Hi,
My wife, Rosie, has just been diagnosed with breat cancer. Because the original needle biopsy performed six weeks ago didn’t work properly the doc said let’s get the lump out and do the biopsy on that. She had a lumpectomy two weeks ago.
We’ve been through hell these past six weeks just waiting, waiting, waiting. It is obviously a horrible thing for poor Rosie to be told that she has cancer. We were still holding out hope of an adenosis or some other benign lump. But we can at least take heart in the fact that it’s out. The cancerous lump has been removed.
Also it was confirmed to be 13mm which he said was very small. The best news of all was that it was grade 1, the slowest growing (or the least aggressive) of all. So although it is cancer it’s also small, slow and we caught it very early. There is however a small chance (the consultant reckons about a 15% chance) that it may have spread to the lymph nodes, or to turn that on it’s head there is an 85% chance that it hasn’t! He seems to think that it probably hasn’t, but Rosie will have to go back in for another op just before xmas for a sentinel node biopsy and to cherry pick a couple of others out. For some reason it is a four-week wait. Annoying.
They haven’t had the full results back yet, meaning that we don’t know if it’s ER+ or not. He seems to think that it probably will be. So even if the cancer hasn’t spread to the nodes Rosie will still be having five years of Tamoxifen. We have been trying for kids so this is very disappointing as Tamoxifen for five years would rule that out (Rosie is 41 this month). The consultant reckons that if it hasn’t spread to the nodes, and she doesn’t then need chemo, there might be a workaround. For instance, she could delay the Tamoxifen for, say, a year, which would at least give us a chance.
Overall then, it’s terrible and depressing news, but we can at least take heart that it’s out, it’s small, its been caught early and it’s very slow-growing.
Bob
Hi Bob, sorry to hear about Rosie’s news - any diagnosis of breast cancer is a real shock and it will take time for it to sink in - you are right in that if its grade 1 then its the less agressive and quite a small tumour so there are some positives in there for you both. A sential node biopsy is standard and they just need to check that it has not gone into the nodes - I had my biopsy when I had my lumpectomy but unfortunately he found 7 nodes with cancer so I had to have another op to have all my nodes removed, but as they didn’t get clear margins either so they had to do a Masectomy and did it at the same time. I had a two week wait. It is a worry and a four week wait for this second op is not good but I suppose at least she will have had time to recover fully from her lumpectomy. With regard to fertility they can harvest eggs prior to any hormone theropy and if I were you I would ask for a referral to a fertility specialist and they will advise on the best course of action and exactly what is available to you. It is very hard and as you say despressing but it does get better and there is light at the end of this dark dark tunnel. x
HI Bob and Rosie,
I’m in a very similar place. Was diagnosed yesterday following a lump removal 2 weeks ago. No cancer was suspected at the time 'cos its so near the nipple on my areola. Hence no margins were taken. Have to go back for full margins and sentinel node biopsy on DEc 5th. Have been recommended that they take all my nipple and areola during margin surgery.
It’s all such a shock but like you say 85% chance that it hasn’t spread to the lymph nodes. Hope you can avoid the tamoxifen. Will remember you in my prayers. Is humbling to realise others are in similar position. x
Hi all
As well as the support you are receiving on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
Also, do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.
Best wishes Sam, BCC Facilitator
saffronseed - Thank you. We will indeed be asking our GP to refer us to a fertility specialist. My wife’s sister rang up today and gave us what turned out to be false hope. She said the age for IVF was raised about four months ago to 42. We thought, hey! But it turns out is was only a NICE draft guideline with no statement due until next year. And even then it is up to the individual PCTs whether or not they implement it. Our current PCT’s IVF age limit is 40.
millymolly_m - Thanks for your reply. I’m sorry to hear that you’re in a similar place. Yes, fingers crossed that we can avoid the Tamoxifen.
Bob
Hello Bob and Rosie, so sorry to hear you are here but welcome, there is a tonne of support here and you are not on your own. I echo what saffronseed said, although I have no personal experience of this if Rosie would feel up to joining the ‘younger womens breast cancer network secret group’ on facebook, she can send a message to vicki (tors on here) and she will add her to the group, its totally private and only for those with BC. There are a number of ladies on there who she can ask about their experiences with fertility questions and worries, there is an active thread on fertility at the moment. I have had a lymph biopsy, where 2 were removed (both clear), have had an mx (1st Nov) and just found out I dont need further treatment, I am 45. You can also ask for a second opinion too if you feel that would help. I asked for a second opinion, it was still within the north west where I live so easy to travel to and although I was not looking for a different answer or to move my treatment, it really helped me to feel that I understood more about what was happening/what options there were and what was to be done and ultimately I felt more empowered. It is different for everyone and everyones treatment is unique to them and their situation. I wish you luck and peace while you are waiting, its always the most horrible part but it surprisingly goes quickly, lots of hugs to you both, Jayne
Hi Bob and Rosie, This is a distressing time for you especially with you wanting children. I was diagnosed back in May of this year, my tumour was 3.5cm and just bordering on grade 3 and aggressive, my lumpectomy was good and I had no spread to my nodes I am ER+ and HER2- so the best combination, I feel very lucky. I have just had my 4th of 6 chemo treatments and radiotherapy starting in January. It has been a long emotional rollercoaster.
I feel very positive about the future and I think you and Rosie should too. Mental attitude is everything, stay positive, talk to family and friends, their support is so essential, I would not have got through those early days without them. Try not to ‘google’ too much, sometimes it raises too many questions, be guided by the people who are caring for Rosie and you and you are just as important in fact I think it’s harder for partners because it is such a difficult time, just be supportive and give her lots of hugs. You may not think this right now but you will get through this and you will be stronger because of it.
Best wishes and stay strong
Nicola
Hi Bob and Rosie!
I’ve been looking out for you but I’ve been a bit slack and not been on here this week! I guess you must pluck the positives out of everything but it’s a beyond scary situation. I’m so glad you have these forums to help you and get support! The ladies and gents out there are amazing!
I hope you get through this time and know you are in my thoughts.
Love Viv x
Just a quick note to say thanks again for your messages and support.
I forgot to mention in my last post what type of cancer Rosie has. It is tubular cancer, which apparently is rare. But at least it seems to be one of the least aggressive ones. I’ve got a copy of the pathologist’s report and it includes the following:
‘…Grade 1 (tubules 1, pleomorphism 2, mitosis 1) invasive ductal carcinoma of the tubular type. There is associated low nuclear grade DCIS of cribriform type. No vascular space invasion. Malignant calcification can be seen.’
Any experts or knowledgeable people out there who can enlighten me further on those report details?
Bob
X
Hello Bob and Rosie,
How are you doing and what stage of treatment are you at now. It has been a while since we heard from you so I guess you have been busy with appointments and stuff. I hope you are getting prepared for Christmas and can enjoy your time together. Love Tracy xxx
Bob, Sorry I didn’t see this sooner. I have been looking out for you but I don’t come on here much any more. Just wanted to stay that I have tubular bc and know quite a bit about it - have done a fair bit of checking up on it - so if I can help at all just say. Although a diagnosis off breast cancer is horrible, I was told that - if anything in breast cancer could be considered lucky, being tubular is. It is a slow growing breast cancer which is quite unlikely to spread to lymph or metastase. Of course no one can ever say never, and they need to check, but they told me that the prognosis for women with tubular is excellent.
As you say, tubular tends to be hormone positive and her- and I was told by the breast surgeon that I was borderline for needing tamoxifen (it wasn’t in my lymph thoughI also had a sentinel node biopsy) though the oncologist was keen for me to take it for five years as a prevention against ever getting any other type of bc. It only makes 1% difference to my prognosis (tubular is good, a small chance of ever getting a recurrence, I won’t put the stats on here but happy to PM them). I didn’t need chemo because I was grade 1, stage 1, no nodes. This is hopefully what Rosie will turn out to be too. I did have radiotherapy after my lumpectomy to be on the safe side in case there were any stray cells around.
I am older than Rosie (47 at diagnosis), 49 now so children weren’t on the agenda, but I have in any case just been taken off tamoxifen. My BS said that he would consider taking me off it after a year as I was so marginal for needing it. I got to 20 months, no real side effects, but then it seemed to cause me some gynae problems. They decided that I should stop taking it and also, that with my diagnosis - and we are all different - that other hormone therapy would be over treating me. So here I am, finished treatment, 20 months down the line.
It has been a tough road at times, though I know I am relatively lucky. I just wanted to say though, that had I wanted kids (I am fortunate enough already to have teenage sons and don’t want more at my age), there would be no reason why I couldn’t have them after 20 months of treatment. In fact I am fairly sure they would have agreed either to me delaying tamoxifen or not taking it.
Ps: good luck and just PM me or say on here if I can do anything to help re tubular x
Hi Tracy,
Sorry I haven’t posted for a while. We have been waiting (again!) for Rosie’s lymph node op. Well, the day has finally arrived and I am taking her to the hospital today for the op. They will be doing a LNB and I believe they may cherry-pick a few other nodes, just to be absolutely sure.
Mary grace,
Thanks so much for your post. I didn’t expect to find a woman on here who has tubular cancer as it is so rare. I’m so pleased for you and heartened by your recovery. How lovely it must be for you to be free of it. I suppose there is still a small chance that it has spread to Rosie’s lymph nodes, but if it hasn’t then we may ask the consultant (a fantastic man) if Rosie could perhaps delay taking Tamoxifen for a year or so, maybe even two years, to give us a window of opportunity to conceive. We really would love a child. Everyone we know, it seems, has had or is havng children and we’re secretly so jealous, or as Rylan from XFactor would say, we’re well jel.
Thanks again for your support and I’ll let you know when we get the results through. XX
That made me smile Bob about Rylan. 
Hope it all went well for Rosie on Friday and that she is recovering slowly at home today. I know you will be looking after her well. Take good care of one another. I am praying that you can still have the opportunity to try for your much wanted baby.
Lots of love and hugs to you both Tracy xxx
Hi Bob, there are one or two of us who are tubular, but as you say it is rare, and it is also good in terms pro prognosis. Fingers crossed for Rosie’s lymph results. I was told that spread to lymph is unlikely with tubular, though they need to check and I remember saying to them that I wouldn’t let myself believe in a positive outcome until I had the results. Fingers crossed for you both, I think, had I been in Rosie’s position they would probably have let me delay tamoxifen for fertility reasons so I have everything crossed for you both x
Tracyld,
Thank you. Rosie’s op went OK and she has been back home for three days now. She tired and very sore but doing well-ish. We didn’t get to speak to the consultant afterwards to ask how it had gone becaue he’d dashed off to go on his holidays! Rosie is doing alright but she has a chest infection from a bad cold. She had the cold when she went in and we weren’t entirely sure that they’d do the op, but they decided to go ahead after giving her some sort of wonder drug that seemed to stop the cold completely, albeit temporarily.
The chest infection has got quite bad so she’s off the GP today.
Mary grace,
Yes I think spread to the lymphs is unusual with tubular. The trouble is we got carried away and just began to assume her nodes will be clear. Before her op the consultant met her to discuss it and Rosie asked when she would be starting the radiotherapy. He said, “Hang on, I haven’t ruled out chemo yet. The chance is quite small that it’s spread, but there is nevertheless a chance”. It was a wake-up call for us and of course, he’s right. We shouldn’t assume anything yet. We now have a long wait for the results.
Bob
XX
Hello Bob and Rosie,
How are you doing ? I have been thinking about you both and hoping that the test results were good. Tracy xxx
Hi tracy,
We are off to the hospital in a minute to find out the results of the LNB which was done in early December. It’s been a long wait, partly because of the Xmas break and partly because the consultant has been on a long holiday!
Although tubular cancer doesn’t often spread we are still very nervous and worried. A 15% chance is still a chance. I’m not at all religious, but I’ve been praying to myself that it hasn’t spread.
Oh well. Off we go…
x
Hi Bob and Rosie
Just wanted to wish you luck today - hope it goes well.
Big hugs Lozza x
We got the results today of my wife Rosie’s LNB. She has been given the ALL CLEAR! WEY HEY!!!
No spread to the lymph nodes AT ALL. “Come back in a year for a mammogram check-up. Bye” Jesus H Christ I cried, like a muppet. Rosie didn’t. I couldn’t help it. It came out of nowhere. Five months of tension, worry worry worry, and just plain awfulness came pouring out. Oh well. so much for English reserve. But dammit I love her. She’s my life, the reason I do everything and anything.
I’ve learned a lot about breast cancer in the last five months, and I know that even if it had been an aggressve type and had spread there is still a whole arsenal of things that the doctors could have thrown at it. They are brilliant. As one nurse said to me, if we all have to get one cancer let it be breast cancer, because there is so much they can do now. It really is amazing.
The hospital we were at was The Great Western Hospital at Swindon, and I have to say that they’re fantastic. The NHS gets a lot of stick, but this government needs to understand something. There are people, ordinary people, often on low wages, who every single day devote their time to making people feel, and be, better. It’s an incredible thing, to be so selfless and altruistic. It brings out the best in people, that compassion that is in all of us, even if it is sometimes buried deep. Skill, patience, understanding and compassion is all we got at The Great Western, and I will never forget them. Long live the NHS.
And a big thank you to all on here too. There was a time when I was a mess. A wreck. Bloody hell it was a dark time. But this forum, and the wonderful staff on the phones, helped me through it. Thank you, and I wish every one of you love and the best of everything.
Bob & Rosie
x