Breast Cancer Now Forum

I don't know if you've tried Travel Insured http://www.travelinsured.co.uk/get_cover.htm# I don't have secondaries but wanted to travel to the USA just a few weeks after completing treatment last October. I was refused by many companies but was able to get cover through Travel Insured's wider acceptance policy. In fact I got a family annual policy which I found pretty amazing in the circumstances! Good luck! Linda xx ... View more

Hi Nicola, I would pack your medication in your hand luggage so that there is no risk of being without it if your checked baggage should go astray. There shouldn't be any problem with AI's and security especially if they are in packaging supplied and labeled by your pharmacy but just in case you could take a copy of your prescription with you. BCC has a page of info on airport scanners which should answer your questions - it's here: http://www.breastcancercare.org.uk/breast-cancer-breast-health/treatment-side-effects/surgery/breast-prostheses/uk-airport-body-scanners/ Hope that helps and have a lovely holiday! Linda xx ... View more

I had a bolus on my chest to treat the surface layers of the skin as prior to my mastectomy the area of skin above the tumour was red. I had clear margins after my Mx. The area where the bolus was became significantly more red following rads than the area above my collarbone which had rads without the bolus. In my case most of the redness developed in the two weeks after finishing rads so sadly you can't be sure that you've got away with it if you have minimal redness during treatment. It's now 3 months since I finished rads and there's no sign of where I had them on my collarbone but I have a lovely rectangular 'suntan' on my chest! Linda xxx ... View more

I'm going to go against the trend here and say that I like the cancer research ad. It's a powerful message and very emotive for those of us faced with this disease but I find the "it's come back" message a useful one. Above all it is a reminder that although there are treatments for cancer and many people live cancer free after treatment the reality is that there is not yet a cure and for the unlucky ones it will rear its ugly head again. If that encourages people to make a donation then I can handle a few moments of upset. I have just had my last chemo and all being well am finished with active treatment, I hope that the ad may make my friends and family stop and think before they make those remarks about my "being cured", "getting back to normal" and "putting it behind me". We all know that we can never be considered cured and have to live with the reality that it could return at any time. The more funding for research then hopefully the more cancer patients will never have to hear those three terrifying words. Linda xx ... View more

Hi Kittyhola, I'm sorry your sister and you are having to go through this scary journey, take it one step at a time and you will get there. I am 43 and was diagnosed in November last year with Grade 3, Stage 3b (spread to nodes and skin of breast), Triple neg bc. My lump at diagnosis was 15cm (!!!!) so I had chemo first, then mastectomy and axial node clearance (as at least 4 nodes involved at diagnosis), radiotherapy and then more chemo. I had my last chemo yesterday (yay!!!) and providing I recover from that without complications I am now finished with treatment and will just be having 3 monthly checkups. Chemo is scary but doable, the thing I would like to stress is that triple negative breast cancer generally responds very well to chemo (often better than other types of bc) and as there are no hormonal treatments available it can be a very important part of treatment. As an example my tumour shrank from 15cm to 4cm after 4 cycles of chemo and most of that shrinkage occured after just one dose. The chemo also cleared all signs of cancer from my lymph nodes. I stopped chemo early to have surgery as the tumour had reduced in size enough to be operable. My oncologist was undecided as to whether more chemo was neccessary after I finished rads but I was happy to have 3 more cycles in order to give myself the best possible chance for the future. Please encourage your sister to think carefully about her decision and not dismiss the benefits of chemo due to fear. If she would like to talk to me about it then please send me a pm and I'll give you my email address. Good luck to both of you on the rollercoaster ride you are now on. Linda xxx ... View more

Hi Sunshine Girl, I had Mx and ANC at the end of march. Initially I had a lot of numbness around the wound and also over an extensive area under my arm around my shoulder blade and down theback of my upper arm. The numb area has gradually grown smaller (as the nerves repaired) and i found that as it did so the skin at the edges of the numb area became extremely sensitive to touch with a strange stinging/burning sensation. That has now all settled down and I no longer have any discomfort although some areas are still numb and probably will always remain so. I had some swelling around the wound due to seroma but that settled after a few weeks. I did feel that my underarm was swollen but in fact it was just an illusion due to the altered sensation in that area. I also found that my arm stiffened if I was imobile for too long but I kept on with the exercises and no longer have any mobility issues. HTH Linda xx ... View more

I was 43 at diagnosis. Linda xx ... View more

I have a Portacath that was fitted under sedation before my first chemo. I've had no problems with it at all and wouldn't hesitate to have one again if necessary - if fact I'd beg for one rather than have to have regular vein access! Linda xx ... View more

Hi Rach, I can't offer reassurance from 10 yrs + as I'm still undergoing treatment but you might find my story helpful. My initial tumour size was 15cm (!!!!) and the treatment plan was 4 x FEC, 12 x weekly Paclitaxol followed my Mx and ANC (at least 4-5 nodes affected at diagnosis) then 3 weeks of rads. I had a scan after completeing the FEC and the tumour had reduced to just 4cm, it was marked with a clip in case it vanished completely before surgery. I then switched to the Taxol and had 5 weeks of that before having another scan where it was found that the tumour was beginning to grow again. I was given 3 options: 1. Continue with the Taxol as planned as it could still be having a positive effect away from the tumour site 2. Switch back to FEC or to another chemo drug and hope for more shrinkage (but no guarantee) 3. Stop chemo and continue with the rest of the treatment plan then consider more chemo after radiotherapy was complete. I opted for no3 as I didn't want to lose the window of opportunity for surgery given the size of my original tumour. Mx was successful with wide margins and the pathology showed that all my lymph nodes were tumour free due to the chemo. I had radiotherapy and am now part way through 3 more cycles of FEC as a precautionary measure as I didn't have a full course of chemo initially. So based on my experience I'd say that unless your mum had a scan before switching chemo there is no way to be sure that both the FEC and the Docitaxol were ineffective and even if they didn't help the initial tumour they may have cleared any distant cells. Has your mum had any scan to check for secondaries - I had MRI, bone and CT scans at diagnosis - and were any nodes affected? If they were all clear and they got clear margins with the mastectomy then there is a good chance that she is cancer free and even though the chemo may reduce the likelihood of recurrance there is still a good chance that she will have no further problems especially as she will be having herceptin to improve her odds. The scan I had when my tumour started to grow showed that there were some areas of dead tissue within the tumour so I would ask if the pathology report gives any info as to whether the chemo had any effect on the tumour cells. There may have been more benefit than is immediately apparent. If your Mum has had the tumour removed, nodes are clear (or have been cleared) and scans are clear then, regardless of what the future may hold, she has no evidence of disease (NED) which is where we would all like to be. Hold onto that and concentrate on treatments (rads, herceptin) that can help keep it that way rather than worrying about ones that may not. Remember that many people have chemo after surgery, there are probably a number of them for whom it is also ineffective but they have no way of knowing, their situation is the same as your mum's they just don't know it. It doesn't make any difference to their treatment. Good luck to your Mum (and you) with the rest of her treatment. Linda xx ... View more

Hi, I had a Mx back in march and haven't needed mastectomy bras. I've been fine with normal non wired bras - and I'm not samll busted at 38DD!. The only thing I'd say is to make sure that the bra is fairly deep between the breasts (ie the join in the middle is towards the top of the cup) rather than a plunge or cross your heart type as that will help to keep a prosthesis in place more firmly. For nightwear I'd suggest pj's rather than nightdress and make sure the top buttons down the front for easy access and to make it easier to put on when it's impossible to raise your arms over your head. Sleeve length doesn't really matter, go with whatever is comfortable. Hope that helps Linda xx ... View more

I've been allowed to go ahead in the past providing that my blood counts have been ok. Hope you get the go ahead as although we'd all like to not have to do it I'm sure it's better to do it without delays! Linda xxx ... View more

Try Bromley Travel Insurance http://www.bromley-insurance.co.uk/breast-cancer-travel-insurance.html They offer a policy with cover for breast cancer that appears to only require a declaration from your consultant or BCN that you are fit to travel and one from you confirming that you do not anticipate requiring any treatment during your trip. Linda xx ... View more

Thanks Ladies, I managed to hold off the rinsing until an hour ago, so about 20 hours from end of chemo. I will take my own conditoner next time, I'm using Simple at the moment as skin still recovering from rads so best in the shower and that's unperfumed so should be better, the hospital didn't warn me about the need for conditioner this time so I just accepted the VO5 they supplied but I won't be using that again!! It'll be intesting to see how my hair holds out, I finished chemo with the freezer type caps in March and my hair thinned considerably with them but left enough that I didn't need a hat or wig. It has since started to grow back so I have a mixture of very short and mid neck length, not exactly neat but at least it's mine! If it thins again I could end up with a very strange look indeed, just have to wait and see! Linda xx ... View more

Paxman site says it's "best not to wash hair for 24 hours after chemotherapy" but nothing more definite than that. Would rinsing it quickly be the same as washing it? I think I'm going to end up giving in and rinsing it but just try to be very gentle with it when I do! ... View more

Anyone? ... View more

Hi, I'm glad you've found this forum as I'm sure you will find help and support here. Perhaps my story will help to ease your worries a little. I am 43 and have two boys aged 5 and 3. I was diagnosed in Nov last year with a lump that was too large to measured by ultrasound. I had an MRI scan which measured it at 15cm, so extremely large. It was Grade 3 so the fastest growing type. Like you I was not very breast aware so maybe I missed the early signs but even so it grew rapidly from the time I first noticed it. I also had at least 4 enlarged lymph nodes and biopsy showed that the cancer had spread to the nodes. Naturally I was terrified that there may have been spread to other parts of my body and like you I feared that my boys would lose their mother - my fear for them was (and still is) far greater than any fear I have for myself. I had CT, bone and MRI scans all of which came back showing no further spread which was a great relief. At this point my surgeon stopped saying that my cancer was treatable and began saying that it was 'potentially curable' which was a very good thing to hear. Due to the size of the lump it wasn't possible to operate immediately so my first treatment was chemotherapy. The lump began to shrink noticably after just one treatment. After 4 cycles (12 weeks of treatment) it had reduced to just 4cm. This was a fantastic response and my oncologist was delighted. I then changed to a different type of chemo but that was not a success and after 5 weeks the lump had begun to grow slightly. I stopped chemo and had an immediate mastectomy and full node clearance. The surgery went well and I recovered quickly. The tumour was removed with good margins and all the lymph nodes were now tumour free. Next step was radiotherapy which I completed 9 days ago. Since I stopped chemo early I'm relatively unusual in that I am going to have some more chemo now that I've finished radiotherapy. I will be having another 3 cycles of the first type (FEC) that worked so well for me. This is really just an insurance policy so that everything possible has been done. There is every reason to believe that I am currently cancer free and that when I finish chemo that will be the end of treatment for me. I am feeling well and positive and hope that my boys will have me around to embarrass them for many many years to come! It is so terrifying when you receive your diagnosis but it does get easier once you know the full picture and have a treatment plan. Hang in there, take one step at a time and come back here for help whenever you need to. Linda xx ... View more

Linda - I'll be having my last zap on monday, my onc usually sees his patients at least once during rads but as he hasn't seen me yet I'll be seeing him on Monday (he only does clinics at the rads hosp on mondays so missed last week due to bank hol). My radiographer today said that he would then see me again 6 weeks after end of rads so that seems to be standard. Doesn't actually apply to me as I'll be having more chemo starting in a couple of weeks so will obviously see onc earlier! Linda (snap!) xx ... View more

Well, I've now had 10 out of 15 and so far so good. My skin is pink - like mild sunburn - but seems to be holding up fairly well, it has been visibly pink since about zap 3 and is only getting very slightly redder each time. It's much less pink first thing in the morning which the radiographers have indicated is a good sign. Just hope it holds out for the final 5. My first 2 appointments ran late but since then they've been pretty much spot on time and I've been home within an hour and half of leaving so not too bad. The novelty has worn off though so it's a bit of a drag going back and forth each day. I'm on the home stretch now though - just as well as I feel like a ticking timebomb waiting for my skin to give up! Linda xx ... View more

Can I join in here? 🙂 I live in Watford and am currently having Radiotherapy at Mount Vernon. I'd just like to echo the comments that the tattoos are no bid deal - one in the centre of chest and one under each arm. Planning appointment took about half an hour (despite all the warnings in the letter/leaflets to allow half a day!) and the staff are lovely. I was told about the aqueous cream and given a tube at planning and at my first appoitment so started using it a week before my first session. I've now had 10 out of 15 zaps and so far my skin is holding up ok, My chest area is pink like a mild sunburn but not yet sore and that is despite having a 'bolus' to treat the top layers of skin which I was warned could make any skin reaction worse. I'm also having treatment to the area around my collarbone and that is barely noticable. I haven't had any nausea or fatigue so far - in fact yesterday we took the boys (3 and 5) to London and spent the day at the Science Museum then went to Chinatown for dinner, it was a long day but I don't think I was any more tired than I would have been before all my treatment started (I've already had chemo followed by Mx and ANC). The most wearing part of rads is having to attend the hospital every day though you do get into a routine and see the same faces each day - I'm starting to feel like LA9 is my second home! Betsy - I'm sorry your original thread has been hijacked! I really hope when you finally get your results that all is good for you. The waiting really was the worst part for me, I've found everything since far less stressful so I really feel for you having such a prolonged wait. Linda xx ... View more