Calling all triple negative breast cancer patients in the UK
Comments
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Mary - my thoughts and prays are with you. No time is a good time to be diagnosed with cancer, but somehow being diagnosed so young and during a pregnancy just isn't right! No wonder you are scared - I sure would be - hopefully the baby will not be too small. Are you able to get help from family and friends?
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Hello Marymargaret,
Thank you for your post. I was sorry to read that you have been diagnosed with breast cancer with triple negative receptors and I can understand how upset you are. A diagnosis of cancer always sends us into shock and we always fear the worst. You need to give yourself plenty of time for the diagnosis to sink in and then prepare yourself for treatment. Do not read all the doom and gloom on the internet about breast cancer with triple negative receptors. Take one treatment at a time and focus on that. Chemotherapy is the most challenging because it goes on for six months and there can be side effects that make life a bit difficult, but it can be done and like the rest of us you can do it.
Do not worry about having a big tumour. Just hold on to the fact that the chemotherapy treatment will deal with this and that it is very effective in treating breast cancer with triple negative receptors. I also had a large tumour, 7+ cms and am still around nearly nine years since diagnosis.
Do you know if you have any nodes affected with cancer? Have you had a sentinel node biopsy? What kind of breast cancer do you have? I often notice that women on the thread say they have triple negative breast cancer, but that is the receptor status, not the kind of cancer. Do you have invasive ductal carcinoma (IDC) the most common kind, or do you have something else?
Sending you fond thoughts.
Sylvia xxxx0 -
Hello Marymargaret again,
I hope all goes well with the delivery of your baby on May 28th and you can rest assured that we shall all be thinking of you on that day and wishing you well. We did have another woman on the thread, Mumtobe, who gave birth to healthy baby Emma in between her breast cancer treatment. She got through it all and the last time we heard from her she was living a healthy normal life.
We shall all be thinking of you on June 6th when you begin your chemo and sending best wishes.
It would be helpful if you could let us know what chemo drugs you are having and the combination. It would be useful if you could put all this information beneath your posts, in your profile, so that it is there for us to consult when helping you.
I was wondering where exactly you are and your age.
Have you had a pre-chemo appointment where you are given information and have you had any pre-chemo scans? Like you, because I had a large tumour, I had my six months chemo before I had a mastectomy and removal of seven nodes of which only one, the sentinel node, was positive. The chemo did shrink the tumour and this makes surgery easier.
After diagnosis I had a CAT scan and a bone nuclide scan to see whether the cancer had spread. Fortunately for me it had not.
Did you discover the lump yourself?
All this may sound like a lot of questions but it is useful in order to help you.
For the moment concentrate on having your baby and then on just the first chemo session.
Wishing you all the very best.
Sylvia xxxx
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Hello Norma,
Thank you for your post.
It is true that nine years ago when I was diagnosed, the term triple negative breast cancer was in the dark ages in the UK. I was simply told that I was oestrogen negative and progesterone negative and that tamoxifen was of no use to me and that the prognosis was therefore not good. I actually did not take much notice of this as like many women I thought it was probably a death sentence anyway.
Later I was told that I was HER2 negative and that this was a good thing because to be positive meant a very aggressive cancer.
I was in an emotional mess when I was diagnosed but this did not last long and I just got on with the treatment as there was no other choice. I remember after the chemo and the mastectomy I had an appointment with both the oncologist and the breast cancer consultant surgeon and they had beaming faces as they told me there was no visible evidence of cancer and that they were so pleased with everything. I then went on to have radiotherapy with boosters for three weeks.
I have learned to live one day at a time and just tell myself that I have got this far and that I do everything I can to stay healthy. When I was diagnosed I was not really aware of forums for support, but I did have Hospiscare nurses who visited regularly. I read books to inform myself rather than the internet.
I hope you have had a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
It was nice to hear from you and I was glad to know that you are making the most of the visit from your sister form England.
I do hope all will go well with your daughter Kerry. This must be an anxious time for her.
You are right about making the best of every day. None of knows when our number may be up, and that is true whether we have had cancer or not. I really have to live the simple, minimalist life. There is no other way for me. I see too many people who are slaves to their possessions and live complicated lives . That is not for me.
Please let us know all about Ageing with Confidence. It sounds most interesting.I do hope you will have a good holiday in Turkey.
Take care. Fond thoughts,
Sylvia xxx
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Hello everyone,
Just popping in to say that I hope you all had a good weekend.
I have had some stressful days with my younger brother here, who is not at all well. I took him to A&E and we had to wait for four hours to get to see a doctor, we were there from 7 pm to midnight! The place was packed and not enough staff. I have also experienced going through the 111 to try to get a home visit from a doctor. It is unbelievably bureaucratic. I finally had to take a urine sample to the out of hours doctor at the Exmouth hospital and am now about to try to get a blood test done for my brother at our normal surgery. It has not been a good experience.
I hope to hear from some of you during the week.
Best wishes.
Sylvia
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Hello Sylvia
I am so sorry to hear about your brother - what a worry and stressful situation for you. I do hope he gets better soon. Waiting so long in A&E is appalling - it puts tremendous strain on people who are already feeling unwell. Not a very happy Bank Holiday for you I'm afraid. We had blanket rain all day yesterday, all our best laid plans went Kapput. My son had invited us for a BBQ in his lovely garden, however this had to be changed - and the Guildford County Show was under water. So many people had worked so hard for what ended up as a literal wash out.
Have been spending most of the weekend completing comments for my Mother's continuing care forms. She is so needy, totally dependant 24/7 for everything, cannot even make herself a cup of tea and is paying nearly a £1000 a week for carers in her home. I help where I can too. I do hope she is awarded this payment as she fits the criteria. As you have discovered though in A&E the NHS is struggling so no doubt they will find something to preclude Mum from help towards her care.
I do hope all goes well with your brother, Love Norma x
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Sylvia - what a horrible situation in which to find yourself at the hospital! Your brother is very fortunate to have you to help him out in this way. I hope that things get figured out and that he gets the help he needs. You certainly don' t need this stress in your life. Thinking of you. Let us know how things are?
Normandee - it is rather unfortunate that medical systems cannot give better care to our seniors. This is a time in people's lives when they need all the help they can get, and yet it doesn't seem to be there for them or their families. It is quite distressing and discouraging! Hope things work out for your Mom!
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Hi Sylvia
I hope your brothers health is improving.
I have spent the past week struggling to get Windows working correctly on a new tablet computer. Did you have any luck with the problem with Word?
Anyway I am resuming my news links.
Michael
http://medicalxpress.com/news/2014-05-response-che...
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Hello Norma,
Thank you for your post and for your kind words. The doctors are still trying to ascertain what is wrong with my brother. He has to have another blood test tomorrow, but the doctor has said there are things wrong with the blood in the first test and that he will discuss it all tomorrow.
I rally think the NHS is suffering from under-funding and under-staffing. A lot of it has already been privatised. I have just been talking to a cousin who lives in London and he told me that there is now a five week wait to see your GP. Here in Exmouth it is three weeks.
I am sorry your mother is having such a hard time and an expensive time to get care. I think it is appalling that in this rich country, the politicians waste so much money but not on care of the elderly and needy. I believe that a country that does not take care of its elderly people should hang its head in shame. I also think it is shameful to see in a newspaper that 5 million children face a life of poverty in this country. Our politicians have no common sense.
I have seen some of the care that goes on and it is not good. Again, there is too much bureaucracy and too much form filling. it is unbelievable the process that you go through when you phone 111. I can understand why people are phoning 999 instead and getting an ambulance. I got fed up with the 111 bureaucrat at the end of the line and told her that I did not think the system was acting in the interest of the patient.
I was sorry to learn that your weekend was spoilt by the weather. Everyone seems to be getting on planes to sunny climes to escape this country. It is dull and rainy here today and we have had to wear our winter coats.
Keep well.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
It was nice to here from you.
My brother seems to be up and down but I hope we shall know more tomorrow.
Raymond has had no luck with the Word problem. He even tried using Notepad to compose and save before posting on the thread, but the problem is still the same. We do not know much about Windows 8. We have 7 and Raymond does not want to touch 8. He has heard nothing but bad about it. Let us know if you succeed.
Thank you for the links which I shall have a look at the weekend when I hope to have more time to myself.
Take care.
Best wishes.
Sylvia
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Hello adagio,
It was nice to hear from you and thank you for your words of support. I shall let you know what happens.
It is one of those days when you long for some sunshine, but all you get is rain. It is sad for the children here as they are on half term holiday this week.
What is going on in Canada?
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia!
I have been reading the posts and am so sorry you are having the difficulties with your brother. I do hope you can find some things out today and he can be on the road to recovery. Bureaucracy is the enemy of efficiency, in the medical world for sure. I also feel the same as you and Norma about caring for the elderly, it seems awful to me to waste government money on people who could work but choose not to, and on all the other misguided uses they find for our money. Instead we should be caring for the elderly and ill who cannot do so themselves.
Today is Day 9 since my last chemo, I feel allright but tire easily. I am saving my strength this morning so I can take my husband to a doctor appt. today and stop at the grocery store on the way home. This was my last treatment of the Cytoxan/Adriamycin, my next treatment on June 11th will be the first of 3 Taxotere infusions. I have come to know what to expect with this current combination, I will have to learn a new drug. Although I did have it my first treatment, in combo with the other two. They are not going to draw blood for the NADIR test today, they said they know my counts will be low but they are confident that the Neulasta will bring them back up. It did work that way before.
I asked my oncologist about radiation during my visit last week; he said in his opinion I don't need it. I was quite surprised since about everyone I know has had it. It seems that 99% of the women on this website have had radiation, I will definitely have to hear more about this. He said he was going to consult with the Radiation Oncologist about my case and see what he thinks. I still have a ways to go before I would be ready for it, but I was wondering what you think, and others here who have gone through the process.? It would be lovely to be done with everything after chemo but on the other hand I don't want to cheat myself out of something that may be beneficial in the long run.
I ordered "B is for Breast Cancer" today, I also ordered "Anti-Cancer, A New Way of Life." And just to shake things up I ordered a DVD called "Fall of Eagles". About the fall of the houses of Hapsburg, Hohenzollerns, and Romanovs. It is a long series, I thought it would be good if I have days with the next drug as I did with this last combo. Last weekend, which was our Memorial Day weekend, I spent on the couch for the most part, very fatigued. The TV was showing lots of war history shows, and that is what we watched for days. Mostly WWII. I learned a lot, whether I retain it is another question! We are somewhat history buffs, so I might hang on to some of it. The sacrifices made by the fighting men and their families, the tactical moves by the war leaders is engrossing. The great loss of life is staggering. America lost almost 500,000 in the War as did the UK, and that pales beside Russia and Germany who lost many millions. I was surprised to see the RAF/Allied numbers; being a fighter pilot was almost an automatic death sentence.
To get back on subject, I hope to get some info from the books I ordered for my during and after-chemo life. I will sure be glad to build some strength back, I feel so thin and weak.
I hope your weather improves, it is almost June; still time for some warmth to come your way. We have become hot and steamy, we have been getting a lot of rain.
I will talk to you all again soon; Norma, I wish you the best with your mother's situation. And Sylvia, with your brother.
Hope everyone is feeling well, Mary
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Sorry I've been quiet here lately - no excuses. I had a femoral hernia repaired 2 weeks ago and that is now looking good and I've been given the all clear to drive again!!
Sylvia, I do hope they can find out what is wrong with your brother and it will be something very treatable! Have read through the last 3 pages on the thread with interest - I'm doing ok, thank you - because of the surgery I had an extra week off chemo, which was a real bonus, gave me time to heal and feel pretty good again. I did rest a lot, which was good.
You talked about whether cancer is curable or not, it's a hard one, don't know that there are any clear cut answers, not with this disease! I do know that when I was told I was stage iv, my onc did say that once the cancer has spread to another organ or organs, the lungs in my case, it is not curable, we look for quality of life, not quantity etc etc. Well I did take it as a death sentence and went to a very dark place for a bit. But that was 15 months ago and I'm still going strong! I think there is the concept of stage iv being terminal, and sometimes it is, I've seen women survive only a short time, but there are women who live with stage iv breast cancer for many years. I would like to bust the myth that stage iv is the end, it's not a great prognosis, especially for us triple negs, but we can still live pretty good lives, be it one year or 5. I'm just gone 2 years since my initial diagnosis. I know I'll never have chemo as rough as the AC again, they don't want to kill me with chemo. At the moment I'm stable on Xeloda, am thinking of a part time job now, after not working for a year. I have my days when I'm not so bright, chemo does take a toll, even though this is a very do-able chemo. But I'm learning (very slowly) that the big challenge is to live a life, despite being stage iv. It is a bit tedious at times, and I get sick and tired of the whole story, but it is what it is, and I guess in a way I'm making peace at being dealt this hand.
Hey Mary, oh my gosh, you sound like you've had a tough time! I got neutropenia on the AC and was hospitalised in a separate ward and had 2 shots of neupogen and my blood counts shot up within a day. I did 6 months of Taxol, once every week for 3 weeks, then a week off, and found it very much easier than the AC. I found I had a lot of fatigue, but not much nausea. I also live quite far from my oncology unit - it's an hour and a half drive each way, but I think spreading the dose out over 3 weeks, instead of having one big dose, makes it much easier. It was accumulative for me, and at the end of 6 months I was happy to be done with it. As far as I've heard, the Taxol is a bit easier than Taxotere, but nothing can be as bad as the AC!! Sylvia is right about lots of water, I got mouth sores and ate a lot of soup and soft foods - ice cream or frozen yoghurt is brilliant for that, plain yoghurt also. I eat full fat everything now, just to get more calories in. You also spoke of rads, whether they will suggest you have it or not. They also said to me that I wouldn't need rads, but at the end of chemo they decided to do 25 rads just 'to make sure'. I did find that radiation after hard chemo was exhausting, plus travelling back and forth every day. Seems to me that I just travelled, got rads, got home and sat in my chair or slept till the next day. I don't remember doing anything else, except at the weekends, when I would maybe manage a short walk. And that was fine, I got through it. And after all of that 'just to make sure' stuff, they found mets in my lungs 3 months later. So go figure... Maybe they were there all along, how they survived all the chemo I don't know. Anyway, that's my story, and I'm sure you will get through it all, and be clear and no evidence of disease! I got neuropathy in my feet and hands, my toes are still pretty numb, the last 3 toes of each foot in particular. But as with Sylvia, it doesn't bother me walking or doing anything. It does feel like a bunch of bananas are on the end of my feet when I swim! My hands did get much better. I have some hand foot syndrome from the chemo I'm on which makes the skin on my fingers peel, so it's hard to know if it's that or neuropathy, but I think it's mainly the HFS. I believe that the icing is very effective; I didn't do it cos it was mid winter and I'm a total nut about being cold. I also heard that vitamin B6 is also helpful. Hang in there, girl, you can do this! I was happy to read that hubby had some improvement in his health, that must be a big worry for you too. If you are feeling too bad, would it be possible for someone to come in and help with some stuff? I have come to understand that I'm not superwoman after all! I'm learning to ask for help, I had a girlfriend come and stay with me for the last AC, and that was a huge help, cos I live alone. People came in and brought me meals, and do so now still! I've learned too, that I need to be specific about my needs - ask people to do specific things to help. Many people want to help, but don't know what to do. I do hope you'll find the Taxotere much easier than the AC!
Susan, you are off on holiday again, hope you have a great time - celebrate each day, as I'm sure you do! Am so happy your mammo was clear - big yay!!
Adagio I'm so sorry about your sister, that must be a really tough one, you have my sympathies.
Marymargaret, I hope your birth went well - I'm sorry you have to deal with bc at this time, it's just not right! But you will find so much information, caring, identification & help here.
The book B is for breast cancer sounds very interesting, will look for it on the web.
Thank you all for this thread, there is always so much interesting interaction and information here, and also, I find, a lot of hope, I'm very grateful for this.
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Just a quickie,
Sylvia how is your brother?
Carolben so nice to know all is well with you ,
Marymargaret I did not need radiotherapy either - thought you might like to know that.
It's 7.30 in the morning just off for a walk with the dogs as have a full on day with mum today.
Love Norma x
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Hello Mary,
Thank you for your post. I got the definite diagnosis for my brother today and it was that he has a bad unidentified virus infection. His first blood test showed a C-reactive protein score of 230, when the normal should be 10. This test is one that looks for inflammation and infection in the body, but is a non-specific test that does not show where the infection and inflammation is and can also indicate a whole range of diseases. The doctor was thinking perhaps was myeloma but the second blood test has shown the CRP has gone down to 110 and that rules out myeloma. The doctor has said the viral infection will work its way out and that my brother is on the way to recovery. He will have another blood test next week, by which the CRP should be back to normal. Whatever it was, very much affected his short term memory and the doctor has said it is not an indication of dementia.
I do hope all will go well on June 11th when you begin the Taxotere. Go to this chemo with confidence and with a clear mind that you are going to cope. As always, drink plenty of water, get plenty of rest and keep looking forward both during treatment and waiting for treatment. I know it is difficult for you because you have a husband who is not well. If you can get help to get you through the day, do not hesitate to do this and keep your head clear of any preconceived ideas about the side effects of the chemo. What affected others will not necessarily affect you.
As for radiotherapy, do not think about it for the moment. When going through breast cancer treatment you must deal with one thing at a time, otherwise your mind will be in turmoil. When you have finished chemo have a good chat with your oncologist about it. I was told that radiotherapy was given to mop up any stray cells. I found it very easy and the main problem was having to go to the hospital five days a week for three weeks. The treatment is very quickly over as far as being on the radiotherapy bed. I just used to close my eyes and count the seconds. I had no skin problems. I just continued drinking water, getting a lot of rest, telling myself it would soon all be over and of course I kept up my routine of eating healthily and eating simple food. You can do this.
I hope you get to read B is for Breast Cancer. It was written by a patient as she went through treatment and there is a lot of truth and humour in it all.
We are all thinking of you, Mary, and wishing you all the best. We now have two patients called Mary going through treatment so we have to make sure we do not mix the two of you up. We have to remember you are Maryna8 and the other one is marymargarethope. We do not have many details about her, so do not know whether is based in the US, the UK or elsewhere.
Fond thoughts.
Sylvia xxxx
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Hello Carolben,
I was glad to hear from you and that you have recovered from your hernia repair.
As you can see from my post to Maryna8, my brother is on the road to recovery. It has been a long stressful two weeks and I am glad it is at an end. My brother is a very difficult patient.As for the word curable with cancer, it is not a word I would ever use, because it can always come back. I do feel strongly that the medical profession should stop using the word terminal for stage IV cancer. I think they should just call it stage IV cancer and leave it at that. Some people do not survive for that long, and others live for many years and some have instantaneous recovery. The word terminal is too discouraging. A good friend of mine in Canada was told to prepare for her husband's funeral and yet he made a complete recovery from non-Hodgkin's lymphoma and died quite a few years later from a heart attack and there was no trace of cancer in his body.
I was so glad to know that you are going to get a part-time job. I think it will be very good for you and take your mind off breast cancer. Just make sure you do not overdo it. I think you are right to live as normally as possible and put the words Stage IV to the back of your mind.
I read an article this past week in two different newspapers about how keeping to a low calorie diet was helpful in preventing metastatic breast cancer, especially for TNBC patients. I think we all know that being overweight is not good for overall health, so I can understand why they would be stating this. Of course, some patients do put on a lot of weight during treatment because of the steroids. I have sometimes found this difficult to comprehend because you do not have that many steroids. However, for those with hormonal cancer and on long term use of weight causing drugs such as tamoxifen, this is a problem. The people that i know here were, like me, very slim when they were diagnosed with cancer any way and one has put on weight because of tamoxifen.
I shall write more tomorrow as I am very tired now.
Fond thoughts.
Sylvia xxxx
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Hello Carolben again,
I agree with all the good advice that you gave to Maryna8.
I agree that we can live with the side effects of this treatment and they are a small price to pay for being alive. The only long lasting effect that I have is neuropathy in my feet. It is a strange feeling of numbness but most of the time I can deal wit it. Sometimes the palm of my hands go red but there is no numbness.
I am writing this on Sunday and I have been catching up on the work that I do in my apartment complex as part of my duties as a volunteer director.
That is about all for now. Please keep in touch.
Best wishes.
Sylvia xxxx
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Hello Norma,
Thank you for asking about my brother. You will see what has been happening from my other posts. He is on the mend now. He had a nasty unidentified virus.
I am trying to recover from the hectic two weeks of dealing with various hospitals and doctors.
I hope you are having a good weekend. The weather here is quite dull and not that warm.
Wishing you all the best.
Sylvia xxxx
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Hello marymargarethope,
I am just popping in to say that I hope all went well with the birth of your baby on May 28th.
I hope all goes well when you start chemo on June 6th.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was just popping in to say thank you to those of you who have contributed to the thread this past week. We have a strong thread going here and a group of thinking and kind women.
I was wondering what has happened to Jackpot (Gill) as we have not heard from you since you went on holiday to Turkey. I hope all is well.
The same goes for Susaninicking. Are you enjoying the good life in France?
Where are you InspiredbyDolce? I have not seen you on the threads in a while.
I hope all is right with peterandliz and sam52. Have you decided to move on?
Wishing everybody a pleasant Sunday and a good week. Let us know if you are going off on holiday.
Thinking of you all and remember, enjoy every minute of the day.
Sylvia
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Hi, Carolben
It's good to hear from you, didn't know you were having hernia problems. I'm glad it is taken care of and you can get on with other things. These bodies of ours are fragile vessels at times, and then again so strong and resilient.
So you were in the hospital with the neutropenia too, it's an unpleasant experience but I'm glad they have the bone-marrow drugs to fix it. I did TAC for my first dose and that's what landed me there. Then I went on AC and I found the worst side effect for me was/is the fatigue, sometimes extreme fatigue. And my legs feel so weak at times. I have always been a walker and very active, but sometimes nothing will do but lying down for a few hours. I am going to try doing the Taxotere at 3 week intervals, if I can't do it that way then I will do them weekly. I have 4 treatments down, 3 to go, looking at the downhill side. Yay! I have a 45-minute drive each way, not as far as you but far enough when you are tired. I have people who will drive me, but sometimes I don't even want to ride that far!
Sylvia and you have given me insight on the radiation. No need to worry about it yet, and if I need it it's just another thing to get through with not so many side effects. I'm just not sure what they would radiate, I guess the lymph node area? Anyway, time to think about it later. And I did check out the icing for the Taxotere. But since I have the Raynauds Syndrome or something like it in my hands, it is not recommended. I can't even have my hands in my freezer for any time at all.
Thanks for asking about my husband. He has been pretty stable over this last month, which is awesome. I do have a nurse-friend who will come over when I ask her, and our family doctor's office is just a couple of miles away. You are so right about telling people specific things to do, I have a long list of names of people who are available to help. That is comforting to know they are are there if needed. Lately he has been going into his office for a few hours a day, which he loves, so that's a good thing. Our biggest challenge besides for health emergencies has been cooking and eating on the days when I am feeling very low. He is on special diet so it is very hard for other people to cook for him. I have found the best method is to cook ahead and have lots of stuff in the freezer that I can pull out and heat up. So several days from now I will start cooking some stuff and packing away before my next chemo. Another difficulty is the difference between his dietary needs and mine. I need lots of protein, he is only supposed to have 5 ounces a day, for an example. But we are managing so far. I have fantasies about being able to call out for delivery, but it's just a fantasy. We are very rural and he wouldn't be able to eat the stuff they would bring anyway!
It sounds like you are doing very well with the Xeloda, that is wonderful. I think I told you before, I have a friend here who has the same diagnosis as you and she is taking the Xeloda and doing very well with it. She is in her early 70's and playing golf and living her life. It must have been hard to hear that diagnosis at first but you certainly have a wonderful outlook now.
Sylvia recommended "B is for Breast Cancer", I am waiting for it now. Also "Anti-Cancer", that sounded like a lot of good info for life after chemo. I'll let you know how it is.
Hope you are having some good times now that you are recovering from your surgery!
I will talk to you soon,
Best of everything to you, Mary
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Sylvia,
I am so glad to hear the news about your brother. Thank goodness it is something that will be resolved. It's just amazing all the things that are out there that can affect us; he must have a strong immune system to be able to throw it off. Now you are having a well-deserved rest, I see; it is exhausting to run from doctor to hospital and back again. Not to mention the worrying and stress.
Thanks to you and Carolben and Norma et al for all advice. I will bide my time on the radiation and see what they come up with when the time comes for it. In the meantime I will try to get as strong as possible to get through the rest of my chemo.
I am waiting with anticipation for my books to arrive, whenever I order something I start looking for it the next day. I know that's silly, but I haven't been able to do much shopping so ordering gives me that anticipatory pleasure. When I ordered "B is for breast Cancer" from Amazon, they said it was the last copy. Just in time for me!
Well, hope the weather is nice for you, and I will talk to you soon.
Best to you! Mary (maryna8)
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Hello everyone, baby Evie was born wed 28 and weighed 4lb 6 oz but she is doing brilliantly. I was discharged on fri and hubby and I have been up and down to see her in the neo natal care, the staff are just marvellous.
Now that baby is out I am having an MRI on Monday and Tuesday is the bone scan. This is where I really pray that it hasn't gone anywhere else. I can't believe how quickly the lump (we call it Larry) grew and in such a short space of time, and just how big it is.I only noticed it before Easter really and thought it was just pregnancy boob. My doc referred me and of course we found it wasn't.
So at the moment I only know that it is TN stage 3, bi lateral lobular cancer. They have done a biopsy on one axillary node and I will get results for that on Thursday and hopefully the results for the scans too which can stage my 'Larry' more accurately.
I have an appt with the Larry nurse on thurs and if all is ok I want to get that needle in my arm on got to start melting it away. I did wonder why surgery wasn't first and now I understand it's to make surgery easier. Although it's only on one breast, I want the other one off too!
I am in very dark places at the moment and just keep thinking that my four children are going to be left without a mother and that breaks my heart.
I have an amazing husband and friends and family so no worries there, also a great faith so we all pray a lot!
I am getting to know you all and your lives. Thank you so much.
I will update my diagnosis history as soon as I know more.
Marymargaret
Age 39, I live in Birmingham UK
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Marymargaret,
Wow, you are just in a whirlwind! Congratulations on your beautiful baby, sounds like she will be just fine. Sorry about the diagnosis, but it sounds like you are as on top of it as you can be and the chemo will shrink 'ole "Larry"! There are some other women on here that had large lumps and they are doing okay now, so don't get discouraged. It is a lot to deal with but it is a blessing that you have strong family support, that must be such a comfort.
There is a lot of moral support here for you, and a lot of practical advice too. I am going through chemo myself but there are a lot of more experienced people here. I have found a lot of support here, and the voices of experience.
I wish you and your family the very best, and hope all goes well next week and you get on the road to recovery.
Talk to you soon, Mary
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Hello Marymargarethope,
Congratulations on the birth of your baby Evie and I am so glad to know that she is doing well.
I do hope that all has gone well with your MRI scan and your bone nucleide scan. Let us know your results.
I have read a lot on these threads from women diagnosed with breast cancer with triple negative receptors that their tumour grew very quickly. It was certainly the case for me and my large tumour seemed to appear from nowhere and was suddenly large and easy to feel at the bottom of my breast. It also appeared after I had strained my right arm doing some gardening with secateurs that were not working properly. My right arm felt strained but there was no pain in the breast.
I noticed that you said you had invasive lobular breast cancer. The most common type of breast cancer is invasive ductal carcinoma (IDC), which is a term used for cancers that are of no special type. Most cancers, about 85%, are classified as invasive cancers of no special type. It was thought that the IDC cancers arose in the ducts and ILC were thought to arise in the lobule. It is now thought that these terms are not an accurate reflection of the origin of the different types of cancers.
Apparently, there are many cancers of no special type and they can be split into groups based on their grade and whether they have receptors positive for hormones and certain growth factors on their surface.
The grade of a cancer is based on how abnormal the cells look under the microscope. Most breast cancers with triple negative receptors are grade 3, which means the cells are far removed from the original cells. Grade 1 is low grade and usually applies to small tumours and grade 3 are high grade and the cells look very different from normal cells. Do not worry about this as they can all be treated.
The invasive lobular cancer with which you have been diagnosed represents 5 - 10% of all breast cancers, so you are in a minority for the type of breast cancer and in a minority of about 15 - 20% with your triple negative receptors. Apparently invasive lobular cancers behave differently to cancers of no special type, IDC.
Invasive lobular carcinoma is often difficult to diagnose because it does not always form a lump and so they are often diagnosed when large.
I was wondering what is meant by bi lateral lobular cancer. I know that a bi lateral mastectomy means a mastectomy on both breasts.
I do hope that the MRI scan and the bone nucleide scan will give you some peace of mind.
I am sure you will feel much better on June 6th when you start your chemo. I found that I went through all different states of mind on diagnosis and I delayed the treatment for too long and I would not advise this to anyone. You will settle down to your routine of chemo. It is the longest treatment. Mine lasted for six months, but you can get through it and we shall help you all we can.
Do not think of anything else while you go through treatment. Find out your stage, you already know your grade, and find out whether any nodes are affected. As for the chemo, let us know what drugs you will be having. The most common are epirubicin and cyclophosphamide combined and then a taxane drug, commonly docetaxel (Taxotere). I had three months of the first two and then three months of the other one.
Take care and remember you are not alone.
Jackpot (Gill) from Liverpool UK, aged 45, has recently finished treatment and I hope she might pop in to reassure you.
Fond thoughts.
Sylvia xxxx
I have also heard of women developing breast cancer during pregnancy.
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Hello maryna8 (Mary)
I am just pooping in to say that I hope all goes well on June 11th when you start your second bout of chemo with docetaxel (Taxotere). I do hope all will go well. We are here for you and I do hope the lovely group of women (not forgetting Michael) on this thread will pop in to support you and cheer you on.
Make sure you get as much rest in the days leading up to the 11th as you possibly can.
Best wishes to your husband.
Fond thoughts.
Sylvia xxxx
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Thanks for your messages guys!
The results for the bone scan was clear, I really thought it had invaded my chest wall because it is so big. The MRI was showing clear for the left breast and didn't show any large masses in the nodes on the right. There is a trace of Larry in the node that had the biopsy. Doc said he didn't think it had gone into many and if it had it would be trace.
My next scan is the CT and thorax on tues but oncologist assures me that would be clear! So very relieved, I just kept hearing the word terminal, I have never been so scared.
My treatment now starts 13 June as they want to give my c section time to heal. I having FEC, I did write the names down but can't spell them! Has anyone else had this combo?
My little tiny girl is doing well and hopefully she will be home within 4 weeks.
Its raining here in Birmingham and all my friends are doing race for life!!
I am being positive now I have had the news it isn't anywhere else, had some very dark days this week.
Have a good weekend,
Marymargaret
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Also...... I have a lot to owe my little girl, although we know this Larry is not hormone induced, Doc said the pregnancy did make it grow quicker and brought it to light. I may never have found it until too late if i hadn't had my little accident ....
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Hello Marymargarethope
I was so glad to read that the two scans were clear. I can understand how relieved you must be. It is full steam ahead now with the chemotherapy.
The FEC combination is used quite often. I was given just EC but many also have the FEC. These drugs are F=5-fluorouracil, E=epirubicin and C=cyclophosphamide.
Rest up now and get ready for June 13th. I shall be thinking of you.
Maryna8 is starting docetaxel (Taxotere) on June 11th, so the two of you will be doing chemotherapy together. She has already had the first part of her chemotherapy. She had doxorubicin (Adriamycin), and cyclophosphamide, (Cytoxan) = AC. Doxorubicin belongs to the same group as epirubicin.
I think, if I remember correctly, she may have had some Taxotere at first with this, but it was stopped. Please correct me, Mary, if I am wrong.
Marymargaret, how will you be having the drugs administered? Are you going to have them through a cannula or have you had some kind of port inserted?
Good luck to both of you.
Sylvia xxxx
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