Breast Cancer Now Forum

Thanks Flower, had a really bad day today, tried to have a normal day but instead just feel overwhelmed with this sense of dread...this cancer must have been lurking for quite some time, I could have it everywhere by now, and I just don´t know how to feel safe in myself again. Does this sound mad? How do we ever feel normal again? I feel so out of the normal world now, it just does not feel the same, and I do not want to be in the cancer world...... ... View more

My blood is boiling. Who the hell do they think they are saying things like that to you? They are not God...look at that lad in intensive care recently written off by several doctors but his parents refused to give up on him and here he is alive and well.......... There are SO many things in life that are not explained by conventional medicine which is reductionist and mechanistic.........we are all a lot more than machines. Even conventional doctors belive in the placebo effect so why then do they persist in giving a negative placebo - its a load of rubbish, and just means people with cancer end up feeling a lot more scared than they need to.......boy I did not realise how mad I am about this but I am, for you and for everyone who has been burdened with this knowledge - YOU BEAT THEM already........and proved them wrong, keep on doing it. ... View more

No - this is my fear also that recon will cease to be a priority in times of austerity......don´t cancel but it gives you space to check it is right for you. ... View more

Yes I read that even if you are exhausted with the awful cancer fatigue exercise has been found to be nothing but positive and surprisingly to help reduce fatigue!. I am a Zumba addict and still do it now...two planned at least pre op, if not 3.......plus I have dogs to walk! I also plan to take mega painkillers so I can be sure to do the exercises to avoid lymphoedema as that scares the hell out of me I am trying not to blame myself for not noticing, but mine came on really fast, from being normal (for me) kind of heavy feeling and a little lumpy to this huge mass in literally weeks........ Thank you for your support........xx ... View more

Hi Lemongrove I so know how you feel! Today was a good day as I was treated with kindness and empathy by medical staff, last week was just the opposite - don´t they realise we feel like they have our lives in their hands????? I found this site and it is really helpful I think.......I hope it helps you http://www.nccn.com/files/cancer-guidelines/breast/index.html#/100/zoomed ... View more

OK - I think you are talking about lymph nodes and they are supposed to swell up if you get an infection! That means they are working....insist on answers until YOU are satisfied....and try not to worry ... View more

Thank you Flower. I do feel better knowing what it is - the weeks of not knowing but being told I definitely had cancer with significant tumoration were horrendous, a long month this April......amazing to think I was BIRADS2 and told it was benign from my mammogram just 5 weeks ago! ILC certainly does lurk and hide and so it is nearly always more advanced when found. I feel better hearing from so many people on here with it with better odds than I was given (and which I have already discounted as incorrect) yet also being Stage 3...... The issue of chemo is a funny one...but then every cancer is unique.......I would need to have very significant statistical improvement to go through that. What worries me most about the surgery is my LNC and how it is afterwards.......going by the biopsies my breast area will not have much pain, but underarm, wow, a horrible sicky type of pain. How long does it take to feel ok and be able to go out etc again? I don´t want to lose my physical fitness by lazing around..... ... View more

Update - was back at the hospital today as oncologists now involved - I am Stage 3 locally advanced Invasive Lobular Cancer with cancer in lymph nodes (looking at this site I make myself 3A). Mastectomy and LNC now booked for 2nd May...... ... View more

Wow its a minefield isn´t it! What does scare me about the other breast is that mammogram did not find my current tumours (and they are not small), it grew exceptionally fast, neither did two ultra sounds done by someone with a very good reputation for accuracy find it, only an MRI with contrast did. ILC is renowned for being difficult to detect so I don´t want to live with fear for ever......and I did not feel any lumps until my lymph nodes were inflamed, I just have a large tough dimpled very hard area. So how can I ever be certain I will not get it there when the most likely place it will spread to is the other breast? Interesting you say it spreads by blood as my biopsy (of last week) says there is no vascular infiltration from the breast tissue sampled but metastasis in axial node which was huge.......so maybe this is good news? I have had a huge rash in the base of my cleavage today which has gone across to my left breast - is this a sign of anything as its not normal for me? ... View more

Thank you Bethy, it all helps...... Do you mind if I ask what treatment you had and how old you are? ... View more

Blunt yes most definitely - there are no breast cancer nurses, I even had to sign the consent form there and then! I have to say I was not really expecting anything else, but when I asked about my other breast I was told it would be monitored by mammogram. But my current cancer was not found by that so it does not inspire me with confidence!! I do not know if I am Stage 2B for sure it may be higher but grade 3 and 90% is the element that worries me a lot more especially as I do not have an actual surgery date yet and I have already been waiting 2 months since symptoms first appeared when there was no lymph involvement at all. Do I count as early stage then as it seems pretty advanced now and is in other tissues in my breast as well as nodes according to the numerous biopsies that were done? ... View more

Thank you all for your lovely replies, I am beginning to realise that I think the doctor gave me worst case scenarios with his statistics, and I have now made my own plan, starting with his which is surgery ASAP. As ILC prefers breast tissue I am really wondering if I should have both removed at the same time to cut my risk further - what do you think? This is so hard to pick up apparently and my appearance went from nothing to enormous in no time at all.....I don´t think I want to live in fear of it appearing in the other breast..... After surgery I am going to get at least two opinions from oncologists about ongoing treatment, if any. Radiotherapy, chemo and hormone were mentioned yesterday but I am not necessarily going to agree to all those, depends on how many nodes are affected. I shake inside at the thought of the surgery and looking at myself afterwards but I am focusing on getting the cancer out as it is very large area - almost half the breast and very uncomfortable. ... View more

Thanks Flower - based on your research would you choose to have the other breast removed as well in my shoes? ... View more

Thank you - I hope you are right. I have not met the oncologist yet! Only the breast gynae doc who deals with all the BC patients and does the actual surgery. He presents me to the cancer team apparently (this is Spain so its a bit different here) and said there is zero chance the treatment plan for me will be anything other than MX first and that will be ASAP as soon as the pre-op tests are done. Anticipated to be no later than 10 May. He did say based on biopsy reports he thinks I am Stage IIB Grade 3. I researched the info re my kind of cancer and all reputable sites seem to say the same thing Its normally more advanced when diagnosed as it is hard to diagnose and that it generally prefers breast tissue, then ovaries. My personal plan now is to get the surgery done asap, find out the definite results from those pathology reports and then look for an oncologist in a larger hospital and get at least two opinions on further treatment. There is just one attached to my local hospital and he is only here once a week - I will meet him to find out his thoughts then get a second opinion and decide if I will push for transfer to a Teaching Hospital where it has all the departments I will need in one place (other conditions complicate cancer treatment for me). ... View more

Back again - I have looked into this in various places and it seems clear that ILC does prefer breast tissue to other tissue so it seems logical to my little brain that by removing the other breast as well I increase my chances. I was told I have PASH in my other breast from MRI and that increases the odds of getting BC four fold, now with the ILC type it seems my odds are doubled from that........ What do those of you with more experience think as I am thinking of really pushing the surgeon to do both at the same time, even though the idea turns my stomach? ... View more

Hi Jeannie Thank you, nothing more to say as its late and its been a hell of a day. I did speak to the helpline and they told me they thought I had been given worse case scenario Take care ... View more

THANK YOU everyone for your support. Went to hospital today, kept waiting one hour..... This is what they told me verbatim Invasive lobular cancer Infiltration and metastasis in axila Aggressive as Ki-67 is 90% (this website shows high as anything over 20%) Chances of survival for 5 years - 50-50 Oestrogen positive but also progesterone positive I read up on it and it seems it is far more likely to appear in the other breast and other areas of the body than other breast cancers ... View more

Thank you Ninja - my body temp used to be 36.5 but now its 35C and I live in a hot country! I know metabolism works better if you have a more average body temperature and mine just seems to be going downwards. I am hypothyroid but that was checked recently and all is within normal ranges......... I am currently mourning everything, NOTHING is the same..... and I don´t even feel like the same person ... View more