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Fuffs123
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since
30-01-2015
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Wednesday
1 Hug
Hi ladies. I hope you don’t mind me posting here as fortunately I don’t have SBC. I finished treatment in Dec 15, Grade 3 invasive, 3 lumpectomies and rads but no chemo. I then was diagnosed with Paget’s Disease in the same breast, cancer of the nipple, and had a Mx. Fast forward to now and for the past month have had a persistent cough, with tight chest and pain. I duly spoke to my my GP and expressed my concern because of my previous history but was told I probably had a virus and take paracetamol. I told him I wanted a chest X Ray to be on the safe side and he flatly refused, making me feel like a hysterical woman! I was furious and so was my OH, who phoned the surgery and insisted I was seen. I had only managed to get a ‘triage’ telephone appt. still not able to see a doctor but a nurse practitioner. My best friend sadly died last year from BC mets to her liver and her symptoms were consistently ignored by her GP. I am so angry that GPS have so little awareness of SBC and being vigilant when people present with pain or other symptoms. I wonder how many other men and women have died needlessly because their vigilance has been regarded as some sort of hysteria. Sorry to rant but I am so frustrated. 😡
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13-10-2019
03:35
5 Hugs
Hi ladies. I don’t have SBC thankfully, my primary was diagnosed in 2015 and I then had a recurrence in 2017, which was missed by the hospital I was then under, despite raising my concerns on two separate occasions. However, a dear friend of mine sadly died this year from mets to her liver, leaving a 9 year old and partner behind. Her symptoms were ignored by more than one GP at her practice, despite her history of invasive BC. When she was finally taken in to hospital as an emergency, they were unable to offer her any treatment, as her cancer had spread so widely. She died only 2 weeks later. Her little girl is being incredibly brave but will grow up without her mother and her partner is trying to be the best dad he can and doing a wonderful job. This is why I am supporting the campaign to make everyone more aware of SBC, especially GPS. I send all my love to all of you battling SBC, your determination is amazing. 💕
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27-08-2018
04:07
Hi lincs_lady, wonder if you are anywhere near me, I live in Spalding? I had a right side mx in 2017 after three lumpectomies and am now considering swimming again, if I can find a mx swimming costume and prosthetic. Anyone got any suggestions for where I could buy one of these? I am very lopsided at the moment, flat on one side and J cup on the other! May have equalisation surgery on the remaining boob in the future. I have a bit of lymphodoema on the surgery side as I had quite a few nodes removed during the various surgeries, all clear thank goodness. I would say any exercise that doesn’t involve lifting heavy weights would be OK. Take things slowly to start with and see how things go.
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15-07-2018
05:38
Hello Jill and Ange! 🙌
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13-05-2018
10:44
I had 3 lumpectomies and a mx and am a 40 H, well on one side now! I found the Doreen Delicate bras very comfy and they do the larger cups. The cups are soft. If you look on line you can pick them up for about £20. Good luck with your treatment, just take a day at a time. Francine
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29-04-2018
08:40
1 Hug
Hi Appletree Glad your surgery went OK, did you find the pillow on the journey back useful?! Like you, I can’t take morphine, codeine or Fentanyl as they lower my blodd pressure and I pass out. I managed thro my three WLEs and mx with paracetamol and ibuprofen when needed but wasn’t in extreme pain at any time. I also have ME and have battled it for many years. I was borderline for chemo as altho my nodes were clear, it was a Grade 3 invasive cancer and highly ER+. I took the decision not to have the chemo after discussing it with the onc. They will probably use a computer model to give you an idea of how having or not having chemo may affect your life expectancy over 5 and 10 yrs. In my case it would only improve my chances by 2% and I was more likely to die of old age (I was 62 when diagnosed in 2015). Because of the ME and a bowel problem I also had the onc agreed that the SEs may well outweigh the benefits. You may have had the Oncotype test too but it wasn’t available on the NHS at that time. I’m sure your onc will have a good discussion with you about chemo but at the end of the day it is your decision. Try to take each day at a time but I know only too well how hard the waiting is. Sending hugs, Francine
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19-04-2018
09:52
Well another forum member told me about the cushion and boy did it come in useful. OH decided to take the quickest route home but hadn’t considered that it was littered with speed humps! That was interesting to say the least, lol. Do your post op exercises religiously but gently to start with. One tip I got was to reach up and touch the frame of the door every time you go through one. Looks a bit bonkers to others but is a good stretch for the underarm snb area too. X Francine
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19-04-2018
06:00
Hi ladies. I don’t post on this forum very often now but just wanted the pre op ladies all the best. I was diagnosed in Jan 15 and had 3 lumpectomies and snb, followed by rads. None of the ops were a bad experience and I needed virtually no pain relief, only took the odd paracetamol. I can remember how nervous I was before the first op, which happened to be on my birthday! No sleep at all the night before and thick fog on the early morning drive to the hospital made me a wreck by the time I got there. One thing I would say is to make sure the person picking you up by car brings a cushion for you, so the seatbelt isn’t right on your chest. Sending you virtual hugs, Francine.
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07-03-2018
06:56
Hi Sunflower Just wanted to echo what Charys has said. I was diagnosed in Jan 15 and since then have had 3 lumpectomies and a mastectomy plus 25 sessions of radiotherapy. At the time I was diagnosed it was awful and I felt totally overwhelmed and terrified. I couldn’t remember a thing the surgeon said to me and it all seemed very surreal. However, once your treatment plan is in place you will at least know the way forward and feel a bit more in control. If you ca, take someone with you when you see the surgeon or oncologist, so they can remember what had been said. I think your brain goes in to self protect mode at the start and just shuts off! Write down any questions you have so you don’t forget to ask them. Apart from taking an oestrogen blocker, as my cancer was highly ER positive, I am back to leading my normal life, as you will too. Sending you virtual hugs. 😀
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04-02-2018
03:34
Sorry, when I said this year I meant 2017! Clearly I’m not quite in 2018 yet, lol.
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04-02-2018
03:32
Hi Vicqui I had a recurrence in the same breast in July this year, after having three lumpectomies and 25 sessions of rads in 2015. It was diagnosed as Paget’s disease, which is a cancerous condition of the nipple. I’d have thought that the rads and the meds I was put on, the original tumour was highly ER+, would have prevented a recurrence but not so. Sometimes it’s just bad luck and no obvious reason. I was BRCA tested, as I do have a family history, but negative fortunately. Never had any node involvement either so the recurrence was surprising. Have a check up in March but as far as I’m aware all is OK. I was borderline for chemo originally and I decided not to have it, due to my age and other health issues. My onc was in agreement. Life can just be a pain in the arse sometimes can’t it!
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03-02-2018
03:13
Hi Jane. I haven’t posted on this forum for quite a while but often read the posts. I was so moved by your horrible situation that I felt the need to reply to you. My history is that I was diagnosed with Grade 3 IDC in Jan 15. I only noticed the tiniest pucker in the skin of my right breast, didn’t feel a lump at all, but decided to ask my GP to have a look at it. She referred me straight away to the Breast Unit, where I had a mammogram and ultrasound, which picked up the lesion, as they called it. I had 3 lumpectomies, trying to get a clear margin, node biopsy all clear thankfully. I then had 25 rads. Put on Anastrazole, as I’m post menopausal. In May 17 I noticed the nipple on the same breast was flaking and bleeding. Alarm bells rang straight away and I was referred back to the Breast Unit. Surgeon did an immediate biopsy and was pretty sure it was Paget’s disease, a fairly rare cancer of the nipple. Given my previous history, he recommended a mastectomy, which I had no issue with. We had no idea whether this had spread to the rest of the Breast or the nodes at that stage. Had the mx and another node biopsy in July 17 and thankfully no spread. I am now considering whether to have the other breast removed, firstly because I’m in a high risk group with family history and secondly because I’m very big busted (H cup) and now very lopsided. My prosthetic is very large and cumbersome and no bra holds it properly. I’ve tried the lot! Don’t wan’t reconstruction and am quite happy to be flat. The MDT is fully supportive of another mx if I want it. Anyway, I am so sorry you are having such awful problems with infections but I think it’s very important you get your second opinion before you agree to a mx. I don’t see how anyone can say the infections will go on for 10 yrs. There must be a reason behind these infections, have they swabbed and isolated any specific bacteria? May I also assure you that your husband loves you for who you are and having a mx will not change that in any way. Of course it’s a time of adjustment for both of you if you do end up having an mx but you will still be the same people. Sending you virtual hugs, please keep us posted. Francine
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31-12-2017
04:16
Hi Beryl and Sharon Wish I could have got to the meetup and carol concert but there’s always 2018! Hoping it will be a better year for me whatever I decide about the op. My daughter has just gone off to Brussels to spend New Year with an old uni friend. She backpacked round Japan on her own in November so is a great traveller. No sign of her settling down yet but then 35 is the new 25 apparently! Since selling the business and retiring I’ve felt very much at a loose end so have joined the local Macmillan fundraising committee. They raised nearly £40k last year which is pretty amazing for a small town. Well I wish you all a very happy New Year, with lots of good health and happiness. Love Francine xx
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30-12-2017
07:57
Hello everyone, it’s Francine back in the land of the living! Hope you all had a good Xmas. Had my mx in July and recovered quite well although still having some problems with underarm tenderness and shoulder pain. Big relief that further node biopsies were clear so no further treatment and no longer on Anastrazole. However, have a decision to make sooner or later about mx on remaining boob. It is very awkward having one flat side and one J cup boob. My prosthesis is huge and weighs over 2 lbs, lol. I would rather be completely flat to be honest and am not interested in reconstruction. Trouble is I reacted very badly to the anaesthetic, problems with heart and blood pressure, so not keen on that again. Surgeon won’t entertain a local for the op and looked at me as if I’d gone completely bonkers! He and MDT are happy to support a mx on the so far healthy breast, for symmetry and risk reduction. Will be having my 6 month check up in January but won’t be rushing any decision. Anyway often think of you all, here in cold and windy Lincolnshire. Hoping we all have a healthy and happy 2018. Love Francine xx
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30-12-2017
07:44
Hi Rebecca Sorry for the delay in replying, Xmas got in the way! It was only the actual nipple that was affected. It was a scaly type thing which kept sloughing off and then the nipple would bleed. It would then crust over again and then fall off and bleed again. As it was the same breast that I had had 3 previous lumpectomies on and 25 rads, onc and I agreed that we would go straight to mastectomy rather than nipple removal. The nodes were biopsied again and no spread, relief. Are you worried about a similar thing on your nipple?
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22-06-2017
10:35
1 Hug
Hello lovely ladies! Unfortunately, things not so good for me. I've had a recurrence in the same boob and am having a mastectomy next month. It's Paget's disease, which is a cancerous condition of the nipple. We moved to Spalding in Lincolnshire last December, ready for a peaceful retirement! I had raised concerns twice about the nipple with Leicester Hospital who I had all my treatment with but they told me it was just damage from the rads. My new GP here transferred my care to Peterborough Hospital and when they reviewed my notes they called me in for a check. Consultant sent me for an immediate biopsy and said he was pretty sure it was something to be concerned about as it was too long down the line for rad damage. Turned out he was right. Because of previous 3 WLEs he feels mastectomy is the best course of treatment and I agree. Recon further down the line perhaps. Obviously not the news I wanted but that's life. Pleased to hear you are all OK. Love Francine xx A
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17-06-2017
04:48
Hi Jacey I completed 25 sessions of rads in Dec 15 and can definitely tell you not to use after sun lotion. A rad burn' or redness is not actually a burn like you would get from the sun or something hot. It is an immflamatory response to the radiation. Use Aloe Vera Gel, keep in the fridge or E45. Hope this is helpful.
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27-05-2017
09:35
Hi Ann Thank you for your reply. Didn't think I'd be back on this forum again! I have another appt with surgeon next Friday so will ask some of the questions I forgot to last time. Same old, your mind goes blank when you get your diagnosis.
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