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radiation after lumpectomy
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radiation after lumpectomy

had lumpectomy on feb 6th for dcis comedo high grade with microinvasion--surgeon did not check lymph node--now i am concerned that this may have spread--radiation to start a;pril 9th and don,t know what to do--proceed or return to surgeon and have a mastectomy tumor was 1.7--also concerned abour radiation side effects on left side--age 61 and smoke--anyone out there similar cirumstances--this whole situation is making me crazy and can't beleive how i am flip-flopping between decisions--
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127512_tn?1193745816
I would dump this surgeon and get a second opinion. I am not a doctor but I certainly think you should have a sentinal node biopsy to check for speading to the lymph nodes. Not to bad of a surgery. I can't believe they haven't done one already especially with the microinvasion.  I would think this would need to be done before radiation begins. Please get a second opinion. Go to breastcancer.org and ask the girls on the discussion board there what they think. A great site with lots of info. Please come back here to let me know. I wish you well.
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Avatar_n_tn
i went to see the surgeon today to ask abouth this and he told me he didn,think i needed to have one checked because it was in situ--apparently the hospital in barrie doesn,t do these as standard procedure--i think i want another opinion about this so will check with my familyu doctor and see if he can help--i am in canada so health care is for the most part covered so not an issue-thanks for responding
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Avatar_f_tn
I live in England where we also have socialised medicine, but must say it has been exemplary, probably because my nearest hosptal is a Centre for Breast Care Excellence.

I had a non palpable invasive tumour (2 cm) which was found on normal 3 yrly mammo - thank goodness I went. I had a lumpectomy, sample node removal . (3 found cancerous) and went back a month later for total axillary removal one more as found to have bc/. Then 6 x FEC chemo, and 25 rads. I smoke too, and had no problem whatsoever wih rads - just a little pinkness towards the end. I am fair skinned and burn easily in the sun, so was surprised. It is an easy treatment compared to chemo - except for the daily journey to and from the hospital., normally a 3 hour round trip, but I had volunteer drivers and this could pan out to 6 hrs on bad days when we had other patients more ill than me (dialysis esp.).  I just took a book and sat in the back of the car - usually falling aleep. You will probably be very tired, but this is preferable to not havig the treatment I feel.
Good luck. Liz.
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hi ladies--i did find out my er & pr status both negative--apparently not the best -alos sterotactic biopsy said microinvasion--final surgical pathology did not say that --just said ductal carinoma insitu--surgeon said if microinvasion was there it would say so--being a doubting thomas i have asked for a second opionion--if there is any invasion of any kind i need a node biopsy and radiation will have to wait--gald to hear that someone my age didn,t have any horrible side effects from it--all you read about is scary for the most part--i don,t know how people seem t cope with this so well--i am back to work to try and keep my mind off it and tonight i ventured out to the local casino and blew 300--won't be telling hubby about that anytime soon--best not take up gambling for stress relief -i,m apprently not good at it--bonninclyde how did you make out with your doctor--sincerely hope all is well for you--forgot to ask what does her2 mean--it that the genectic testing--i haven,t had that done but probably should--i hate running between all these doctors--i still fell really healthy so it,s hard to think of myslef as sick--well should get to bed--goodnight-hope to talk to you soon---bonninclyde--tried to get onto breastcancer.org but don't have java on my computer--i tried to download it but couldn't--i'll have to get one of my nieces or my daughter--i'm technically challenged---sweet dreams
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Avatar_f_tn
Hi tajj-
boninclyde is absolutely correct - microinvasion means the cancer has spread outside of the ducts. However, yours seems very small, but, there is the potential it could have already spread to the lymph nodes, I think your surgeon is negligent in not doing this already. You really do need to know the lymph node status, as this affects the adjuvant treatment you need - chemo, rads etc. You also need to know your ER/PR status, which if positive, means some kind of hormal treatment after possible chemo and rads. Tamoxifen if you are pre-menopausal, and Arimidex (or one of the aromasin drugs) if post-menopausal, as I am taking.   In addition (sorry to bombard you with all this) you also need to ascertain your HER2-neu status. They didn't do this test when I was dx in 2003, but after reading about it on various bc forums, knew I needed it tested. I had to go privately (some $300) as our socialised medicine programme in England would not pay for bc patients to be tested retroactively, when they decided to fund this in 2006 for all bc patients. Luckily, my HER was negative, so I don't need Herceptin. My Onc said my ER+ and HER- status was a very good prognosis, despite the cancer already having spread to my lymph nodes. They didn't do my PR status, but I don't think this is important - stand to be corrected though, by more knowledgeable ladies on here.

I only found out I had DCIS (ductal cancer in situ which some bc surgeons think is pre-cancer) both comedo and cribriform, intermediate grade, when I asked for a copy of the two pathology reports after the lumpectomy and total axillary removal, just before seeing the Oncologist. I did ask my surgeon afterwards if he had removed the DCIS,along with the invasive tumour,and he said "yes", but nobody thought to tell me I even had this. Guess they thought an invasive 2 cm tumour was enough to deal with. Not for me though - I can deal l with what I know, but get anxious when I don't have the full story.

I am sorry if I have overloaded you with too much information, but I only found out this stuff from detailed research - from other bc patients, not the doctors, long after I was first diagnosed.

At my hospital (and they all have different protocols, even between different doctors in the same hospital) they have a "tumour board meeting" after surgery(ies) with all concerned doctors - surgeon, pathologist, oncologist and radiologist, to determine the best course of treatment. Any tumour 2 cm or larger, they advise chemo,( 6 x FEC for me)  which I had as well as radiotherapy for 5 and a half weeks.  As your DCIS was below this figure, I would guess this is why they have not advised chemo - but I would ask why!

As Boninclyde advised - please seek a second opinion - it is your life, not theirs and except for my bc surgeon, most of my doctors just treat us as a statistic.

If I can be of any more help, having gone through a traumatic journey these past 4 years, as well as dealing with chronic Crohn's disease, please e-mail me at: ***@**** - I am 62 yrs, so can empathise with your problems.
On the up side, my bc is in remission - just had an annual check. Pity about the Crohn's though - monthly blood test has just thrown up something wrong my Mean Cell Volume - too high (which I don't understand, even after looking at the internet) - and recent DEXA scan has shown significant bone loss - due to steroids for Crohn's and Arimidex for bc. Seeing my GP Friday to discuss and sort out some medication. Gosh, at times I feel between the devil and the deep blue sea - but still get up each morning with a smile on my face, glad to be alive.
Take care, and please, try and get a second opinion or at least get your current bc surgeon to do a sentinel biopsy.
Liz.
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127512_tn?1193745816
Thanks for chiming in. I did not even think to mention to her about the pr, er & her2 status.  I do hope she gets a second or 3rd opinion. Hope you find nothing wrong and I wish you well.
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127512_tn?1193745816
In your first post you stated you have DCIS comedo high grade with microinvasion. That is not in situ.I am not a doctor but it sounds like you had some small invasion of cancer in the breast somewhere. Maybe you could ask where the microinvasion was. Mine was very small 0.09mm but doctor still tested my lymph nodes. But do get a second opinion. Again I wish you the best.
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127512_tn?1193745816
So glad you were up to date on that info. I myself did not know how to explain it. And yes tajj please let us know how you are doing.
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Avatar_f_tn
Hi tajj,
HER2 stands for human epidermal growth factor receptor 2. HER2 is a protein that helps control how cells grow, divide and repair themselves. The HER2 gene directs the production of special proteins called HER2 receptors.
Each healthy breast cell contain 2 copies of the HER2 gene, which helps normal cells grow. Sometimes a cell may have too many copies of the HER2 gene, which may lead to too much HER2 protein (this is often HER2 over expression). Too much HER2 protein may play an important role in turning a normal cell into a cancer cell and in how aggressive the cancer may be. Women with breast cancer that has too much HER2 protein on the outside of the cell may be less likely to respond to certain treatments. The drug Herceptin is used to stop the HER2 over expression.

As far as I know this is not an inherited genetic fault - the ones I know of in breast cancer are the BRCA1 and BRCA2 genes, which often run in families. There is no treatment I am aware of.

Hope this clears your questions on HER2 up - please come back if you have any more.
Liz.
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Avatar_f_tn
Hi there - it was very thoughtful of you to ask how I am doing - fine really as far as bc goes, just got lymphodoema in my breast but it is not painful.

Been to see the GP today as my last blood tests flagged up a couple of problems - white cell count too low and red cell count too high. He spent 30 mins explaining the problem to me. Apparently in a "normal" person, i.e. someone without an auto-immune problem like Crohn's, the values would be seen to be out of the normal range. However, with an auto-immune problem, where I normally make too many white cells which attack my own body, the chemo methotrexate, which I inject weekly, reduces my white cells, and it looks as if my dose needs tweaking. I need to see my gastro to get this done as GP's can't prescribe chemo drugs in England.
The high red cell count means the cells are grossly enlarged as they come out of the bone marrow - clear as mud, eh? He is quite intelligent for a GP (gosh, that sounds so patronising, but I have had so many GP's in England and Spain,where we lived for 8 years, that were absolutely clueless about Crohn's,) that it is comforting to have a local doc who knows what he is talking about. He said they will keep an eye on my bloods - I have them done monthly.

The other problem was the DEXA bone density scan I had recently which shows a significant amount of bone loss since last done in 2001. I am not surprised, neither was he, since I took steroids (prednisolone) for some 35 yrs until I found methotrexate on the internet and got my gastro to prescribe if off label, as it is not licensed in England for Crohn's. The letter I had this week from my bc surgeon, who is also monitoring my bones, said that Arimidex doesn't help and I can expect further bone loss.GP asked if I wanted to continue Arimidex and I said a definite "yes", although I understand the risks to my bones.  Gosh at this rate I am going to be a twisted old lady - GP laughed and said he thinks I wiil have a long life as I have such a positive attitude to chronic illness. He has prescribed a bisphosphatase (Alendronic acid)  to be taken weekly, along with twice daily doses of calcium and Vitaming D. So, I feel really good tonight. Done all I can and the rest is in the lap of the gods.

Got a new cleaning gal start today to do some of the heavy work around the apartment - which not only has floor to ceiling windows in the lounge and terrace balcony area, but floor to ceiling mirrored cupboards in each room for storage. Last time I tried to clean them I fell off the chair and broke the radiator in my bedroom, so felt some help was needed. She is decidedly weird, says she is half American Indian - was adopted soon after birth, and has two teenagers called Destiny and Cherokee. She came highly recommended by one of the Fort's maintenace guys, but he did advise she has a history of mental illness and drug problems, but she cleaned the apt beautifully. That's all that matters to me and she seems to have a heart of gold.

Well, off for an early night as I have a changeover at our holiday apt in the Fort and need to be up early. If you want to see this unusual place I live, just google "Fort Picklecombe" and you may get a surprise. You can also see it on Helpfulholidays.co.uk website, ref R374. We bought this studio apt some 8 months after I was dx with bc, in case it got terminal, having already spread to my lymph nodes and my husband didn't want me going into a nursing home or hospice. Thought we could put a home carer in there. As it luckily turned out, I am fine, so we now let it through HH and it has been a wonderful experience for both of us, having met so many different people, some of whom have become good friends. My 78 yr old disabled husband completely refurbished it with a new kitchen and bathroom, new electrics and plumbing and I had fun doing the interior. It helped us to focus away from my health problems and considering the isolated position we live in - the sea on one side, a huge 600 acre deer park with the National Camellia Collection on the other, has brought a lot of outside interest into our rather boring lives.

Thank you again for caring, feels good "to talk".
Love,
Liz.
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127512_tn?1193745816
I have read and watched you post for quite some time now and you must be a very strong women. Just curious what came first your bc or crohns. I will share my aunts situation not to scare you just to provide you with more info so you know to keep watch. For 8 years she was dianosed and treated for crohns. She now has pancreatic cancer. They admittingly said they had treated her for all those years for the wrong diesease. So keep check behind your doctors.
I have had hives every day for 5 1/2 years (they don't know why stress or chronic) and I get steroid treatment quite often and have the same problem with bone loss. Maybe walking could help some with your bone loss. Yes you have to keep movong.
Mental illness and drug problems. Hide the gold. No, l'm  just kidding,  I know you have to give some people a chance sometimes but don't turn your back or blink for to long.
Wow sounds like my place to live. I am going to the site now. You better hope I don't want to come for a visit. We'll chat more later.
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Avatar_n_tn
like boninclyde i am getting off here and going straight to have alook at your
unique home--sounds wonderful--do you live htere full time or do  you lease it out? the cleaning lady sounds a good idea even if she has some issues don't we all-enjoy talking to you two--will be back after i view fort picklecomb
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127512_tn?1193745816
lad to know you have followed up enough to be sure it is crohns. I am so sorry about your friend. I don't have many. I stay to myself alot. I have been let down my whole life from family and friends so I guess that is why I just stay to myself.
I must say the fort is the most beautiful place I have seem. Seems very private and my kind of place. There are so many places I would like to travel but I am scared to fly. But after breast cancer nothing seems impossible. Or well I actually have panic and anxiety attacks that control my life. Every movement. I must say you are so very lucky.  The place seems so much like a fantasy and history behind it, wow.  I hope you take in the views and have a wonderful day. Thats what I would spend my day doing is looking at the views and well maybe some fishing. I love to fish. A shame we can't exchange e-mail addresses here.
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Great to hear from you both - yes we live here permanently (much to my distress as I am a townie) but have a holiday apartment here also, that I just adore doing. Not like doing bed and breakfast, just a hectic day on a Saturday when I have to do the changeover.Tthe vast majority of visitors leave it clean and bundle up the bed linen, but have to do a bit of spruce up of the bathroom and kitchen. I guess we must have had some 100+ guests at the studio apartment, from many walks of life, and some have now become good friends, on their 4th and 5th visits in two years. I cannot believe after a high profile job working for the CIA, I am now a "housekeeper" for a holiday flat, but life does throw some unusual curves.

Bonine - your latest post struck such a cord. Yes., I got Crohn's some 37 yrs ago, breast cancer 4 yrs ago.Don't know if the two diseases are related., but there is a suspicion I am a a Jewish Ashkenazi Jew from my mother's side and all my numerous doctors have asked is I am Jewish - I don't know. Both Crohn's and breast cancer are very prevalent in Eastern European Jews. There is lots of information on this on the internet.

know absolutely, after many biopsies, in England and America, and a laparotomy, that there is no dispute as to my dx of Crohn's, but some 4 years ago I met a young Scottish woman of 37 yrs old, living in San Francisco, on the American Crohn's and Colitis interactive website, now defunct. She said she thought she had Crohn's, but now I wonder, as I never got so ill as she did.  We "talked" perhaps twice a week, by phone or e-mail and hoped to meet up this year in London. Heather went on to get a pancreatic tumour, and sadly died in Jan this year at 41 yrs old and leaving two young kids. I am still dereft at her passing - she was so articulate and intelligent, made me feel like a moron, but we gave such comfort to each other with our Crohn's problems. which is a taboot subject, like having the bubonic plague. No-one understands it or wants to know the details, so you feel absolutely isolated.  Weird that we both went on to get cancer , although different. Does make you wonder about DNA and genes.
Thanks Bonini for the heads up about hiding what little gold I have. Lost most of my jewellery to the first of 14 burglaries we had when we went to live in Southern Spain. I will put my few bits in a drawer! The gal did a great cleaning job and is coming back next Tuesday as her younger daughter was hospitalised Thursday  The maintenance guy here who recommended her said she is a fantastist.  Time will only tell.

Hope you both enjoy the Fort Picklecombe site and one day we can welcome you here.
Love. Liz.





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Avatar_n_tn
my husband and i spend quite some time enjoying info about the fort-what a wonderful place to live--you must enjoy it even though your are a townie by nature--was this your idea or your husbands--probably a very prudent investment--don't imagine resale would be much of an effort--i'll never see it because like boninclyde i haven't flown in over ten years--developed a fear after a nasty flight-although being ill has changed that some--i actually though about gong to mexico with friends this week--too late to book now though--do you have children liz--wondered if they had also developed or had symtoms (symptoms) of crohns--boninclyde coudl visit either of us--i am only one block to georgian bay and we also like to fish--i doubt that victoria harbour ontario is on a map --too small--the next town--5 minutes is midland--really pretty but certainlynothing to compare to your fort liz--my husband is a history buff so this was right up his alley--bye for now--
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Hi tajj -
been a bit busy these last few days so haven't checked into my usual bc and gastro sites.

So pleased that you enjoyed viewing some of the Fort Picklecombe websites - it is really an amazing place. Long story as to how we came to live here, as neither of us are from Cornwall. We lived in Spain for some 8 years, where we had an English neighbour who owned an apt here who invited us for a short visit about 14 yrs ago and my husband instantly fell in love with the Fort as it has its own small harbour, where he could keep a 24 ft sailing yacht and a small motor Dory. We used our friend's apt many times before we finally our first apt here, as I was ill with Crohn's and Leishmaniasis that I caught from an abandoned dog left outside our villa in Spain and the docs there advised me to go back to London, England for specialist treatment. We stayed in England for some 7 months whilst i got it sorted, finally at the Hospital for Tropical Diseases - I seem to catch or acquire a number of rare diseases, probably due to my genetically compromised immune syste.

We initially bought a 1 bed apt at the Fort as a summer holiday home, after buying a 2 bed apt in the town centre of Northampton, from where we had retired to Spain. Took us 3 years to sell the villa in Spain, and is the only property we have owned that we lost money on - I never wanted to go there in the first place!

I foolishly thought we could have the best of both worlds - town centre apt where all our friends are, and the peace and fresh air of living right on the sea, with Ted being able to get out onto the water even if no wind was blowing.
Unfortunately my twin brother got a non operable brain tumour in 1995 and I felt I was needed to go and help nurse him when his wife was abroad in continental Europe on business - so my husband came down to the Fort and I made my base in Northampton (about 60 miles north of London).
And, Ted has never left! My brother died died that year and this beautiful place was a great solace to me. We then decided the Fort would be our main home and purchased a much larger top floor 2 bed apt. When I got breast cancer in 2003 we purchased another small studio apt here,ostensibly as a place to put in a carer if my condition became terminal - the bc had already spread to the lymph glands when I was dx and my husband was adamant I would not go into a nursing home or hospice and would be cared for at home. Fortunately, that has not happened, although I am aware it can recurr. I don't dwell on it.

Although disabled, my husband gutted the studio, with a new state of the art kitchen and bathroom and re-wired and replumbed the whole place and I talked him into letting it through a holiday company. It is absolutely beautiful, as evidenced by the number of return visitors - some are on their 4th and 5th visits, after only 2 years of letting. I fnd it gives me a focus in life, is not overwhelming like doing B & B, and  as a people person, love meeting old and new guests every Saturday. Luckily, my health has been good and I have managed to do the turnover on a Saturday (cleaning, changing beds and making a cake each week) - loved every minute of it.

I am a bit of a property enterpreneur having bought some 8 apts in Northampton, 3 of which we still own there, which are managed by a company in that area, but I have no hands on involvement, indeed never been there for 4 years due to ongoing health problems.  Property prices in the UK are ridiculously high - we paid
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