Please read - food for thought!

[jillybee]

Angel2014,just read your message on this thread.since my last message,had ultra sound,and seroma had capsulated and locculated....gone into pockets,so required surgery,first op not successful,so further surgery,this time with blue dye and cauterising .....still no luck,so next week,ultrasound with drain inserted and steroid injection.....can not believe it is a year last month since my DIEP and still not completely there....and 2 years since Dx.....I hope this finds you well......I must admit,the card and support has been astounding.....thank goodness for our NHS..😀😀

[waveylocks]

Think its worth noting that some breast cancers do not take years to grow. Mine is a grade 3 very strongly estrogen positive and Herceptin positive too. I found it two and half years after my last breast scan....it did not show on the previous scan. This is because it is an aggresive form. So just because you have a scan every three years does not mean to say that nay cancer will be picked up at a very early stage. Mine was 7cms in size!!! And had spread to lymph nodes -luckily no where else!!!

[Nenya]

I was due for screening this year, but went to docs with pains in right. Had felt no lumps. Got referred to clinic, Lo and behold inv lob in left. Screening would have picked it up and I would have been treated this year in any case. Waiting now for results of clear margins and sln. Saved me from bigger surgery as it probably wouldn't have been palpable for a long while.

[Angel2014]

Hi Jillybee,

I'm sorry that you've had to go through all of that and possibly more, sounds like a nightmare.  Sending you hugs, prayers and best wishes xx

[jillybee]

Angel...am OK ish....what they did,September 2013,was do a double mastectomy as implant in breast from 2000 was not right.......it had twisted!!!
Long story ...problems with implants,had to have them both out,8 ops,then a DIEP July last year,now got capsulated Seroma....waiting for ultra sound guided aspiration ,and if that fails,more surgery....;););)

[Angel2014]

Hi Jillybee,

glad my post was comforting, I re-read it and thought it sounded like a rant lol.

I am also part of MDT meetings as part of my job so I know cases are discussed weekly and decisions are made jointly by a team of experts.

Whether the author of the article likes it or not I do consider myself a survivor of breast cancer and I'm glad that medical advancements enable me to say that and will help many others to say it.

I'm sorry you had it twice, I hope you are doing okay now?

[jillybee]

Angel,your post is very comforting.I had DCIS 15 years ago,high grade,white dots all over Breast .....had mastectomy.Then discovered articles on 3 out of 4 people Dx with DCIS could be left,as would not have spread.This time round,DCIS,high grade,a tumour 15cm long,again mastectomy....I haven't gone into types of DCIS .....but,as you say,not just a decision made by surgeon,it is a MDT decision.....feel a lot better,as always had that doubt as to whether it was the right decision......and I was a nurse,sat in on many MDTs......Doh......😁😁😁

[June_BCC]

Hello Angel2014

Welcome to the forums.

Just to let you know that as well as the forums we also have a support helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes,

June moderator

[Angel2014]

Hi

I read this article and agree and disagree with it in parts regarding DCIS.   I can only look at things from my experience, perspective and the medical advice given to me.

I went to my GP in 2014 having found a large lump and within two weeks underwent a mammogram, ultrasound and biopsies resulting in a diagnosis of high grade multi focal DCIS comedo type with necrosis spreading 80mm x 78mm with further microcalcifications in a wider area.  My surgeon was clear that the MDT agreed mastectomy with SLNB was the only option for me and that IDC couldn't be ruled out.  My surgeon was clear that this was cancer, not pre cancerous changes or a risk factor but cancer.

The MDT were clear that with my diagnosis it was a question of when not if it became invasive.

I underwent the mastectomy with SLNB and LD flap reconstruction and received the good news that there was no invasion or spread to lymph nodes.  How lucky am I.

Sometimes I read articles about DCIS and they don't explain that there are different grades and sub types of DCIS that help medical professionals decide what treatment is best for each individual, which for me caused a lot of confusion in the early stages.

To say DCIS can be dealt with easily and less invasively is perhaps a very straightforward way way of looking at it, though medically correct, for me it 

has not been easy and has felt very invasive xx

[Helm]

Thanks very much for the link to this article. I think it is good to have this kind of debate. It's far too easy to accept and misunderstand statistics, and be swayed by the campaigners rather than take a hard logical look at the actual facts, not emotion, surrounding this subject. But that's the nature of any kind of campaigning - charities need to appeal to emotion (and fear) to get people to act by donating etc. I'm not running down charities per se, it's just the way the world is. 

I was diagnosed last year with DCIS and one thing I think is not highlighted enough is that DCIS does not necessarily mean you will die from cancer. As pointed out you could live with it for years and die of other things. This really confused me at first because I read about that but then the impression I was getting at the hospital is that it was cancer and should be treated. I did in fact have cancerous cells in my lymph nodes, so for me there was a risk that this could spread and get worse, so I did have a mastectomy. But I think far too much fear is created partly through awareness campaigning. I'm not saying women should not be aware - not at all. I just agree with some parts of the article regading this. 

I hope that in the next decades science will be able to look back and consider how DCIS, mammograms etc. are treated as rather backwards,because we will have found better ways to address DCIS and prevention (I hope!). I agree that there needs to be more done regarding prevention. We need to understand what factors may contribute to the various cancers. Surely only then can we prevent it, and that is the ultimate goal.

[fudgeincornwal]

Hi all,

I don't post very often or actually read blogs more than once every week if that, too busy enjoying life!!!

However I'm one of those 30% whose cancer returned, altho there was a question mark whether I had Mets from the start.in 2009, IBC which is also usually Her2 and very aggresive..   So on that basis i've survived over 5 years! 

Altho I don't like the 'pink' month  I do do 'the race for life'.    Yes I will be on targeted treatment for the long haul, however as I had suspected mets from the start a close eye has been kept.  It is on the head of my pancreas (very unusual, trust me! )   but very small. Has never caused me any probs.  Full of energy and just about to go on a walking holiday in Mid Wales with my hubby and another couple.  She  was dx in 2007ish with DCIS , returned in 2011 in both breasts and after surgery is now recovered.   Not a natural boob between us!!!  Mine are better!!! lol!

So although the article is very thought provoking and does speak of things that may make people feel doomed please remember there are many many more people surviving long term with mets from whatever cancer they were first dx with.    As for statistics  please remember by the time they reach the public they are very often out of date,

My fav saying is 'Remember life is not about waiting for the storm to pass it is about learning to dance in the rain'   and boy do I dance!!

So please everyone keep smiling and hopefully you are all enjoying the lovely weather! 

Take care all and I'm off to pack!

xx

[Seashell60]

Hello Macky, My ILC was found on my very first mammo - the doctor said that i would not have felt it myself and the radiographer queried a shadowy mass (thankyou!!) - in fact i was aware of my right breast feeling lumpy , and not the one that had the B/C!

Where i live they dont seem to do an MRS, even though i had all the same things done as you had, i had 2 ops (both were to remove the original mass and margins and 2 for the lymph nodes which i had 2 positive but no vascular invasion and they did a clearance the 2nd time. In that case, I am forever wondering that if cancer cells have travelled that far in the lymph system and affected nodes who is to say they didnt take off somewhere else?

It also worries me that when something like this gets into the lymph system it is then free to travel - which is why i queried this yesterday in the Breast Unit as to why we dont get MRI/Ultrasound (the consultant told me that ultrasound would not prove anything!) and that because the NHS is not rich they dont do MRI!!

I feel like i have become a ferocious groper of my boobs constantly checking and feeling them when i think something that wasnt there the day before had popped up! I was never offered anything else than what i had done - no mastectomy just removal of mass and margins. As it came back as Stage II the surgeon said they class that as marginal or borderline or straight down the middle (i presume because there 5 stages including Stage 0).

At the moment i will see the consultant every 6 months and mammo every year for 5 years and they have now moved me from the care of the Onco over to a Specialist Breast Nurse who i have an appt to see in November ~ i am happy with that as i sometimes think the nurses there have more time to listen and they seem to understand what you are talking about! Have a nice relaxing weekend.Cheers, Michele x

[Bluesky123]

Hi Michele,

I was diagnosed with ILC in May this year, found from symptoms - small ridge/lump and skin puckering.

I believe it did show on the mammogram which I had as part of the triple assessment, and obviously also on the ulatra sound. 

After core biopsy and before surgery, I had an MR scan of both breasts and both axillae, and only the one tumour which we already knew about showed.

On SNB it was found that the cancer had spread to one node. I've since had ANC and only this one node was affected, though there was extracapsular spread.

The fact that the nodal involvement didn't show on the MR scan really worries me, as I wonder: 1. About the current condition of the other breast now, and 2. About future monitoring.

It's a huge worry isn't it.

I opted for mastectomy, partly for this reason, but for other reasons as well, and keep thinking about asking for a contra lateral mastectomy for prevention.

The way I feel at the moment I'll have anything surgically removed it it prevents a reoccurence anywhere!

Good luck xx

[Seashell60]

Hi all, I don't know whether to be scared or not in relation to this thread. When I read the original posts about screening I remember that when I turned 50 in 2010 it meant I would be now be on the mammogram screening list. When I didn't hear anything after my 51st birthday I rang our local screening place and they said that the appts were being done by GP practices and that they were currently working through the patients in a GP practice across town and to wait until I heard.

So when I did receive the invite to the screening at our local mobile unit I was 52 and 1/2 (Sept 2012 by this time). I was diagnosed in Oct 2012 and subsequently have been having treatment since then and am currently on the Hormone treatment and waiting to see the Breast Surgeon this month. What they did tell me was that if I had the mammogram done at 50 in 2010 they probably would not have seen anything and if i had the next one after 3 years in 2013 it might have been a different outcome. So I consider myself lucky in that respect.

What does worry me a lot is what I have read and been told about Invasive Lobular cancer which i know had a habit of not showing up clearly on some mammos and that some people can have ultrasounds or MRI scans to check. Would I be able to ask for these tests or does it depend on where you live? Mine was Grade II Invasive Lobular and the consultant told me that i would never have felt it myself and it showed up as a dark shadow and the radiologist was diligent enough to query it (thank goodness!). And I also have read that this type of cancer can also jump to the other breast, so I am jittery about all of this and wonder why a mastectomy is offered to some and not all of us with the same type of tumors? I don't know how to approach this fear i have when i have my appt this month as i know that some specialists do not like to be challenged on things. Help!!!!

Cheers, Michele x

[Jo1]

Interesting reading about your experience, poemsgalore. I too had invasive lobular cancer and have been told and have in various places that lobular cancer can't usually be seen on mammograms. It was for that reason that I opted for a mastectomy - I simply couldn't risk having it again.

I had a slightly 'different' area on that breast at my annual check-up last year (I had breast cancer in the other breast 5 years ago, so I have mammograms and annual check ups)), but it didn't show up on my mammogram. I was assured by an experienced doctor in the bc clinic that it was perfectly OK and nothing at all to worry about, and to contact my GP if there were any changes - and that's what the letter to my GP stated and I had a copy of it.

There were no changes, but the different bit was still there this year and it again didn't show on my mammogram. I again drew the attention of the surgeon to it - (I had the boss this year) when he arrived cheerily assuring me that my mammogram was clear, so no worries. He went off to get my notes, examined me and told me I needed an ultrasound and possibly core biopsies. Little did he or I know that there was a wait of 11 weeks at our hospital at that time - in March this year.

Jo

[parky]

A very intelligent and interesting article. It has articulated some thoughts that I've had already as well

as raising others.  The comments at the bottom of the article are worth reading too.

Thanks for posting.

[Maddog]

Could not disagree more, where I live they introduced mammograms at age 47 and I was called for one - everything was fine. Then went for my second age 50 - a dense patch was found when compareing to my previous mammogram. You could not feel the lump as it was too deep. Had the lump removed with a clear margin and 3 lymph nodes which were clear. Had Radio and am now on Tamoxifen. There is no way I would have felt the lump so am very thankfull I got the Mamm at 47 .

[barbersdrove]

I found this article very interesting, thank you for posting it.  It has alayed some of my concerns for my daughters.  It's also made me feel surprisingly at ease and better informed for my discussions with my consultant.

[cornishgirl]

Hi poemsgalore,

I think it is something that you will never know for sure , breast cancer cells can take many yrs to be able to be detected and felt as a lump , on the other hand a grade 3 cancer can grow in size quite quickly once a lump has been found, I know my first grade 3 tumour (once I found it grew very rapidly ).

I think the main point to be made in the screening debate , is that finding DCIS on a mammogram can be dealt with very easily,  DCIS is considered curable and has a near on 100 % cure rate, meaning the earlier a potential problem like DCIS is detected , then far better the predicted outcome , DCIS  also requires far less invasive treatments, potentially saving women the need to go through future chemotherapy and other invasive cancer treatments . But the biggest benefit of dealing with any DCIS if picked up early on a mammogram, is the vastly improved survival rate, certainly in comparison to someone who has been dx with an invasive breast cancer.

At the moment  there are No tests available to say which DCIS will or will not cause a person a problem in their lifetime , so untill such times as there is a test available to be able to know which DCIS will go on to cause a person harm or not ,then I think the screening debate is futile, (but that's just me ) , Knowing what I know now about BC , & having gone through cancer treatments twice, and will still never know like anyone else here with invasive breast cancer "If I am cured untill I grow old and die of something else"  I certainly wouldn't be prepared to take the risk of either non screening, or a wait and see approach if DCIS was detected after mammogram screening.

That just my view though, and I guess hindsight is a wonderfull thing .

L xx

.

[poemsgalore]

Cornish Girl,

I understand what you are saying, but my tumour was ductal invasive, lobular (that's what it says on my report) and 3cm grade 3. It may have been seen on a mammogram 21/2 years later, but I will never know that for sure. So I am assuming it wouldn't have. considering there was nothing there at all on the previous mammogram, I'm taking a good guess that it wouldn't have been big enough to 'see' on the missing mammogram.

poemsgalore

[Lola65]

Speaking from a purely personal point of view, my routine screening has hopefully saved my life, and certainly my boob! I was 64 at the time, having had 6 previous screening mammograms, all clear. The 7th one picked up a grade 3 invasive ductal tumour with surrounding DCIS. The invasive tumour was 15mm. It was not palpable, and even the radiologist consultant couldn't feel it whilst she was doing the ultrasound scan, and she knew exactly where it was! Because it had been caught so early I was able to have a lumpectomy rather than mastectomy and my lymph nodes were clear with no evidence of vascular invasion. Goodness knows what might have happened but for that screening.

[BlackSwan]

But the article isn't just about screening, it is about many things:

Some cancer charities spend large amounts of money on "awareness" and only a tiny percentage on research.

The use of emotions and fear to channel funding rather than focussing on what will actually save lives. 

Excessive focus on "good news"/feel good stories and the marginalisation of women with metastic breast cancer

As far as I know, the points in the article about DCIS are correct.  Invasive cancer is a different matter.

An excellent article. Very thought provoking, 

Thanks for posting. 

[cornishgirl]

Hi jenann,

Thanks, I had read the new NHS screening Leaflet online, I still "personally" think until such a time comes when there is a reliable "Test" available to show which cancers "Will "or "Will not" kill someone in their lifetime then it is a bit of a pointless exercise, and the new leaflet will likely act to scare and discourage people from attending breast screening ,therefore potentially putting more peoples lives at risk. 

Personally "if" there is something in my breast which shouldn't be there ,whatever it is ,I want it out and dealt with ,otherwise it would be a bit like playing Russian Roulette with my life , and I'm not a gambling person lol.

Everyone has a choice at the end of the day, whether to attend screening or not, and I guess its up to each of us to take responsibility for our own choices with our own health.

That's just my view though.

Linda 

[Guest user]

Re. breast cancer screening, the new NHS breast screening leaflet gives the information for treatment in the UK now.  Go to the BCC Home page, down to the BCC Blog, 3rd. article down.

[cornishgirl]

I reckon the screening debate will go on and on ,it drives me potty to be honest, I expect before too long there will be  debates about cervical cancer over diagnosis and everyone will be discouraged from having smear tests ., anyway  just as a balance to the American journalists own personal view in the article ,here is just one critique on breastcancer.org written by Daniel Kopans, M.D. MGH.

"

Daniel Kopans, M.D. MGH

..

Ms. Orenstein’s eloquent description of her views on breast cancer screening unfortunately, contains much misinformation. No invasive breast cancer has ever “gone away on its own”. The New England Journal of Medicine has ignored numerous experts who have called for the withdrawal of one of the papers she cites that falsely claims mammography screening causes over-diagnosis. 1. The authors had no idea who had mammography, nor which cancers were detected by mammography and no scientific validity. 2. Scientific studies show that mammography leads to little if any overdiagnosis. 3. They mixed invasive cancers with DCIS to dilute and mislead. Ms. Orenstein raises legitimate issues about DCIS, but finding invasive cancers when small saves lives. 4. They estimated incidence from a 3 year period soon after Happy Rockefeller and Betty Ford had breast cancer making it completely unreliable. 5. 40 years of data prior to screening show the rate increasing at 1% per year, four times the estimate used by the authors. Since 2006 the incidence has returned to a 1% per year increase confirming its validity. Using this correct number and excluding DCIS, there has been NO overdiagnosis of breast cancer. The authors used the wrong extrapolation and their conclusions should be withdrawn.

Women need to be provided with facts-not the fiction that some are promoting. Mammography screening is not the ultimate answer to breast cancer, but it is here today and saving thousands of lives.

April 29, 2013 at 6:07 p.m. Recommended4"

I would personally have to agree with him, but that's just my view.

Hi Poemsgalore,you say " I found my cancer 2 1/2 years after this 'missed' mammogram would have taken place, so it wouldn't have been discovered then and another mammogram would 't have happened before I was DX. I would still have found it myself. ."

How can you be so sure that your  cancer wouldn't have been picked up on the missed mammo? Cancers are normally present for a good few yrs before they are able to be detected as a lump, a single cancer cell in some cases can take 10 yrs before if can be felt as a lump . " I agree when it was big enough  you would still have found it yourself, as I did my first breast cancer (But I was below screening the age) I don't know if you had any DCIS surrounding your tumour like I had  ,but early dx of DCIS, picked up on mammo  ,is considered "Curable" therefore requires far less invasive treatment and 10 yrs survival rate is almost 100%.

Linda 

..

[poemsgalore]

Well, I read it, and I really don't know where you get the impressiion we're all doomed from. All it is saying really, is it worth having a standard screening test for the over 50s as most women (me included) find their cancers themselves. I know a lot of members on here are under the age for the breast screening. Yet here they are, found their lump and are having treatment. I'm 62 and was part of the screening, but because of other health problems at  least as serious as breast cancer, I missed a mammogram. I found my cancer 2 1/2 years after this 'missed' mammogram would have taken place, so it wouldn't have been discovered then and another mammogram would 't have happened before I was DX. I would still have found it myself. 

[jayney234]

I read this and wished I hadn't.  It paints a very depressing picture of possible survival and  I don't think it will help anyone who is going through treatment to read this as to be honest it basically says most of us are doomed.  Great.

[Guest user]

Thank you for posting this. It raises some very important points that deserve further discussion.

[Guest user]

This recent article 'The Problem with Pink - Our feel - good war on breast cancer', is well worth a read.

It addresses many aspects of breast cancer, from 'early detection' to 'low funding for metastatic disease research'.

Having read many times over, on various forum threads, posts about DCIS & mammograms, BC 'awareness', concerns over BC spread, 'prophylactic mastectomy', lack of focus on & support for secondary BC , etc. - this article makes you think and provides facts about BC in 2013.

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=1