Breast Cancer Care Forum

Calcium was ok this week so I've had zometa and the rad zap. Went to a gig yesterday with my husband playing, back where we used to live. All a bit emotional telling people, but I'm glad I have. I've got to cancel the holiday as we can't afford to lose the humongous amount we have to pay on 20th to complete booking. The insurance wouldn't actually be enough to cover us, I was going to increase it when nearer the date to pay. Unfortunately that is now and I can't get a fit for travel yet until after the masectomy on 25th. Stay strong all of you. ... View more

Had a bit of a scare on Wednesday. I was offered chemo bus on Friday for my zometa bone infusion if I could get bloods done day or so before. Normally I get bloods at the hospital, chill for hour or so for lunch then have infusion. Chemo bus is half hour nearer so thought great. Had bloods done at 8:30 Wednesday. Got a call from hospital at 7pm to say potassium was High so they'd like to see me. Said OK, I'll go in on Thursday. They said no, we want to see you now. They asked how far away we were, I said 40mins and they said in that case call 999.😲😲😲. Called 999 said maybe an hour, so decided to go by car. Got ready to go, then son appeared and said did we know there was an ambulance outside. So that took less than 10mins. They did ecg as hospital had said my potassium was 7.5. The normal potassium level in the blood is 3.5-5.0, between 5.1-6.0 mild, 6.1-7.0 moderate, above 7 severe hyperkalemia, which can give heart attack I think. Tests were all OK but as my normally very good blood pressure was super sky high, I opted to go in the ambulance. As my back pain could have npbeen masking chest pain, I think that's why they diverted off their ordinary call. Anyway, they did immediate test at a and e and potassium ok. Apparently if blood test left too long, it can result in High potassium. But get this, doc said it can happen 4/5 times a night and maybe 1/50 is a true problem. Something wrong with the processes there. All those wasted NHS services must because blood test was left standing too long. Won't make that mistake again, I'm going back to normal blood test at hospital before infusion. Turned out my calcium was too low to have the infusion. zometa lowers calcium so they've given me calcium tablets and we're going to try again on Thursday. Then my radio is on Friday. Annoyingly clashing with a once a month really enjoyable club I go to. Oh well. Psychologically, I'm feeling a bit better. Sleeping OK, fewer tearful moments, although the slightest thing can still throw me. DH tolld my son, so I feel better that I'm not having to hide my feelings. Still can't get back to feeling I'm going to beat the average of 5 years, which is how I felt before this all blew up again. Doesn't help that DH's sister has been given terminal status for myeloma. It's all a bit too close to home for my liking. She's younger than me. It feels good to blurt out my feelings. DH is wonderful and son is giving even more hugs than normal, and that was a lot even before he knew I had cancer. Still haven't completely cancelled holiday . I know I've got to., told insurance, but not the holiday company. Thanks for being there. Hope you're all doing well. Have you got back to pre cancer fitness and capabilities? ... View more

Ha, I see I can't be that explicit with my language. Bleep was💩! ... View more

As ever, thanks for the info ladies. Bit of a **bleep** day really, the breast care's doctor saying it hasn't spread anymore, only referred to not spreading to organs. However, there are some small spots in my sacrum and pelvis and a slight increase in the original mets around bra strap level. So the rads idea wasn't for the old area but for the lower area as she doesn't want the cancer to damage nerves serving the 'undercarriage' as she called it. I'll only get one zap so not onerous. My mastectomy will probably be on 25th Nov. They rang me with that info before we even got home. They've certainly been on the boil since deciding it was cancer again. ... View more

Loola and others that have had potential bone mets, how did they confirm it was a fracture rather than cancer? What scan do they use or is it by biopsy? ... View more

Hi, I had scan on Sunday to check if any more spread. Review yesterday says no, thankfully. You can imagine how worried I've been. So had choice of mastectomy or lumpectomy plus radio. They said slightly better outcome long term with mastectomy so that's the way we're going. I don't mind. I just want to get rid of it all. They advised not to have reconstruction. I'm 61 and not precious about my figure. OH agrees and is ok with it. My back is in acute pain atm. I think it's stress and hoping it will ease up now. But we're seeing oncologist tomorrow to discuss rads on back before the op. So if there's any advice you girls can give re mastectomy or rads i'd be grateful. I didn't have rads first time around. Loved the neoprene pants. Thank you. You make me smile. ... View more

If you're anywhere near Bury St Edmunds contact the Original Alternative Official. They are well respected and will give samples. Alternatively contact them. They may send samples. They can't give advice as it's illegal. I'm using their paste and balm. They have stronger products than high street. ... View more

What the hell made you call us this appalling name. I am not dead, DO NOT LABEL ME WITH THIS NAME. You can't understand how upsetting it is. ... View more

Thanks for the info ladies. The pants made me laugh. Xx ... View more

Well, I've come to terms with the fact that I'm probably going to have to cancel our Maldives holiday in January. I couldn't sleep worrying about it so at 5am I called the oncology nurse answerphone and asked if I could pay to get a quick scan. I was called at about 9:45 to let me know she had spoken to the breastcare team and they were going to chase up when the ct scan will be. Called again at 10:30 by bct. So again,hurrah the NHS. My scan is Sunday week, multi discipline meeting the following Wednesday, so they've booked me an apt that wed pm. Again, hurrah. I asked how long the healing process takes after masectomy or lumpectomy. She said about the same and thought I might still be able to go on holiday. Trouble is, I know there will be alot of climbing vertical step ladders after snorkelling, which is tricky with my one good arm anyway. As that one Good arm is also on the side of my cancer I think that is asking for trouble so soon after the op. Those of you that had mastecomy, how long did it take you to heal, so you could pull on that side's arm? ... View more

My oncologist has just phoned @7pm, so hurrah the NHS. After the ct scan, she's hoping everything else will still be stable. In which case, I will be back under the knife for further lumpectomy or mastectomy and maybe rads. They didn't do rads before as I think they were saving that for further down the line with my bone mets as it can help to stop the pain. She thought it most likely that this reoccurence is the original positive margins rearing up again. Therefore they are going to try a different med as well. Anyone know what they use instead of letrasole? ... View more

Thanks Jill. I've made my comments know. ... View more

I have bone mets and currently dealing with the news that my bc has reoccured in under 2yrs. The unsurvivors....what an utterly awful name. That implies I haven't survived. I am surviving, I am a battling survivor, please don't label me as dead already. ... View more

Thank you. I was looking around for the message board of inspiring stories. Can't seem to find it now. I think this forum is good as I can cry my heart out to you. ❤❤❤ why are these hearts black! That's all I need. Not sure I like this new set up. At some point it was referring to us ladies with mets as unsurvivors. Ffs what were they thinking of. On a high note, I've been on loads of holidays I would never have done without the cancer raising it's head. Just have to think of the silver linings. ... View more

I don't know how many of you still look at this but I'm having such a 💩 time. At my last scan review, although the onc thought everything was ok I could feel a lump near the site of my lumpectomy. Biopsy showed it to be cancer so I'm waiting for a new ct scan and review date. I know I should try to be optimistic but it's just not happening. I just keep dissolving into floods of tears. I'm just hoping writing my feelings might help to get the helpless feeling out of my system. I think you're all on FB aren't you? I can't do that as my husband also sees that. He is my rock, I need that so I don't want to upset him. He would totally listen to me and be supportive but I need a different sort of support from him. I can't explain it. ... View more

Oh Jencat, so sorry to hear about your dad. Sending hugs 🤗🤗Xx I know I haven't been on for a while, I find denial is my best way of dealing with this crap. I'm still having reviews every 4 months because of the bone mets I think. But last ct scan was still stable so ticking along. Generally I don't get too much bone mets pain because of the shed load of meds I take for my paralysed arm pain. I just wanted to ask if any if you have sore feeling around your scar tissue? I didn't have rads but occassionally it feels really sore under my arm where my incision for lumpectomy was made and presumably where my lymph were taken. It doesn't look sore, nor sore to touch really. I have had it before, occasionally after my Zometa shot. I had a ballistic row with a relative a couple of days ago and since then this sore feeling has flared up. Can stress affect lymph? ... View more

PS why isn't this thread pinned? Or is there a pinned thread. ... View more

We're doing a two week cruise in caribbean. Best I found was Boots by phone not online. I have bone mets discovered pretty soon after starting treatment, husband has various typical ailments but not cancer or anything awful. They asked way more questions so I thought they'd turn us down. Other insurers were £1500, £1900 and others wouldn't insure us at all. Boots is £488 , so I asked about annual and get this, it was cheaper £400 for annual worldwide couple plus cruise add on. Excellent! ... View more

Ooh, where's the picture you're talking about? ... View more