Another newbie I am in France

Hello, I am getting my biopsy results tomorrow. I am in France. But this morning I had a letter in my email intray with an appointment next Tue for a pre op consultation and a visit with the anaesthetist. I rang the hospital and they said that they couldnt tell me anything and that they were having the meeting today discussing my results. So I was quite thrown as I had hoped to be away on a course next week. Lots of phoning around. My brother died of cancer last year and we my sister, mother and I only knew four weeks before he died that he had stage 4 - (we knew he was diabetic and could tell he was ill but put it down to his diabetes). So I feel for my poor mother if I do have breast cancer. I have a relative who has had a double masectomy, she said ā€˜keep controlā€™ ā€˜ask questionsā€™ this is keeping me going although it will be that much harder to ask questions it all being in French. I am joining this forum so I am not alone - as I have separated and have no children. Someone is coming with me to the hospital next week so I am lucky about that.

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I am sending you a hug across the channel. Iā€™m sorry about the diagnosis and your family history. I hope Iā€™m not overstepping by offering my prayers for you and your loved ones.
This is a great place to find support and information. I myself am waiting for the results from a MRI so we know what is happening.
There is a phone number in the site that you could use to contact BC nurses. They are great and can give you information and counselling.
Thereā€™s a topic here named Ask Our Nurses also. This is a quote from a post there:
ā€œIf youā€™d like to discuss things more privately you can email our nurses or phone our free, confidential helpline . The number is 0808 800 6000. (Monday-Friday 9am-4pm, Saturday 9am-1pm). If you call out of these hours, you can leave a message and we will call.ā€

Sending you all my best.

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Hello
Thank you for your message and your prayers. It is quite frustrating, I live 250km from the hospital and my local Doctor has Parkinsons the hospital would not tell me my results this morning, letā€™s hope that the Doctor has received them - I have an appointment with him in an hour and a half. Yesterday not having had any results I got by email a letter saying that I have an appointment next Tue in said hospital to see a pre surgery person and then an anaesthetist. I am just hoping that I am not going to have to wait too long to have the results as I donā€™t want to turn up at the hospital and then be told and not have time to reflect as I am not about to sign a paper of agreement with an anaesthetist without having had time to reflect etc. It is really difficult to get through. The Doctor is 45 min drive away as I moved house last December and have not reregistered there is sometimes a difficulty finding Doctors in the countryside, the good lady Doctor I had went off to work in A & E in a larger hospital. There are difficulties for Doctors in rural areas.

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Oh dear. Yes, frustrating and difficult conditions! You are doing the best and yes, you need to understand whatā€™s happening before committing to anything.

I hope you can transfer to a closer hospital or doctor at least, as soon as possible.

Even though itā€™s difficult, what Iā€™ve read here is that we should ask questions and understand whatā€™s happening, avoid as much as possible getting anxious and seek support. You know you can find people to talk to here and youā€™re doing your part by asking clarification when needed.

A big hug and all the best.

Hello
Thank you this is also what I heard yesterday to ask question: Well I am translating the results; it is DCIS level intermediary there is a lot to read about it here thankfully: I donā€™t want to be pushed into anything; It says that sometimes invasive can be missed: I would like the lymph glands to be tested but I donā€™t see this as likely unless I have a masectomy maybe this will be an option I donā€™t know: I have an appointment in the morning pre op and I see the aneasthetist in the afternoon this does not seem to leave much time to think about what kind of treatment I want to take :
I am not likely to find a nearer hospital and as it is more than 150km away there is difficulty getting help with transport: So I will have to drive it takes 2 1/2 to 3 hrs and so far although someone has come with me they have not driven. I live in the French countryside and it is a big country. The Doctor sent me to this hospital because it is the best in the area for Cancer but it is a long way. Without having tests on the lymph glands I would wonder if I had cancer somewhere else I think ! Not sure what anyone else has found

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Oh wow! Theyā€™ve scheduled the operation without knowing exactly where it is? And they didnā€™t discuss the therapy with you beforehand? Itā€™s quite different from what Iā€™ve had here in England. I guess you can discuss everything before the actual operation, right?

I have an invasive cancervin the lobules, so I had an MRI this past Sunday to see how it had spread. Now I have the appointment with the consultant and the team in 2 weeks.

I really donā€™t know if I can help you much but you are in my prayers and I hope you can get all the answers you need.

A big hug. Take care.

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Hi again
I think they have made an appointment to discuss operations, but I am only guessing then they seem to give just the rest of the morning before having a chat with the anaesthetist I think - before last year I had never had an op, but its a long story but as a result of driving to try to see my brother who was very very ill, I drove with a twisted ankle then had to have an operation. Just to get that off my chest. Anyway you have to meet the anaesthetist and they check you have no allergies etc and talk about the anaesthetic that goes with the op. I donā€™t know if it is general or local. But I think in the morning they have to talk about the stages and I think first there maybe a check, but they put in a marker when I had the biopsy so they know the area where they will operate. But it is quite weird as I have not discussed it with anyone and a pre-op appointment has been made. I donā€™t know if they have in mind an op date or if I can say if I want a mastectomy or part taken away. When I had my ankle op the surgeon said, ā€œsorry it is bad news (looking at the MRI) we need to operateā€, so then I could say at least - yes or no !!!
Have you had the result of the MRI scan ? Do you have to wait two weeks for the MRI result ? When were you diagnosed with the invasive cancer in the lobules ? It seems to have a very good survival rate if you donā€™t mind me saying so. Thanks it is a help that you write I appreciate it.

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Good evening. Itā€™s good to have this conversation, I think, as we might learn together and support each other.

I truly hope you can make all the questions you might have and get satisfactory answers.

I was given the diagnosis the 17th of this month. I had the blood test to check my renal capacity that same day. On Thursday I was called to tell me the MRI was going to take place on Sunday past, the 23rd. Thry told me the results would reach my consultant in 2 weeks but today I received a letter telling me the appointment with the consultant is Monday the 8th.

In one hand Iā€™m happy it has been so quick, on the other I wonder what made it be so quick. I want to call the BC nurses here in this forum and ask some questions, because Iā€™m am overthinker and I know Iā€™ll just live in my head with all kinds of scenarios playing.

Thank you for your patience with me and I hope you have a good night and a great rest of the week.

DCIS is ductal carcinoma in situ this means it has not spread beyond the duct itā€™s in. It isnā€™t technically cancer. It is pre-cancer so it should not have gone into any lymph nodes. Sometimes the advice is to go for mastectomy especially if itā€™s widespread as the thinking is it will spread at some time so get it out now.

I had a mixture of focal DCIS and ductal breast cancer at my first diagnosis in 2003. I had what they called a segmental mastectomy which was the cancer cut out (it was half way up my breast on the armpit side). That left me with a nipple that moved sideways towards my armpit. I also had lymph node sampling. And radiotherapy as if you have lumpectomy or whatever they may call it, you have radiotherapy too to mop up cells. I had to go Monday to Friday to the hospital to have this for 3 weeks. 15 sessions.

When I got breast cancer in the same breast 19 years later, I had a different kind of ductal cancer. As Iā€™d already had radiotherapy and you canā€™t have it twice, this time I had to have a mastectomy. So bye bye breast but hello reconstruction from my tum. I was by this time aged 66 so I might have opted for less surgery but oh no, I was seduced by the idea of a nice flat tum and a nice warm breast but without a nipple as that would go.

Because of previous surgery it still looks a bit misshapen but two years on I do not want the liposuction of fat cells that has been offered by the plastic surgeons. I live quite a long way from the hospital I go to which is Guyā€™s in London, but thereā€™s a train that goes there.

You have the most benign kind of breast cancer at the moment so I think you have time to consider your options. Breast surgery is pretty easy compared with cancers deep inside the body. A breast is on top. In the old days is was mastectomy for everyone and you end up with a flat side, a falsie on that side and a numb area on the flat side as they have to cut a few nerves to take off the breast.

I do not know what I would do now if I got cancer in my right breast. Being 68, nearly 69 now my life expectancy is probably 86 without cancer, and unknown as I now have breast cancer and some of the treatments make you more likely to get other diseases e.g. heart disease which are already more likely to kill me than breast cancer is.,

So such is life, you have cancer you die, whether or not you survive cancer. If that makes sense. The likelihood of death is 100% with or without breast cancer.

Itā€™s being so cheerful keeps me going. NB Living a long way from a hospital isnā€™t that bad for me as a lot of the consultations are done over the phone but I do live in a place where they communicate in English, or a version of it. I donā€™t understand a lot of what they say without looking it up on the internet or reading leaflets from Breast Cancer Care. These are available on line or can be sent out.

All the best from someone who passed o level french I think but never quite got the hang of speaking it

Seagulls

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Hi
Thank you that is really helpful and I am glad that you are cheerful. I do find it surprising that with JUST this, ie not really cancer, pre cancer and only one tiny cell of it quite possibly a mastectomy is something I am going to think about and no second opinion bu that must be what thousands of other women have done without my realising until now. I did hear a talk a few years ago from a Doctor who is a nuisance to other Doctors in that he is controversial and I wish I can find his name again as he implied that women are not well respected always by the medical profession. Now I donā€™t want to appear ungrateful or not cooperative but I would like to find what he said !

I heard some awful stories of women in the 1960s and 1970s in England who were told they had to sign a form to say they agreed to a mastectomy before they were anaesthetised and the biopsy was done while they were asleep and they then woke up with only one breast.

In the 1970ā€™s my friend refused to sign and they kept her in hospital for a week before they realised she couldnā€™t be bullied into it.

That meant she had no investigations at all. Sheā€™s now in her 80s with rheumatoid arthritis but both her breasts intact. Do not go through with any surgery unless you know what the alternatives might be.

I definitely did not want to lose my breast and I had breast cancer plus focal DCIS which means the cancer was surrounded with pre cancerous cells.

Incidentally I was told it was benign to start with and waited from June until November to have my lump removed. As I have been alive for about 24 years since then I know this did not have any impact on my life.

Breast cancer is a very very variable condition. You need to know the grade, the size and the chemistry / DNA and whether it is hormone oestrogen positive or negative. And whether there are any lymph nodes with cancer in them.

I got cancer back but it is a different grade, size and type and I was 19 years older. So donā€™t panic! As I am now 68 going on 69 and a lot fitter than I was.

Good luck my friend

Seagulls

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Hello
Thank you
good luck with your current treatment
You say that I need to know the grade
Well I think DCIS is graded low intermediate high and mine is intermediate with necrosis.
Then you say size chemistry/DNA ? What would this be ? I mean is that about if I have it in my family?
Then hormone oestrogen positive negative, do you know how I find this out ?
I am assuming it is not in the lymph nodes as they say it is in situ, ie contained in the cell. Fingers crossed. Thank you

By chemistry I mean there are different kinds of breast cancer and the most difficult to treat are the triple negative kinds that do not grow in the presence of the hormones oestrogen and progesterone and/or are HER negative which means they canā€™t be treated with herceptin.

Most tumours affecting older women are oestrogen positive which means they grow bigger in response to oestrogen in the body. Thatā€™s why women with this type of breast cancer are recommended to take tamoxifen if premenopausal or Letrozole or another aromatase inhibitor which lowers oestrogen levels in the fat of post menopausal women.

women with oestrogen positive cancers are recommended to take these drugs daily for five to ten years. Unfortunately they do have side effects such as raising cholesterol and blood pressure for some women.

As these two side effects increase the risk of heart disease and this kills more women than breast cancer, one might feel itā€™s not going to help overall health even if you escape breast cancer.

I do not know how many women with dcis go on to get invasive cancer as the trend seems to be towards mastectomy as the surgeons and oncologists assume it will eventually become cancer. If you are young when diagnosed you might be cautious and want to lower risk fair enough.

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Hello again
Thank you I am now going to try to translate this information into french so that I can ask on Tuesday. I have managed to contact an old friend in France who is British but works as a nurse in the French system so she is going to check my questions in French which I am really grateful for. Best of luck to you, how are you doing ? Do you have breast cancer for the second time did you say?

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yes i was diagnosed with it aged 48 after finding a lump when I was 47 but i had tsts at four different hospitals before I got my cancer diagnosis number one. it was grade 1, small tumour, no lymph node involvement. i ahd two ops one to remove the benign lump, hen another because there was cancer on the margins. both ops were painful. I also had a wound infection which was treated with iv antibiotics that didnā€™t work. All this happened at Christmas 2003. My cancer was very rare it was called glycogen rich clear cell carcinoma. i only came across one other person with it in 6 years.

The kind I found in 2022 was bog standard ductal oestrogen positive ā€œNOSā€ which stamds for ā€œno special typeā€. This time it was 2.6cm or maybe a bit smaller, with a lymph node next to it whixh looked like another tumour as it was full of breast cancer and had gone hard. They recerred to this in my pathology report as a ā€œmetastaticā€ intramammary node. i a, unusual in having lymph nodes in my breast although I did have some in my armpit which were taken out in 2003 so i donā€™t have any now in that area. they confirmed this through some nuclear scan that Guyā€™s have. i had to lie under a machine that took an hour to take a lot of scans. i fell asleep as i found it rather soothing and for once the technicians were nice. i bought my own gown with me as i was fed hp with the hospital ones that do u0 at the back and expose hour bare bum to the world

seagulls

@Seagulls thank you for sharing your experience and knowledge. Iā€™m sure this helped a lot, it has been of enormous help for me to have an idea as what to ask the consultant. I know what type of BC I have but still donā€™t know where it is or if thereā€™s more than what theyā€™ve found so far so I havenā€™t started any treatment yet.

I hope both you and @cmiers14 are doing ok and you both are in my thoughts and prayers.

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I have to have a small op in France, where I am living at present - and then they will analyse this. Then if all clear I will decide about radiotherapy or not. I am tired, people have been cheering me up but I need space to take in all that has happened. The op is in two weeks and I need a few days for this to sink in especially as I am on a course all of next week

Best of luck with your op and whst will come later. Itā€™s a good thing that you have people that support you but I understand the need for space to take it all in. I hope you get that space and time as you will be busy next week. Sending you a big hug.

Hi I am on the course now - two days in - its an effort now to keep 9n track. I wanted to have space and now Im just fed up ! The french is too hard to follow and I thought I had a place to stay in France for any post op.follow up treatment and now thats fallen through. I can stay where I am but its a bit basic and the elderly lady next door leans on me quite a bit. But I guess Ive got to just be grateful. I had been hoping to find some work but I cant apply for jobs now. At least I can do crafts to keep busy. Has anyone had radiotherapy ? Whats the treatment like ? Can it damage your lungs? Im just a bit worried. Carol

I have had radiotherapy on left breast where heart could be in the way. In my case my heart was small and they said it wouldnā€™t be in the way. I took their word for it!

Radiotherapy is recommended if you have lumpectomy which I had on first diagnosis. I did get bad burns after my allotted 15 sessions by that cleared up fairly soon after they finished. I had Monday to Friday for three weeks so weekends off.

I think thatā€™s cos radiotherapists like to work Monday to Friday but they said it was for my benefit! I didnā€™t enjoy lying under a large machine for ten mins a day it however it took as it whizzed and moved but they played music some of which annoyed me. Particularly something by Dusty Springfield who died of breast cancer. She was singing with the Pet Shop Boys though. Not alone. Good luck.

Seagulls

Seagulls