Calling all triple negative breast cancer patients in the UK
Comments
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Sylvia,
I'm sorry you have to wait until Monday to have the mammogram done, however, I am sure if something were different you would have felt it by now. I know I am very vigilant now about my remaining breast. I hope you don't worry too much this weekend. It was recommended in a seminar I listened to about fear of recurrence to limit thinking about breast cancer concerns if possible to thirty minutes a day- I've tried to follow this and sometimes it helps. Love, Christina
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Hello Maria_Malta
Thank you for your kind thoughts. I shall let you know how I get on on Monday. We shall all be thinking of you on October 5th when you undergo surgery. Take great care.Best wishes
Sylvia.0 -
Hello Suze35
Thank you for your kind thoughts. It is so good of you to think of me when you are going through so much. You have tremendous courage and we all admire you for it. I do hope that you will be able to get on a clinical trial soon.I was wondering how old you are as I am trying to keep a record of the age in general of those with TNBC.
I was looking at some of the stage 4 threads and saw that the receptor status of these groups are a mixture. Some of them are TNBC, some triple +ve and some ER+, PR-, HER2- and some ER+, PR+, HER2-. It makes me feel that it is the luck of the draw on the whole with receptors and with prognosis.
When I was at the hospital yesterday, before I was told about the denseness around the nipple, I was asked whether I wanted to be discharged or continue with check ups. When I said I would quite like to stay to complete ten years, I was told that was no problem.
I also asked about new or targeted therapy for TNBC and whether there was any future for PARP inhibitors, I was told there was nothing in the pipeline for TNBC. That was, of course, for the UK. We are not renowned for good cancer treatment.
I was also surprised by the comment "you probably know more than I do"! She said I was an expert patient!!
I hope you are having a lovely weekend with your three children and your husband.
Best wishes
Sylvia0 -
Hello mccrimmon324
Thank you for your kind words and your reassurance. I shall be so glad when Monday is over. I am trying to keep busy so that Monday comes quickly.Do you know when you will be starting your radiotherapy? Take care of your skin and everything should be alright.
I hope you are having a good weekend.
Best wishes
Sylvia0 -
Hello bak94
Thank you so much for your kind words and reassurance.I was interested to read about how your hair is growing back. Do not worry too much about how it looks initially and just give it time to settle down.
You are getting close to the end of your chemotherapy, so just hang in there. I saw that your bilateral mastectomy will be on November 30th. It seems a long way away, but the time will soon go.
Keep well.
Best wishes
Sylvia0 -
Hello christina1961
Thank you for your kind words and your reassurance. I am just longing for Monday to come so that I can have a mammogram and an ultrasound and face up to whatever I am told. I cannot see or feel anything different in my remaining breast, but obviously my new doctor thought I should get the breast checked. I do not like too many mammograms and this will be the second this year, but I have no choice. I just feel that the very treatment that keeps us alive also causes further problems in time.I do hope you will have good news on October 4th when you have your CT and bone scans.
It looks as though this coming week is a busy time for our little group. I shall be at the hospital on Monday, you will be at the hospital on Tuesday, Maria_Malta will be having surgery on Wednesday and BernieEllen, mccrimmon324 and you will be continuing with radiotherapy, bak94 is continuing chemotherapy and suze35 waits for a clinical trial as she continues with her treatment.
Best wishes
Sylvia.0 -
Hello BernieEllen
Thank you for thinking of me and for your reassuring words. I do hope that you are enjoying your two days off from radiotherapy and that all will continue well next week. I shall be thinking of you.Best wishes
Sylvia0 -
Hello Josephine and TEK2009 (Tessa)
We have not heard from either of you in a while and I just wanted to say that I hope you are both as well as can be expected and not in too much pain. If you are able, please let us know how you are. I am sure we all miss you on this thread.Best wishes
Sylvia0 -
Sylvia, good luck for tomorrow...thinking of you!
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Sylvia, thinking of you as you await your upcoming tests. You are an expert patient and agree that you have so much knowledge.
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Hi Syylvia, thinking of you today
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Hello BernieEllen, Maria_Malta and bak94
Thank you so much for your kind thoughts. I am overwhelmed that you can think of me when you have so much going on with your own treatment. I am so proud of our little group and the way we stick together.BernieEllen, good luck with your radiotherapy this week.
Maria_Malta, I shall be thinking of you on Wednesday when you have your surgery. I hope you do not have to stay in hospital too long. Usually they keep you in until the drains are clear, but I have heard of people going home with the drains.
bak94, you amaze me with the support you give to others when you are going through so much. I read your post on TNS and was glad to know that you could vent your feelings about everything going on in your life. I do hope that you can find some help to get you and your husband through this very difficult time. I cannot believe the attitude of your employer. There seems to be no compassion or understanding. People who have not been through breast cancer have no idea of the physical and psychological demands that it makes on people. You will certainly need to take it easy both before and after your surgery and I think the demands of your job will be too much. I do not know if you have the equivalent of the Citizens Advice Bureaus that we have here. These services deal with all kinds of problems including how to get financial help during illnesses such as cancer. Say hello to your husband from me and tell him that you will come through all of this and will be all the stronger.
Look after yourselves.
I am now counting the hours until my hospital appointment. It is 9:00 am here in the UK and my appointment is at 3:00 pm this afternoon, six hours to go! I am thinking this is not a good way to start the week.
Love and best wishes to all of you.
Sylvia.0 -
Good Luck Sylvia!
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Maria_Malta, all the best for wednesday
bak94 keep on fighting.
mccrimmon, how are you feeling now?
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Bernie,
I'm feeling pretty good, today is my first day back to work since my last treatment. Have a lot to catch up on so it's keeping me busy. Just waiting for the last of the side effects to subside. How are you doing with the radiation? Do you have much longer to go?
Good luck on Wednesday Maria_Malta!
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Hello BernieEllen, Maria_Malta, bak94, christina1961, Suze35 and mccrimmon324 and anyone I may have missed out! Thank you for all your posts.
I had good news today! First of all I had a mammogram and the radiologist told me immediately that there was nothing showing up on the mammogram. I then had to sit outside the ultrasound room and wait for the consultant. As I sat my mind was immediately cast back to June 2005 when I sat in the same place at the time of my original diagnosis. I knew then, before the ultrasound and biopsy that I had breast cancer and I was going through procedure. At that time my emotions were completely out of control and the tears flowed. I asked for my husband to be brought in to sit with me. Today I was calm but very afraid. The consultant came out to get me and I immediately liked her. She gave me a thorough examination and said that everything was fine and that there was no change in my mammogram from January this year. I was so relieved. Going through this again really brought back 2005 and I realised once again the emotional toll that going through cancer takes on you.
I hope everyone has a good week with their treatments and let us all keep in close contact.
Best wishes
Sylvia0 -
YAY!!!! Sylvia!!!!!!!!
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Sylvia, I popped on here to check on you and see if you had results back! I'm so happy for you! I hope you have a fabulous week!
Christina
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Sylvia....BRILLIANT news, I'm so happy for you!!!
Sylvia, mccrimmon & BernieEllen, thanks for yr kind wishes, but I was really disappointed today to be told that my bs is going to have to go abroad on Wednesday, and if I still want to be operated by him,(rather than by his replacements) I'll have to wait until the following Wednesday, ie 12th October...you can imagine I was pretty upset, as I'd geared myself up for the op. However, I've got used to this surgeon, and like and trust him, so I'm going to have to wait a week...what a drag
On the other hand, he told me of a new procedure he'd been introduced to at a conference last week called the 'Goldilocks' mastectomy, for women with big breasts who are having a mastectomy but who do not wish/cannot have implants. Dieps, reconstruction, etc... By making the incision in a particular way, the surgeon leaves a large flap under the breast, which, after the removal of all the breast tissue, is folded in such a way as to create a small bump, or 'breast'. Not sure if I'm going to go for it, but I have the time to read up about it, and I'm quite interested.
All the best to all of you...
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hi to you Sylvia - best news ever
mccrimmonj - day 6 of 30 rads. but still suuffering a bit from chemo SE - onwards
To all of you - big hugs
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Sylvia, I am so happy to hear your good news!!!! I am sure it was very stressful, I am also glad you were able to remain calm, as that is not an easy task sometimes! Yipeeee!!!!!!! I hope you did celebrate tonight!
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Hello mccrimmon324, christina1961, Maria_Malta, BernieEllen, bak94.
Thank you for your posts. You are such supportive women, and I feel very close to you.Mccrimmon324 - I do hope all will go well this week for you with your radiotherapy. Remember to get plenty of rest.
Christina1961 - I do hope all will go well with your CT and bone scan today. I do hope that all is going well with the radiotherapy.
Maria_Malta - I am so sorry that you will not be having your surgery on Wednesday as planned. I do not think that was very acceptable behaviour on the part of your consultant surgeon. It must be such a let down as you will have been all keyed up for your surgery tomorrow. The system should work for the patient, not for the doctor. All this waiting around is stressful and exhausting and not good for the immune system. I liked your mournful smiley!!!
I was interested to know about the Goldilocks mastectomy. I do not think it is something I would go for. It is my own view but I have great concerns about reconstruction surgery.
Try to keep busy to pass the time.
BernieEllen - Hope all will go well this week with radiotherapy.
Bak94 - Thank you for your support. I did celebrate in my own quiet way. I came back from the hospital exhausted and all I wanted to do was sit and be quiet in my mind. My husband and I will go out for lunch on Thursday with a friend.
I do hope that everything will resolve itself for you. Take great care of yourself as you go through the last months of chemotherapy and prepare for surgery.
Suze35 - How are you coping? Do you have any news about a clinical trial?
Thinking of you.
Best wishes to you all.
Sylvia0 -
Hello Sylvia
I have just caught up with this and your good news.....phew!
So pleased that all is well ......scares like that are not nice, so sorry you had to go through a nerve-wracking time.
Take care,
Love,
Sam
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Hello Sam52,
Thank you for your post. I did have a pretty stressful weekend and I was imagining all sorts of things. We can never take anything for granted.
I hope that you had a good weekend with your father and that you found him well.
If you know anyone who can be helped by our thread, please tell them to post.
I wish I had known about breast cancer.org when I was going through treatment.
Love,
Sylvia.
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Sorry Marie-Malta, i missed reading your post. Shame about the delay for your surgery.
Feeling as bit tender after rads today.
Good news, hubby home tomorrow - two days early
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Hello everyone
I thought it might be a good idea if christina1961, mccrimmon 324 and BernieEllen could describe the different side effects they are experiencing while going through radiotherapy. This would be useful for each of you and for everybody reading the thread, especially those newly diagnosed.
To BernieEllen, sorry to learn that you are feeling tender. Make sure you keep well moisturised. I was glad to know that your husband will be home tomorrow to support you.
Best wishes
Sylvia
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Sylvia,
I'm still a few weeks until I start radiation. I don't know why I'm so nervous about it. I've heard its a breeze compared to chemo. Maybe I'm just so afraid of burning to a crisp.
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Hello mccrimmon (Heather)
I do apologise. I thought you had already started radiotherapy. You do not have to be afraid of radiotherapy. It is much easier than chemotherapy and the actual sessions are so short. All you have to do is keep the skin well moisturised with a non-perfumed moisturiser, use aqueous cream to wash in, rather than un-perfumed soap if you have to, and do not have the water too hot going over your skin. Do not go out in the sun and keep the whole upper section of the body covered if you are outside.
The most difficult part is having to go to the hospital five days a week for several weeks.
Best wishes
Sylvia0 -
I guess the nice thing about being here in Florida and I don't know about the rest of the states but where we live, we are surrounded by surgery centers, there is a cancer center down the road and tons of radiation centers, so thru out this whole thing I have yet to go to a hospital. My onc says that I can either go to a radiation place by home or where I work which is about an hour away.
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Good idea Sylvia, i'll start. Today was rads no7 of 30, and as i said feeling a bit tender in that area. Over here no creams or lotions, wash with warm water only and pat then air dry. If blisters and burns occur then we will be treated by the burns unit. That makes sense to me. Normally we would not treat a burn with cream of lotions only burn gel pads. It can be uncomfortable when the markers and realignments are being done but that is only one day per week. Other than that, i'm finding it hard in the sense that i an becoming friendly with the people on the rads bus because we are together every day and sharing. That did not happen when i was having chemo. It is an hours journey to the rads clinic, a bus is provided. At the moment three elder gents and myself.
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