Breast Cancer Now Forum

Thanks for the information, I'm having herceptin next week so will ask about the vaccine.  Totally agree with you it's bad enough having cancer and now we have to deal with the virus as well, I'm totally fed up with it all. I'm terrified of having to go into hospital every 3 weeks for Herceptin it's the last place you want to be at the moment, wish they would let me do it myself as it's subcut just a 5min injection in the leg, I've asked but they won't let me, I know I could do it.  Thanks again for replying. Xxx   ... View more

Hi,  I have SBC on liver and lungs being kept stable on Herceptin for the past 8 years.   I used to suffer with really bad joint pain but have been taking high dose turmeric or curcumin spice it's a natural anti inflammatory apparently as good as ibuprofen! I certainly have noticed a difference but as with all these things it works for some and not for others.  Also best check with oncologist before taking anything. Hope this helps xxx ... View more

Hello Eveyone,   To bring you up to date I applied for PIP last year after 7 months I finally had an appointment with an assessor who was coming around to the house, the first appointment was cancelled and then another appointment was made and he turned up. The assessment went okish, however he did like to relay his personal stories about his wife who survived hodkings lymphoma and his mother in law who also had breast cancer I didn't really feel this was necessary to mention in my assessment and I think he was trying to put me off claiming a sort of ' if they can survive you can without benefit' it really was annoying and some of the questions were equally upsetting. We got through it and then waited an eternity for a reply the first I knew was a payment was made into my account I was awarded the lowest rate motabillity 22.60 a week, I have appealed or sent a letter called a 'mandatory reconsideration letter' which is the first stage of the appea process, I have had no reply or confirmation that they have received it which is why I am glad I sent it recoreded delivery and have a copy just in case. Has anyone else had to go through this ridiculous process and if so what was the outcome of the reconsideration letter? any advice is greatfully received. Many thanks sarah xxx     UPDATE: DWP have looked again at my PIP after sending Mandatory Reconsideration Letter took them an age to reply nearly 14 weeks! Now gone to appeal which to be quite honest with you is just more of the same questions as before I think this process is just a delaying tactic to see if your strong enough to carry it through or worse still wether your well enough!!! This has been going on since last July. I have now put in an appeal but have decided just to write to my local MP as I can't wait about for them to get back to me about the appeal, I think they are banking on me not being around by the time they have made a decision. I am still on the pittance of £22 per week. I found out last week that a heroin addict gets full PIP and free Methadone, free money and drugs!!! so it seems I am on the lower scale than an addict. Sorry for the rant ladies but I have a terrible cough which is making me worry like mad, seeing doctor on Tuesday.     ... View more

Hi eveyone,   Thank you for all your advice and help.   After all that they cancelled on me, my appointment was for yesterday (monday the 12th) they phoned on Friday afternoon to inform me the assessor was ill. So after all that fretting it was a no show after all. I've been waiting for this since August!!!! Its ridiculous.   The person who phoned me from PIP told me that they didn't know when they could rearrange the visit but it would probably be early December. I told them that I am due to have a 2nd mastectomy (to hopefully help with migraines, neck pain and back pain from the weight of the remaining breast no recon), on the 27th of this month which would make it very hard for them to assess me correctly being that I will be in recovery from this operation. The PIP representative asked "how long will you be in hospital? to which I said it was a day case (no beds at my hospital) so have to come home that day with drains!! honestly I am at my wits end.   Apologies for the rant but this is totally disgusting. ... View more

Bonariensis thank you for the link I shall be looking further into this if I am turned down. x ... View more

Thanks PinziA you have really helped me I was considering cancelling the application as I feel so stressed about it. What a result I will defo write to MP if they turn me down after this home visit. I'm not going to be terrified and already feel mad that so many of us have to go through this palava when we should be making the most of every moment. xxx ... View more

Oh no thats so awful Mermaid, living with this is bad enough let alone the financial implications of it. I am so so sorry the system has let you down and am now feeling a bit fearful of the home visit. I was given DLA for 3 years then PIP came along and instead of getting my GP to fill in a DS1500 form I thought I'd better go through the normal channels as Im still here thankfully although I agree with you DWP probably don't like the fact we are still here and thought I would be dead by now. I can do all the same things as yourself but I do get extreme fatigue and dizzy spells that have led to me having had 6 falls this year alone, leaving me thankfully only bruised badly but I don't feel safe going out by myself and need a companion just incase I do fall. I also get breathless and suffer with a load of other side effects and problems. My partner helps me in and out of the shower and I have a perching stall in the kitchen to help when I am cooking. We shouldn't have to jump through hoops to get this benefit, we are ill with secondary breast cancer this begs belief!! Maybe you should re-apply or appeal the decision I have heard that others are getting it after appealing. Thanks for your help Love xx ... View more

Hi ladies, thank you so much for advising I think I will try my GP for the DS1500 again, it''s such a pain to be burdened with this on top of everything else isn't it? We just don't need it. Hugs to you all Xxx  ... View more

Hi all, Ive just received a letter from DWP informing me that my DLA is due to stop giving me 2 weeks to put in a claim for PIP or by the 1st Dec. I've been on this benefit for nearly 7 years as I am living with secondary breast cancer and was awarded it by my gp signing the DS1500 form, so far he has signed this form twice, initially it had spread onto both lungs and further down the line it was found on my liver. I am on Herceptin and Arimidex indefinately or until they stop working and whilst I feel well today I get very bad days where I'm stuck to the sofa with lots of joint pain, extreme fatigue, as well as very bad migraines I have as many as 4 a week. As of my latest scan the lungs are clear which is amazing and the liver is stable, however my onc has explained that whilst my current dx is good my secondary cancer will always be there its just that the cells are so tiny the ct scan can't pick them up at the moment.  She has told me we will deal with any changes as and when they come along. This letter has really shaken me up I don't know what to do? Do I go back to GP or Onc and get the to refill another DS1500 form in? Or do I try and apply for PIP through the normal route, I think if I do it this way they will stop my benefit. The benefit was supposed to end next April so this has come as a shock. Any advice ladies? ... View more

Hello All,   I really pray my post brings hope to those that need to hear something positive and uplifiting.   Dx 2011 with both primary and secondary, multiple mets to both lungs (apparently I lit up like a xmas tree on the scans too many to count) and in 2014 a couple of spots spread to liver. Have done the usual chemo, mastectomy, rads then Tamoxifen, presently on  Anastrozole  (Armidex) and continued Herceptin which I've been on for the past 6 years. I've also taken a load of supplements, been clean and green ie: juicing and tried a variety of holistic treatments including spiritual healing. I beleive in throwing everything you've got at this thing including both conventional and alternative or complimentary.   Last Friday I went in for the results of my latest CT scan, the last one I actually had with dye contrast (they managed to get a needle in) so I was secretly dreading the outcome (you can see more with the contrast) basically I've got the all clear! Yep its happened I've got the all clear, the cancer on both lungs and liver has disappeared or as the Onc's Reg explained its so tiny we can't detect it on the CT scan. This is the best news ever........I am such a lucky, lucky, lucky girl. I knew about the lungs from the start but only found out by accident about the liver when I read a scan report that mentioned lesions on my liver!!! So for them to declare no sign of disease in both lungs and liver is mind blowing.    Whilst walking on air out of the oncology department I waited outside for the other half to pick me up, another lady was waiting and we got chatting, she told me about her Dx in her 40's (like me) over 20 years ago!!! with breast cancer, and that it had only just decided to show itself again and now she has all these new options and drugs to try out, she told me to stay positive and live my life, she was a breath of fresh air.   I hope my story inspires and brings hope to anyone that needs it. Its incredibly hard especially in the beginning when your first Dx to get to grips with whats happening to you. Letting it all out, the frustration, anger, fear its the best way forward and in time this subsides and is replaced with a new unique perspective, this is when you have to go for it, do whatever it is that you believe in and above all else live for the moment. Sending you all lots of love and light xxxxxxx ... View more

I was dx with both primary and secondary lung mets at same time 6 years ago, over the course of 3 years the lung mets reduced and finally disappeared, I am on continuous herceptin, was on tamoxifen, now zoladex. The fear never really leaves you but being resilient strong women you learn to live with your new normal and gradually just like the the lung mets disappearing you adjust and get on with life without thinking about it everyday. I still have 3 monthly ct scans but won't allow myself to get worried about it until the day of results, othetwise you cant enjoy life or live in the moment. So far so good on the lung mets front, although I have small lesion on liver which is reducing. I promise you with time you will be able to move on in your new normal. Xxxxx ... View more