Breast Cancer Now Forum

Hi dclem4 You are one of the only people I’ve found that have been diagnosed with Paget’s Disease, as I was in 2017 and I’m also big boobed (H cup)  Briefly, I was diagnosed with ER+ IDC in Jan 15, not spread to nodes thank goodness  I had 3 lumpectomies and managed to get a clear margin after no 3, then had 25 rads, no chemo  A fes months later I noticed some bleeding and crusting on the nipple on that side and after a biopsy it was found to be Pagets, with quite a lot of suspicious changes behind it  Mastectomy was the only choice then really, which I accepted as necessary  I wasn’t offered any sort of reduction on the good side and I decided not to go for any sort of recon on the Mx side as I was uncertain about how I felt  Fast forward to now and I’ve had a lot of problems on the remaining boob side, neck and shoulder pain due to weight of rH cup boob  Also the large prosthetic I have to wear on Mx side is not very comfortable especially in the summer and I have a problem getting a bra in an H cup that it will fit in properly. For some reason, manufacturers don’t seem to think that H cup and above ladies have mastectomies! I now have moved to a different part of the country and my new surgeon is very supportive of my desire to have a Mx on remaining side but I had to have a discussion with a clinical psychologist first which I have now had. I have decided at this time to go completely flat and tbh it will be a relief not to have the one big boob and flat on the other. It is of course a very personal decision for anyone and you have to reach a decision that you’re comfortable with. I am 67 and have no problem with my body image flat but I have to say that my OH of 43 yrs is more concerned that I might regret it later. I’m sure I won’t but I will have the option of implants later if I do. Wishing you well. Francine x   ... View more

Yep, people with good Vitamin D levels have been shown to recover more quickly from COVID. Interestingly enough mine was low when tested and I was also being investigated for irregular heart rate and chest pains. Since taking Vitamin D3, both symptoms have virtually gone. Could be a coincidence of course? I ... View more

Hi Paris I also had same problems with Adcal and they really irritated my stomach also. In the end I just took Vitamin D3, which I still take although I am not on active treatment and I try to eat as rich a calcium diet as possible. Not had any problems with my calcium levels so far so keeping fingers crossed.  ... View more

Hi TLC 2019 I’m sorry you’ve had to go through such a worrying time, having two diagnoses in a short time is a blow but it sounds like you have a very good and thorough doctor.  I had 3 lumpectomies for invasive ductile carcinoma, no lymph nodes involved, as they had problems getting a clear margin  I then had 25 sessions of radiotherapy and was put on an oestrogen blocker, Anastrazole, as I was ER+. About a year later I noticed some concerning problems with the nipple on that side and after a biopsy was diagnosed with Paget’s Disease, which is a fairly uncommon cancer of the nipple. I then had a mastectomy, which I agreed was the best decision, due to the previous diagnosis. I didn’t opt for reconstruction, as I had other health issues and wanted as short an op as possible. The problem now is that because I am big breasted, I have to wear a large false boob, which is not very comfortable and never seems to fit properly in any bra I buy. Also the unbalanced weight of the remaining boob causes me neck and shoulder pain and is actually affecting the muscle under it. I have therefore taken the decision to have the remaining breast removed, which my surgeon supports. This is also for risk reduction, as BC runs in the family  . This week I am speaking with the clinical psychologist to discuss my decision, which is a requirement in my part of the country if a healthy breast is to be removed. I have decided to remain flat on both sides at the moment  I am 67 and have no concerns over body image but I completely understand how some women may feel differently, especially if they are younger. It’s a very personal decision, which I have thought carefully about  Having a mastectomy because of cancer seemed the only and best option at the time but removing a healthy breast is something else.  Sending you hugs. 💕     ... View more

Hi Bookish Thanks for your reply  I was a bit surprised to get an appt with the psychologist fairly soon, which will be a video consultation  I have to say that I’ve had some quite negative comments from various people about having a healthy breast removed, which doesn’t entirely surprise me and doesn’t bother me TBH  Perhaps I’m unusual in not having an emotional attachment to my boob (!). I see this as a purely sensible thing to have done, which will make me more comfortable and reduce my risk  BC runs in the family and although my BRCA test was negative, they don’t rule out a genetic link somewhere.  I hope you!re recovering from your op and send you virtual hugs  x Francine     ... View more

Hi there  I have been on both Anastrazole and Letrozole, was put straight on Anastrazole when diagnosed as I was already menopausal  I did find that both gave me some joint pain and hot flushes and you also need a bone density scan every couple of years, as the blocking of all the oestrogen in your body can affect your bones  This didn’t happen with me I have to say and my bone scans have been fine  They usually prescribe Vitamin D3 along with these inhibitors and sometimes Calcium. Adcal is a combination of both but I found this a bit heavy on my stomach. I tried taking them both at night or in the morning but it didn’t make much difference to be honest. Some ladies don’t feel much in the way of SEs at all from either of the drugs so you may be fine with them  at the end of the day, either of them are very effective against ER+ BC and this was the most important  thing for me. Take care x     ... View more

Hi there.  You’ve certainly been through it! I had 3 lumpectomies followed by a Mx and 25 sessions of radiation and I did suffer pain in my ribs and sternum for quite some time after and still do from time to time. Personally, I always ring my BC nurse at the hospital if I have any worries or concerns, which is much more effective than talking to my GP (especially with COVID). They can organise scans if they think it necessary or make you an appt with your surgeon, just to check you out. They are usually very good but you may have to leave them a voice message. No one will think you are a bother believe me.  Take care xx     ... View more

Hi Rachel I really feel for you, going through such a difficult time with COVID to boot. I would be highly surprised if  you didn’t feel completely overwhelmed at the moment and having difficulty sleeping. I’m sure a triple negative diagnosis wasn’t what you were hoping for but treatment has progressed so much for all types of BC and the outlook is very positive. Try not to Google, hard as it is (I was very guilty of this!). A lot of the stuff is out of date and doesn’t represent current thinking or treatments. I also had to have genetic testing for BRCA 1 and 2, as I have a family history. I was very concerned for my daughter. Fortunately it was negative but she will have to be monitored and have mammograms from age 40. I can’t speak for current times but my result came back quite quickly and the geneticist rang me before he sent the letter. I’m not a good sleeper and everything seems so much worse in the early hours of the morning. I found listening to the radio or watching stuff on my iPad helped me during the sleepless hours, using headphones so I didn’t disturb my husband. I often fell asleep with them in.  As regards telling other people, just do what you feel comfortable with. I know some ladies who didn’t want anyone other than their close family to know they had been diagnosed and others who were happy to share with friends and colleagues. It is completely your decision. Be kind to yourself and allow yourself to feel like cr**p! I had meltdowns in the most stupid of places, once in Sainsburys when they had run out of my favourite biscuits! I just sobbed in the middle of the aisle and I’m sure people thought I’d gone mad! I was also sick of people telling me to ‘stay positive’ when I didn’t feel like it. A good cry can be very therapeutic.  Glad you got some bras anyway.  Please keep in touch, we have all been through the BC journey, in one way or another so can support you in rough times. Love Francine xx       ... View more

Hi there. Just thought I’d pop in and give you some ideas about the post surgery bras  I’m also a GG/H cup and found most of the soft bras didn’t go up to my cup size  In the end I found the Triumph Delicate bras were good  Make sure you get the Delicate one though and not the standard Doreen  They have large cup sizes and no underwire  The hospital will give you a softie after the op which I found best to pin in it with a couple of those small safety pins  I had three lumpectomies followed by a mastectomy, so quite a bit of stuff done  I also found the Bravissimo sports bras good. Sending you hugs  You will get through this horrid time in your life and you will find a strength you didn’t know you had. There is life on the other side and although you can’t imagine ever feeling ‘normal’ again, you will. This forum was a Godsend for me when I was diagnosed in 2015 and I still talk to some of the ladies I met on it. We all understand how you are feeling at the moment and you can vent at any time   Love Francine x   ... View more

Hi Tait75 I have experience of Anastrazole causing me joint and muscle aches and also worsening my vestibular migraines, which cause dizziness. Fortunately, I didn’t have to take Pertuzumab or Herceptin, so can’t comment on their side effects, although I’m sure others on here will be able to. I asked to be switched to Letrazole, which helped a bit. Unfortunately, because of the hormone blocking action of these drugs, I think the absence of any oestrogen in your body is often a trigger for migraines in some people. You could try asking your oncologist if you could switch to Letrazole and see if this does help. Worth a try. All the best.  Francine ... View more

Hi Helen I was wondering how you were getting on and I’m so glad that your news was good. As Jane has said just take one day at a time and you will get through it and we will be here for you. You have already been through two invasive surgeries and done so well. I think the lymph node removal leaves you with a weird feeling underarm, sore but numb at the same time! One little exercise tip I was given was to reach up and touch the door frame every time you leave a room! Sounds a bit strange but it helps to stretch the arm and I still do it from time to time, when my arm and shoulder feel a bit tight. Love Francine x   ... View more

Glad you sorted a softie for your mum. I have to admit mine got on my nerves as she (Sally the Softie as I named her) had a life of her own! Difficult to keep in the bra because it’s light and had a habit of trying to creep up my neck, lol. In the end I used to pin it in my bra with a couple of small safety pins. The proper prosthetic is heavier and tends to stay put.  One thing I would suggest as a single big boob lady (!) is to try and wear a bra whenever comfortable, to support the other boob. I had a habit of going braless sometimes but found that I had problems with my neck and shoulder on the boob side. Putting a silk scarf or anything soft inside the bra to start with is more comfortable I found. Wishing you both all the best.  Francine c ... View more

Hi there.  Sorry to hear about your mum. It’s horrible isn’t it, when you feel so helpless. I’m a big boobed lady although only one left now I’ve had a mastectomy. I’m an H cup and had no problem getting an H cup softie and prosthetic, although it had to be ordered by the fitter. They normally come to the hospital and you arrange an appt to see them. They are very helpful and sympathetic  I think your mum should be able to get the right size but the Breast Cancer Nurse should be able to help you in this  I actually wear a sports bra from Bravissimo, who do large cup sizes as I didn’t find any of the other companies had much for the G cup plus sizes. You can order a few online and send back the ones that are no good. They are not cheap, usually around £40, but I think are worth it  Hope this helps and sending you and your mum virtual hugs.  Francine x       ... View more

Hi Silvertong I had three WLEs before my Mx and I think the burning sensation you have is the nerves in the breast coming back to life and some inflammation, which is the body’s natural reaction after any surgery. My breast was quite numb for about a week or so after the ops and then I started to get shooting, burning type pain all over it. As others have said it would be a good idea just to check in with your BCN for some advice and reassurance but I used Aloe Vera gel, kept in the fridge, but not on the incision area, which will still be healing. It was very soothing.  Take care and sending you a virtual hug   Francine x       ... View more

Hi Helen Never apologise for not replying to posts quickly. You have so much on your plate, which would be difficult enough in normal times but even worse with COVID. My daughter was in her 30s when I was diagnosed and worried from a distance, in London. But I think you’ll find that other ladies on the forum with younger children had similarly experiences to yourself. Some seemed to withdraw from the situation, others were upset and younger ones didn’t really understand what was going on. The only thing I can say is that children are remarkably resilient and seem to come to terms with things in their own way, in time. Your little one must find things difficult and it must be extremely challenging for you.  I wish you lots of luck for your surgery on Tuesday. Thank goodness you didn’t have to wait any longer, as it’s slow torture just waiting I think. I had 3 lumpectomies before the Mx and each time it was 2 weeks before I got the results. I also had a seroma after my Mx which was drained a couple of times. As Sam said, they sometimes have a habit of coming back but your body will reabsorb  it eventually.  Check in again when you feel like it.  Love Francine x ... View more

Hi Helen Just wondering how you are doing? Trying to catch up with some gardening here in windy Lincolnshire. Where abouts do you live? Love Francine x ... View more

Night time wobbles, know all about those, as I’m sure lots of ladies do as well.  It’s quite common to see people posting and replying during the night so feel free! Everything seems worse at night I think and your mind goes into overdrive.  Goodness knows how many hours of TV I watched on catch up on my phone or iPad. It’s natural for you to be going through the ‘what if’ scenarios and I would be very surprised if anyone diagnosed with BC didn’t wonder at some point how long it had been there for before diagnosis. Some tumours are fast growing and some are not so it’s a question that probably can’t be answered. You sound like a very positive person and I’m sure you will find your own way of coping and taking each day at a time  Take care Love Francine x     i   ... View more

Hi Helen.  Sorry to hear that your news wasn’t great. Fortunately I didn’t have node involvement although it was a Grade 3 invasive situation. Think they just managed to catch it in time. I didn’t opt for chemo as the onc said it was very borderline, taking my age in to account. However, a year later I had a reoccurrence under the nipple and had to have a Mx. I often wonder if I should have had chemo in the first place, so I completely understand how you feel about it.  I’m sure there will be ladies who have had a node clearance and chemo reply to you and support you. It’s so good to talk to people who have been through similar things and you will get great advice. Take care   Francine x   ... View more

Hi Helen Wishing you all the best for your results tomorrow. It’s a scary time waiting. I hated having my appts in the late afternoon as I sat all day sweating about it. I’m sure you’ll find the breast team very understanding about your scar worries and they will help you to get through it. Do you have anyone going with you? I got into the habit of writing down my questions before the appt because everything just went out of my head as soon as I got there, your brain just wants to switch off I think.  Keep us ladies posted on how you get on . We’ve all been through it before so we know just what it’s like for you, but especially with all this COVID stuff going on. Love Francine x   ... View more