radiation or masectomy
radiation or masectomy Hi I’m 46years old and had a mammogram on 3rd January, which showed a star shape I returned to the hospital 9 days later to have biopsies. 2 weeks later I returned for results and was told no cancer or any operation at this stage, but I did have LCIS and they wanted to test it further. 2 weeks later returned to hospital and was firstly told I needed a mastectomy (World stopped for split second) to which i replied would they be taking both, as they weren’t having one without other! The doctor then went on to explain the reason for the mastectomy was because the outer shells of the LCIS were starting to crumble and both breasts were unstable but I needed to go into hospital to remove more tissue to know exactly what was happening. 2 weeks later went in for day and they removed most of the growth. 2 weeks later went back for results doctor walks into room and states I have grade 1 cancer!(world definitely stopped) after conversations with breast care nurse I discovered this was tubular ductal invasive cancer grade 1 stage 1 about 8mm which I realise is a very good prognosis if any cancer prognosis can be good, but they hadn’t got a clear margin on a small section. I haven’t gone back into surgery for this removed as going to have mastectomy so I thought. Went into surgery again 2 weeks later for sentinel node biopsy, which thankfully were clear. Then the fun begins, as my consultant wanted me to go and see somebody who he claimed was more experienced as they were finding it a complicated diagnosis due to it being discovered so early. The new consultant now wants me to go for lumpectomy to get clear margins radiotherapy and tamoxifen as opposed to mastectomy/ reconstruction using inflators and eventually implants and tamoxifen and has stated that on the test carried out they are really sure that if i was to grow another cancer it would definitely only ever be a grade one which will never kill me!!! Has anybody else experienced this type of prognosis as I am now so confused about which road to take where as initially I was so adamant I would have mastectomy and nobody would talk me out of it.
radiation or mastectomy Sorry you are going through such a worrying time. I am alarmed by your doctor’s remarks that if you ever have another cancer it will also be a grade 1 - does he have some divine knowledge that no-one else has?
I can hardly believe his response, which is at best most unprofessional, but at worst, almost actionable. How on earth can he know how your or any other one’s cancer will develop in the future? He must live in cloud cuckoo land, or think he is God.
I would go for a lumpectomy to get clear margins - once you have that status, you can review your options. I would get another surgeon if I were you. I don’t understand your need for a mastectomy, when you have a route otherwise. As your cancer is grade 1, you probably don’t need chemotherapy, and with radiotherapy, you have a great prognosis.
I would do a lot more research if I were you, before taking the mastectomy route. Ask him why this is necessary?
Liz.
Dear heyho I am sorry to read that you are feeling so confused about your diagnosis and treatment options. I would like to suggest that you may wish to contact our helpline on 0808 800 6000 where you can speak, in confidence, to one of our breast care nurses or helpliners who have had experience of breast cancer who will be able to offer you support and information in order to help you to make an informed decision regarding your care.
The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
Kind regards
Forum Host
Breast Cancer Care
Similar situation Hi there
Wow what a ride you’ve had recently! Your diagnosis and suggested treatment sounds very similar to mine. If I tell you a little about it, perhaps that will help?
I’m 39, found a small lump near left nipple back in September last year. After the consultant telling me that she was sure it was benign, I then had an aspiration and 4 core biopsy which came back that it could actually be possibly cancerous. I then had a lumpectomy to remove the lump (20mm) and a week later I was told that it was a Grade 1 Breast Cancer (the world did stop for me too at that point!). Under my surgeon’s reccommendation, I then had another op to remove some more tissue from where the lump had been and also had 6 lymph nodes taken out from under my left armpit… Luckily it was all clear and it seems as if it hasn’t spread - which is great news.
My treatment plan has been to take Tamoxifen once a day (for five years), have a Zoladex injection once a month (for 2 years). I had 5 weeks of Radiotherapy which finished in March, and that wasn’t as awful as I was expecting. I decided not to go for chemotherapy as well, as this would only have improved my chances by 1% with my diagnosis.
I’m feeling better each day - almost back to normal, and am confident that I have had the right treatment. The only side effects I’ve had from Tamoxifen is the odd hot flush (or power surges!), but they only last a minute or so.
If you want to talk through what to expect in whatever treatment you decided, just let me know. Also do use this site as it has some fantastic, useful information, which really helped me.
Good luck and I’ll be thinking of you.
Love
Lynne x
It’s a very individual choice I was grade 2, I was given a choice between mastectomy and radiation. My oncologist said that many younger women fare better mentally with mastectomy, which is in fact what I opted for (skin sparing), although I feel that his comments were sweeping general statements.
I have met young women who have been very anxious not to loose their real breasts and have opted for lumpectomy followed by radiation and have been very happy with their choices. Sometimes the radiated breast shrinks a little over time but I believe it is possible to get the other breast lifted so that it is a better match should this happen.
I myself am absolutely delighted with my implants, ( I kept my nipples), and I definitely made the right choice for me.
HI thankyou so much for your reply as our journeys do sound very similar it has taken me a long time to post anything on this site as i have been really nervous doing it even though i am constantly reading other peoples experiences and in some ways feel the site is more helpful and reasuring than general imformation even though i appreciate we need both. i think i feel slightly giulty becuase i am taking so long to make a decision as i know that there are so many poorly people out there and in such a worse situation than myself.i really dont mean to moan and winge. when first oncologist advised a masectomy (i wasnt given any other choices but i also realise maybe i wasnt ready to listen either) I had no problem with this as long as i was cancer free, but i was really upset about tamoxifen as i would have no control over the effects of this! i was sent to second surgeons as diciplinary team didnt know what to advise. second surgeon has almost made me trivialise that i actually have cancer even though i know he has been honest and truthful with me. he just really does not want me to have masectomy his disiplinary team also cannot decide what to advise! i realise that treatment can depend so much on the oncologists own views and feelings and each are trying to do their best for the patient. they say i am too imformed now so why do i not know which road to take. what is zoladex though obviously not that informed.
Zoladex information Dear heyho
Here is a link to a Breast Cancer Care factsheet about this treatment:
breastcancercare.org.uk/docs/zoladex_sept_06_0.pdf
Kind regards
Forum Host
Breast Cancer Care
thankyou so much for you reply as it is good to know you are pleased with the masectomy i had no problem with the masectomy when i was initially told i needed one but i have actually been made to feel as if i will be masacreing my own body doing this and they are taking the view that i am electing to do this to myself now as i have been told i dont need to by second surgeon. now vanity has kicked in and i feel that once i have had rads i have spoilt any chance of implants for the future and they have not ruled out a masectomy in the future but have said i will be older then! all i want is what is best for me now and i am trying to desperately find out where this research has come from that says in the future my own body genetics are saying i will only grow a grade 1 cancer. god i am confused ahhh!!! thanks for listening. by the way i really am not a negative person and always try to find a positive out of every negative it was a free boob job even though i had had a reduction 18 months ago which highlighted all this hey ho onwards and upwards as we say bye for now
hi thanyou for your reply i think you are maybe expressing some of the frustrations i am feeling myself and am to scared to admit to. i think maybe i should try and explain some more it is the first surgeon who advised the masectomy and it is the second surgeon who really doesnt want me to have one as apparently they have discovered my cancer so early. he has said that the tests they have carried out on my own body genetics have shown them that i will only grow a grade one in the future ond because i will be closely monitored they will discover that early as well obviously i am not totally ok with this as i cannot find anybody else who is aware of this research. i am going back to my 1st oncologist on wednesday and he is going to go through everything with me and hopfully we can clear up a few things but in all fairness both consultants have spent alot of time with me and in their own way both want the best if there is one thing i have learnt in all of this is that there is no definit treatment for any cancer as the all differ and even though all consultants have to follow guide lines alot depends on the consultants own veiws. i will let you know the out come on wed if i find out about the research. apparently my survival rate will be the same for both options
mamaprint - gene expression profiling hi lizziecee
thought you might be interested in looking up ‘‘mammaprint’’ it is a system that gives a gene expression profile of a tumor.
i have only just found it and obviously need to do more research and ask lots of questions (how come we always make discoveries at weekends!!) but i have got a little bit excited over this. i would appreciate any views you have.
by the way i am getting slightly better at this i think, as up to now all the postings i have made look as if i am posting to myself. funny how little things can make you so nervous.
i just hope i am not barking up the wrong tree with this.