endometrium to Letrozole. Last month found lump on other side which surgeon not initially concerned about until she looked at my mammogram results from May - I should have been recalled but wasnt - apparently a human error! Long and short of it is that a biopsy found I had DCIS grade 3. Staging scans were done to make sure that I did not also have metastases of my original 2007 cancer - thankfully they were clear! I had my mastectomy and sentinel node biopsy last Thursday. Unfortunately, they have found micromets in one of my lymph nodes so they removed that and one other. Apparently, they no longer do routine node clearance and I'm not sure what I feel about that! Obviously this now means I had invasive breast cancer as well as DCIS although the surgeon reckons they may never find it as she seems confident it will be small! I hope they do if only because then they can then test it to see if it is hormone positive, her2 positive etc. which will help with treatment! Otherwise the surgeon says that as 80% of DCIS is hornone positive they will treat it as this! As I was taking Letrozole at the time for my BC 10 years ago this was obviously not working if I have a new BC so that raises other questions! Sorry for the long post but feel better putting it all down on paper! Take care all xxx
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