Thank you all for you responses.
Mim - I am sorry you are going through the mill at the moment. When I found my cancer my breast around the nipple area was inverted. Lobular often goes undetected for some time as it doesn't present itself as a lump and mine was 6.7 c.m. when diagnosed but fortunately hadn't spread.
I can't comment on your symptoms as mine were different. I have read that some think there is a link between thyroid problems and breast cancer but as with all these things your symptoms could be something else unrelated to breast cancer. Hope that all goes well at your appointment on Wednesday.
... View more
Thank you for your kind words of support. When you think it is all over there is always something to worry about, particularly in these early days following the end of treatment.
I managed to get an emergency appointment to see my doctor and it appears that I have a lump on my thyroid gland. She thinks it is a side effect of the treament but has contacted my oncologist as it needs to be checked out. I've read on the internet that many women have problems with their thyroid either pre or post breast cancer. It appears that most lumps are benign but there are always some that are not..... I am choosing to stay positive until I get the results of the tests I am likely to have in the near future.
Are there any other women who have experienced similar thyroid problems post treatment?
... View more
I was diagnosed in March 2008 with invasive lobular cancer with no node involvement. Finished treatment in December 2008 - mx, chemo, rads. On tamoxifen for next 5 years.
I have now found a lump at the front of my neck. It is situated on the right hand side at the bottom just above the v in my collarbone. It is largish, is tender to touch and moves when I swallow. I have no other symptoms and feel well generally.
I am unable to see my gp until next week but of course I am terrified this is something sinister and I wondered if any other ladies had experienced anything similar.
Thanks for your help.
... View more
Thank you all for your comments. Your responses have given me a lot to think about before making my final decision. On the one hand I believe that fate will decide my future no matter what preventative routes I go down be it further surgery or changes to lifestyle. On the other I'm not sure if I can cope with the anxiety of just keeping my fingers crossed but maybe the fear will fade over time.
I also emailed the Dr Susan Love Research website to ask if there was evidence that this would reduce the risk of cancer developing in the other breast and the response, which was as follows, might be of interest to others: "Having a preventative mastectomy will reduce the risk of developing cancer in the other breast however depending on the age of the woman and the stage of the original cancer the odds of getting cancer in the other breast are fairly low and the chances of the other cancer spreading higher. Also taking an anti estrogen medication cuts the risk in half so getting cancer in the other breast ends up being fairly low (0-7%). But it is a personal decision and removing the anxiety and worry counts for many women"
I know its a generalisation but according to the above the risks with treatment appear to be a lot lower than I've read elsewhere and as the fear of recurrence will remain no matter what decision I make perhaps a prevenative mastectomy is a bit drastic. I'm sure my indecision will continue for some time yet as I'm still undergoing treatment and I also need to seek the opinion of a surgeon.
Once again thanks for your support and best wishes for the future.
... View more
I have not posted a thread previously but have used the forums extensively as a support since dx and to respond to others where I've felt my experiences might have helped. So thanks to all those who take the time post. I now have a dilemma which I would appreciate some help in working through which I have not found help with in existing threads.
A brief history. Age 47. Dx and mx March 2008. Diagnosis - invasive lobular carcinoma. Tumour 6.7 cm. 9 nodes removed - no involvement. Last chemo nxt Tuesday followed by 15 rads and 5 yrs tamoxifen.
I'm now at a stage where I am thinking about my future - living with breast cancer -and have been giving thought to having a preventative mastectomy on my non affected breast with the hope that it might reduce the risk of developing cancer in that breast in the future. This is largely because of the research I have read that shows that there is an increased risk of this ocurring for those diagnosed with lobular cancer and because of posts I have read where women have said they have been told by their oncologists that its a when not if scenario for those with this type of cancer and of course in the main to give me peace of mind.
As this is a big decision bearing in mind the trauma my body has already gone through I would like to make an evidence based decision as far as possible rather than making the decision purely to achieve peace of mind. I have researched through the internet and found only a little evidence that shows a preventative mastectomy reduces the risk in these circumstances.
I also have some concerns about going down this route. Firstly, my oncologist looked at me as though I was mad when I mentioned this to him and suggested that early diagnosis through regular check ups was the way forward although he was open to discussion in the future. I am being treated at the Barts & London and question why an experienced, well regarded oncologist would not be immediately supportive. My other concern is that I have also read that cancer can develop in those who have undergone a preventative mastectomy. If this is the case it will develop in the chest wall, skin or lymph nodes and my thinking is that this will increase the risk of secondaries. I have seen no evidence to support this but wonder if perhaps I am best to leave well alone if this is a possibility.
Of course this is ultimately my decision and I am well aware that regardless of my relatively good prognosis and regardless of any preventative routes I might choose to go down that no one is immune from recurrence however I would appreciate others thoughts on this and to hear of any research that supports preventative surgery in these circumstances.
Thanking you in anticipation for your support and wishing you all well for the future.
... View more
I can sympathise with you as I was told CMF would be a breeze compared to epi. I don't have any answsers either but my recent experiences might provide some help. I suffered with the first two epi but once my anti sickness meds were sorted - I was given apprepitant - the last two were easier to cope with. Following my first cycle of CMF, which was less harsh in terms of the usual side effects, I had a melt down as I felt I could not cope with more chemo as although the side effects were not as bad they lasted the whole two weeks which I found very difficult. I spoke to my oncologist about giving up (well, I cracked up and sobbed all over the poor man). He saw me on the day I called and was incredibly supportive and said I could give up and move on to radiotherapy or that he could increase the gap between the two doses to see if that helped. The day after I was admitted to hospital with neutrapenic sepsis and chest infecton where I stayed for 7 days which I think was the actual cause of the melt down. However, once I was treated for my infection I felt I could go on as I had some control over the treatment and also knew that I would worry about the possible consequences of giving up. I have been told the chemo would add a 5% increase to my outlook. For my second cycle they reduced the dose by a 5th because of my infection and this has really made a difference. The side effects have been greatly reduced (almost non existent) and I am finding it much easier to cope and can finally see a light at the end of the tunnel. I had 1st dose of the 3rd cycle on Tues and they have continued to keep my on the reduced dose and so far so good.
I am not sure if you have spoken to your oncologist or how approachable they are or if they have already made changes to your treatment but mine changed my anti sickness meds until they found one that worked while I was on epi and they've kept me on the same meds for cmf as they did work. I also found that being given a few different options regarding the chemo has really given me the strength to go on and see it through so maybe a chat with them will give you the strength to carry on also if that is what you really want. There are changes they can make that can make a real difference. I'm sure you'll also recieve some further support from other forum members which might help with your dilemma.
I wish you the best of luck and hope you find the help you need at this very difficult time.
... View more
I am on the same arm of the TACT 2 trial as you. As you have probably seen from the other threads everyone reacts differently to the treatment. I am due to have my third epi tomorrow. I struggled with nausea after the first two treatments and couldn't function well for 3-5 days due to nausea and for a week all in all. The hospital changed my anti sickness meds after the first treatment which helped a little and have done again for my third so fingers crossed. After the second treatment I also developed that foul taste in my mouth which was relieved with frequent brushing. Both of these side effects affected my appetite but no bad thing as I am no waif!! I did experience some tiredness but nothing too major and am fast losing my hair which I have shaved off.
I am fortunate that I have a very supportive partner, have no children to look after and do not have to work during treatment. I do feel very sorry for myself when I feel nauseous but remind myself why I am going through this and remember that there are others much worse off than me. The time does fly with the accelertated epi. I'm 3/4s of the way through this part of my treatment and only started on 22nd May. I would not have said this last week when I was feeling low with the sickness but it is doable and for the second week following the chemo I can function relatively normally so make the most of this time in between hospital visits.
I think the general rule of thumb is that you will continue to react to subsequent treatments as you did after the first although the tiredness is accumulative. Although if this is nonsense I am sure someone will put me right.
Hopefully you will continue to react well to the treatment and will not suffer from too many side effects (some are a given - hairloss). I found that the nausea has been on the same days and has ended to the hour each time so as Lilly says above if you do have off days you can usually plan support.
I wish you and your baby the best of luck.
... View more