We are Macmillan. Cancer Support
Hi there, I posted in the general group and have now found this one which is more specific.
I was diagnosed with breast cancer around a month ago and have had the wide local excision and sentinel node thingy. I got clear margins and no node involvement which I was greatly pleased with but they had a hoke about and removed a nodule and other tissue and have found early changes in the cells showing ductal carinomal in situ which has freaked me a little! Is it rare to have two forms of cancer going on at the same time in the same breast?
I should say I'm 52 and healthy(well I thought so!). They have discussed further surgery with me or to consider a mastectomy. I was shocked at first but now think it may be better as I am a worrier and will always feel like the breast is a ticking time bomb. But then what of the other breast?
Is there anyone here who has had similar? I am having radiotherapy only and tamoxifen as the main lump(under a cm) is estrogen positive.
Would be grateful to chat with others just boarded the cancer train and feel like they're in for a hell of a ride...
I was first diagnosed back at the end of April. At first the felt it was only a small lump and that we were looking at a lumpectomy and radiotherapy with Tamoxifen for 5 years. However, they sent me for an MRI scan and what showed up meant I had to go back for further biopsies. The results of these showed the cancer to be in the lymph nodes and a further area on the other side of the nipple was also affected.
We were then looking at something slightly more involved and as such I had a mastectomy on 18 June and I also had 11 lymph nodes removed from under my arm.
I am to start chemotherapy on 29 July and will have 6 sessions then move onto tablets. I am unable to take Tamoxifen so my oncologist has said that there is an alternative tablet with monthly injections as a back up.
Everyone's situation appears to be quite different from the next person and there does not seem to be any logic to cancer and how it is affecting different people. Even the treatment that is suggested to each person seems to be slightly different. That is why I try not to get too hung about it and stay positive that my team of professionals understand my personal situation and are treating it the best way they know how.
This site is excellent to keep 'abreast' (pardon the pun) of how people are facing up to their own diagnosis and there are a lot of helpful tips from people who have either completed their treatment or who are still going through treatment.
I have never felt caught up in such a whirlwind as this before, it is certainly an eye opener. Talking about cancer and dealing with it each day it is like being part of another world/planet. The terminology and abbreviations can be quite confusing at times!
I hope all goes well for you, I shall keep an eye out for other posts to see how you are getting on.
Hi Chris, Re - DCIS, the Ductal part means it's found in the milk ducts and the "in situ" means it is localised in this place, it doesn't travel so is non invasive. It is common this type localised doesn't need chemo, if they are certain they have got it all with clear margins, but other factors may mean that chemo is also used. Was the first lumpectomy not for dcis then ?
In Jackie's case her BC was DCIS 8m/m just behind the nipple, but it was also found to be HER2 hormone receptor positive so this meant she had to be given Herceptin but in order to get Herceptin she also had to have Docetaxel chemo but she is ER+ (oestrogen receptor ) positive as well. So for her she got the full monty mastectomy, FEC then Docetaxel chemo, Herceptin and radiotherapy.
A receptor is basically like an on / off switch which switches on the cancer cell growth if the hormone it it positive for is found in cells in your bloodstream i.e. oestrogen or progesterone etc.
The oncology drugs given target these receptors and either switches them off permanently, or by reducing your hormone level stops the cancer cells from developing further and in a lot of cases actually shrinking them by cutting blocking off it's receptors or starving it.
Yours were found at a very early stage so that is great, have you had any info yet regarding the HER hormone receptor status yet or they just told you about being ER+ ? This will determine more than anything how your treatment plan will work out. We are 14 months past diagnosis / surgery now with only 2 Herceptin to go and continuation of her 5 years worth of Letrozole. They are not unduly worried about BC occuring in her other breast but obviously keep a close on things with regular mammograms and scans. Assume your sentinel nodes check must have been given the "all clear" ?They are a great bunch on here, best thing we ever did was joining up to Maccyland :-) Keep us informed as to where you go from here, as for the train ride bit, well expect to be derailed a couple of times along the way, but it's all so do'able and the time soon goes.Kindest Wishes and very good luck, George & Jackie.
Thanks for coming back to me so promptly! It sounds like you are a few stops ahead of me on this cancer train ride. How did you find the mastectomy? Probably a silly question but I mean in terms of recovery etc. If I do go that way I believe I can't have reconstruction until radio is completed.
You are right about everyone being treated in a completely different way. My consultant(nickname ice queen), does not really 'do' questions. When I asked her after the core biopsy what type of cancer I had, her reply was 'it's breast cancer"! I've have settled on a truce and just pump the nurse for info after our consult. I have heard she is the best so no point in moaning about her communication(or rather lack of) skills.
You are right about this whirlwind. I feel I have very quickly had to learn a new language with this whole cancer thing. I sometimes feel it hasn't quite hit home as I have hardly cried much(not like me!) I am going for counselling with this wonderful organsisation as I am lucky they have a centre in Belfast close to my hospital. I can't really talk to my sisters whom I am close to as I don't want to upset them. My newish partner is lovely but he is too damn positive for my liking sometimes about the whole thing and I feel like screaming at him sometimes 'I've got cancer!" I'm entitled to feel a little self reflective and sorry for myself at times.
I wish you well in your upcoming chemo and will tune into your posts as well.
Hi George and Jackie and again thank you so much for your prompt response. It means a lot to 'chat' to people on the same journey whether they are nearing the end, middle or beginning!
The lumpectomy wasn't for ductal, just plain old common invasive but it was only due to the surgeon hoking about and seeing a suspicious looking nodule further away from the isolated lump that she took tissue out. I appear to have two sorts going on in the one breast(not like me to be different, much!) She said it was very early cell changes indicating that and that it would take years to break out and become invasive. They seem happy enough with the small lump not to need chemo but it still freaks me out that there may have been a few stray cancer cells circulating round me as we speak. She said I don't need an MRI scan or bone scan, just radio.
I need to ask my nurse on thurs about this HER thingy as I haven't been told. All I've been told is the main lump is stage on, grade 2 and the DCIS is very early cell changes.
My nodes were all clear for which I'm very thankful. I have been told I'll be on Tamoxifen which confuses me slightly as I am 52 and i thought you were only on it if you were pre menospausal? I have no idea where I am as I was happily on HRT for the last 5 years(hindsight,eh?)
Thank you again and best wishes to you in your soon to be end of said train ride(does it ever end??)
Usually the way, Tamox pre menopause Letrozole / arimidex post men.... They all mop up oestrogen which is why after a while you may get some joint pain and osteoporosis type symptoms. If you get any problems with the Tamox ask then if a change is possible and see it is better for you.You news so far keeps getting better, lymph nodes job is to collect any infectious cells so of they are clear, jobs a good 'un - As for the odd stray cell, they'll never tell you you are clear, just nothing found. The fact that your sentinel node check was clear is excellent....
If you were HER2 pos I reckon they would have told you but it's always worth asking, - If you don't ask you don't get eh :-) Same with everything else including treatment, don't suffer at all, there are always antidotes to side effects. As you have found out you get better information from onco team than surgeons, the work they do is brilliant but they live on a dif planet to the rest of us.Makes you wonder if the oestrogen in your HRT acted like a trigger for the ER+ receptor ? Anyone else on the list had HRT and thought the same thing ? G n' J
Hi again G and J
I just hope you're right about the oncology team being a little nicer to deal with. And thanks for the reassurance about my nodes. I know it all sounds good but they will never give you odds or statistics at my hospital and I can't help thinking about all the people I know who know of people where it came back. Normal worries I suppose.
I was told that it probably wasn't linked to my HRT but more to my paternal aunt who had a bilateral mastectomy at the age of 37(35 years ago still alive to tell the tale). I'm not so sure though. Want to get tested for the BRCA gene as I've two younger sisters so there maybe consequences for them.
You sound like you've been diagnosed around the same time as me. It's hard to believe so much can happen in such a short space of time. And great that you also have clear nodes. You are also having radio like me later on.
I am 52 and was happily on HRT for around 4-5yrs and considered myself low risk as like you I don't smoke, only drink occasionally, well within normal weight range and breast fed my son for the first 8 months. Do you have any family history? i have recently found out that my dad's sister had a bilateral mastectomy at the age of 37 due to bc but don't know whether it was in both her breast and she just opted for total mastectomy or not. She's in her early 70's now but sort of estranged from the family so can't really find out much more info.
Do keep in touch..
Goodness, Vicki, that's awful about your husband's family history. It is just something I would like to look at in the fullness of time.
I didn't have a CT at all. My lump was very small, less then a cm. I had a mammogram less then two years ago which was disappointing that it didn't pick it up but they said that it was probably because my lump is at the top of the breast and just outside the mammogram area. I just went in and had the lumpectomy with margin and nodes removed. Both the margin and nodes came back clear which was a huge relief but that's when she said she'd discovered the second cancer in an area far away from this lump but it is early stages of non invasive ductal in situ I think it's called.
I have been sent away for a week while they discuss me at their meetings and I have to consider a mastectomy or more surgery. The more I think about it, the more I am coming round to a mastectomy. I will then have radiotherapy, no chemo and 5 yrs of hormone therapy.
I am also considering going on a dairy free diet having researched it. Have you heard about this?
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2014
what are these?