Calling all triple negative breast cancer patients in the UK
Comments
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Hi Susie,
Early Spring and September are my favourite times. Yes, definitely feeling more hopeful, I've been told to be patient which would be so much easier during a wet Winter.
Do eyebrows ever grow back I wonder?
Enjoy a sunny London.
Love,
Gill X
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Hi Gill,
My eyebrows show no sign of growing back as yet. Eyelashes are maybe half grown.
Showers forecast today. This time of year I like to sing the song by the great Tom Lehrer: Poisoning Pigeons in the Park. 'When they see us coming the birdies all try and hide, but they still go for peanuts when coated with cyanide ...'
Susie x
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Hi Susie,
Had to look that up, it's on YouTube and still very funny.
Yep, raining here too.
I'd rather have eyebrows than eyelashes given the choice.
Gill X
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hi Gill
my eyelashes never came back like they were, i use a powder on them. no underarm hair at all now, i like that!
agree, eyebrows make a difference!
Also agree, this is a time of year to be outside digging in the dirt and fixing ravages of winter, frustrating to not be quite up to it. Patience is still a virtue I suppose.
Mary
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Hi Val
thanks for well wishes, my shoulder is making progress I think. In therapy now so usually am different degrees of sore. ice packs are my friend.
Tomorrow getting a knee injection, and the other knee has joined the pain party now, so hope to check that out too. , do you think any of these things aggravated by chemo? Or would have happened anyway? I had no especially painful places before, i do know that. maybe it doesnt matter anyway.
Hope warmer weather feels good to you!
love Mary
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Hello Gill,
I am responding to your post of March 31st.
I do agree with you that patients are often waiting too long after diagnosis for surgery. I think that this problem is getting worse because the NHS is definitely overwhelmed. We are definitely overpopulated.
It seems to be standard that there is at least a two week wait, perhaps longer now, between seeing a GP and being told it looks like breast cancer and actually getting a referral to the breast clinic to get proceedings going with scans etc. I do not know how this waiting problem is going to be resolved because of too much demand and insufficient staff on the front line.
As we have said so often, we all need to know our bodies and do our own regular breast examination to pick up on something not right in the early stages and get ourselves checked out. I have friends and acquaintances here who had small tumours, were hormonal positive and just had lumpectomies and radiotherapy. Their treatment was done so much faster by not having to have chemotherapy. One of them did have to have two lumpectomies to get clear margins. My tumour was large from the beginning so I had to have a mastectomy and would have had it anyway if I had been given a choice. A lumpectomy would have worried me for fear of what might be lurking in the remaining parts of the breast. It is all a personal choice but if you can avoid chemotherapy it is all for the better as far as I am concerned. I had no problems but there are many on these threads who certainly have had problems as you well know.
I do think that having big hospitals now instead of smaller ones and of course overuse of antibiotics has been the cause of superbugs and sepsis. I did mention in one of my posts a programme I listened to on the radio (Inside Health) which was about using pre-habilitation before treatment that was having good results. It was about good health checks, checking for deficiencies in vitamins etc., getting people to exercise, lose weight, healthy diets and so on. The idea is to make sure your patient is fit enough for surgery etc. It made sense to me rather than doing it after the treatment with rehabilitation. Doing both makes sense. I think my chemotherapy was fairly easy because I was fit and healthy when diagnosed and was actually told I should not have breast cancer.
I am glad to know you are making good progress.
Love.
Sylvia xxxx
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Hello helenlouise,
I just wanted to say thank you for your kind words. It definitely means a lot to me and makes doing the thread worthwhile.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
I saw your question about eyebrows. Mine grew a little over time but they have never come back to the shape and thickness that they were before chemotherapy. I have a full fringe so it does not notice so much. I just leave them alone but I do agree that in a way eyebrows define your face. I do not try to outline them because I think it will look strange as a I do not wear much make-up. As for eyelashes, mine are not as long as they were.
It will take time for every aspect of our body, inside and out, to get back to normal. Hair on the head probably grows back more quickly than anything else.
That is all for now.
Love.
Sylvia xxxx
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Hello Val,
Thank you for your kind words. They mean so much.
I am very attached to our present small group and am just so happy to help.
Take care of yourself.
Love.
Sylvia xxxx
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hey Sylvia
good news is so far tooth has no pain, so maybe root canal talk is over, hope so.
Suddenly Chris W is inundating us again, several posts to go through. i haven't gotten the issue of WDDTY you mentioned yet, we are definitely on different delivery times.
your Director job does sound full-time, I hope your work is appreciated. Fun time starting now working with the flowers.
I dont think I have developed any lymphedema thus far because of this surgery, big relief there.
As for Brexit, it is crazy-time. our politicians too seem to wrangle on one subject and in the meantime real serious things are happening that require adult supervision, who's minding the store?
will be glad to have 2 arms to use again, things are progressing. in therapy now, they manipulate my arm in all directions, still not allowed to raise or extend arm on my own.
thanks for all you do!
Love Mary
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Just back from seeing my lovely surgeon who was in a chatty mood. He says that when he was starting out in the mid 80s, they would not only take the whole breast and all the lymph nodes but a fair bit of chest muscle too -- all for a 1mm tumour! Things have really moved on.
He did a manual examination of both breasts and is very happy with them. He says that he will be happy to reduce the healthy breast to match in due course as there is a big difference in size now. I want a nice long summer of feeling completely well before I subject myself to further surgery. I was reading in The Times just this week that some breast patients do not even get their yearly mammograms scheduled after cancer, whereas I am getting such good follow-up. It truly is a postcode lottery.
Susie x
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Great news regarding my genetic testing:
BRCA1/2 Analyses with CancerNext-Expanded
NEGATIVE: No Clinically Significant Variants Detected
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Hello Viewfinder,
It was so good to hear your excellent news. It just shows there can be differences within families.
Love.
Sylvia xxxx
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Hello Susie,
I was pleased to read that you had good news from your manual breast examination.
I can understand that you want to enjoy spring and summer and be free of any possible surgery in the future. We all need to get out and enjoy these two seasons.
We are having some nice weather in Exmouth but we are still getting hard frosts in the morning.
It is true that cancer treatment in the past was drastic and brutal. I remember my maternal grandmother having a mastectomy and radiotherapy in the 1950s. It still spread and she died of it.
As for treatment of breast cancer in this country, I do think it is a postcode lottery and with unacceptable waiting times at all points. Patients have to fight their corner, be fully informed and pushing for what they want.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post.
I was glad to read that you have no pain so far from your tooth. I do hope you are able to avoid root canal treatment. I do not think it makes much sense and seems to cause problems later on.
The Directors' work is full time and can be quite stressful if you get troublesome residents. Raymond and I have taken it in turns to do this work for the past 17+ years, in fact that is ever since we moved in. you have to be re-elected each year. This morning I am meeting with the tree surgeon who has to inspect the trees in the grounds with preservation orders on them and tell me what work he thinks needs to be done on them. Permission then has to be obtained from the Council, even though these are private grounds.
You are right about Chris W. The emails are coming too quickly. I have read them but have not yet looked at the parts to investigate. I also have to reread WDDTY magazine.
I would be interested to know what your routine is with reference to taking care of yourself and trying to prevent recurrence etc. I do have vitamins that I take regularly and I also eat fermented foods such as sauerkraut and plain soy yoghurt and take a daily probiotic. I do think all problems begin in the gut in the mouth and proceed down to the other gut. I believe that unhealthy bacteria in both starts off the process of inflammation which leads to chronic diseases, including cancer.
I do hope you do not develop lymphoedema.
As for Brexit, I do not think it will happen. In order to get it we need a government that believes in it, indeed a Parliament that believes in it. We have a Remainer Parliament. We could be heading for another referendum and Leave will not be on the agenda! I think our Parliament is dumbed down and their behaviour is deplorable.
Many thanks for your kind words.
Love.
Sylvia xxxx
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Hello all
Mary it's nice to know that you are recovering well from your surgery.
Gill I am sure with your positive attitude you will surely come through and forget all the difficulties you have faced.
Viewfinder is it necessary to have genetic testing. My doctor did not recommend. Is it a must for TNBC . I do not know. I have two daughters.
Sylvia you have said about supplements you take. I do take few supplements which the doctor has recommended. Other than that I am a vegetarian . We have curries of different vegetables and pulses with lot of turmeric.I wonder if it is safe to use microwave oven. Do you use it? Do you all eat gluten free diet. It is very hard for me as I am fond of roti which is made of wheat flour. I am also fond of sweets and in our all festivals we cannot do without them. All my favourite dishes are a big No No.
Love jags
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Hi Sylvia and all,
Results from biopsy show skin mets.
. At this point still local recurrence. My surgeon recommended surgery but did add it's is going to be like catching cockroaches. Would have preferred a more tasteful anology but point taken. I have reserved my decision on surgery until I have been restaged with CT and bone scan schedule for next Wednesday and then see oncologis the following Tuesday.
I am very disappointed but knew something was wrong. My chest and arm just don't feel right. Once I have seen my oncologist I will be better informed to decide what happens next.
Does anyone know more about skin mets?
I have done and am still doing my due diligence. Surgeon added it was very usual - so soon after treatment - and very aggressive. I am numb!
I hate the waiting game but know it's part of any cancer journey. More importantly I am not sick so will try not to stress and keep living the good life!
Hoping that you are well and sending lots of good wishes your way. Xxx
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Hello Sylvia,
I didn't have to wait for any of my treatment, let alone 'unacceptable waiting times'. We have a lot of provision here in London (evidenced by my having had treatment at no fewer than five hospitals last year). As I say, postcode lottery.
Susie xx
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Hello Jags,
Thank you for your post. I was interested to know that you are a vegetarian and I am sure those curries with lots of vegetables, pulses and turmeric must be very healthy. I was wondering what sort of rice you have with them. Here in the UK we are told to avoid white rice and eat wholegrain brown rice or brown basmati rice. I am not one for eating out much but in the restaurants it seems to be all processed white rice.
I eat lots of fruit and vegetables but have them with some oily fish at the moment. I do have some eggs (organic) from time to time.
Most days I have vegetable based meals with beans and pulses. I also eat plenty of nuts and seeds and plain unsweetened soy yoghurt and drink unsweetened almond drink or unsweetened soy drink. I eat no meat, poultry or dairy products. I eat mainly a Mediterranean/Rainbow diet.
I do not use a microwave and do remember from years ago reading that they should be avoided, but I am sure that a lot of people in this country use them a lot.
I do not believe in the latest fad of gluten free food, unless you have an illness or allergy from it and have to avoid it. From what I have seen on the supermarket shelves, largely processed long shelf-life food, I think it is overpriced and not nutritious.
What exactly is a roti? If you are not allergic to wheat I cannot see what is wrong with eating a roti.
If you have been following the thread since inception, you will know that we have had lots of discussions about sugar. It is considered to be very bad for us and especially for cancer patients. The information is that sugar feeds cancer. I steer clear of it and do not miss it. I do not have a sweet tooth. All sweets, cakes, biscuits etc. are considered junk food.
Here in the UK we have an epidemic of obese people and people with diabetes.
I hope this helps.
Love.
Sylvia xxxx
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Hello Helenlouise,
I was sorry to read that your biopsy has shown skin mets, but hang on to the fact that it is still a local recurrence. If it is a local recurrence I was wondering whether it could be treated with radiotherapy or have you already had too much? I am not sure how skin mets is dealt with through surgery. I shall try to do a bit of research.
You are right to get a CT and bone scan before deciding about surgery. At least it is not too long to wait and I feel that your oncologist will be the one to advise you on what can be done. You definitely need that appointment with the oncologist.
I do not quite understand what your surgeon means with his words, but to me they do not sound very helpful.
I know you will be frightened but try to be as calm as you can and wait for the results of the scans and wait to see what your oncologist has to say. We all know that the waiting game is very difficult, so try to keep busy doing relaxing and enjoyable things.
Keep optimistic and know that you have a group of people here who will help you through all this.
Thinking of you.
Love.
Sylvia xxxx
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Hello Susie,
I have run out of time but I shall answer tomorrow.
Love.
Sylvia xxxx
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Hello Susie,
With reference to your last post, I was wondering how you felt about having your treatment in five different hospitals. Did you feel that the consultants did not really get to know you but you were happy with your treatment despite this? I ask this because I had everything done at the RD&E and was in the care really of just three women, the oncologist, the breast cancer consultant/surgeon/endocrinologist and a breast cancer care nurse. The oncologist was in charge of my chemotherapy treatment and also the radiotherapy treatment. I felt that they got to know me.
Are you taking much notice of the madness that the Brexit referendum has become?
What are you reading these days?
We have been talking a lot about diet. Are you strict with yours? Are you taking any supplements?
Love.
Sylvia xxxx
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Hi Sylvia,
The doctors also move between hospitals, so I have had the same surgeon and oncologist all through. I certainly wouldn't have liked to be shifted between doctors. Ditto my Breast Nurse who remains my first point of contact.
I have basically been watching and waiting to see what will happen over Brexit for almost 3 years now. Almost everything in the papers and on the TV news remains speculation. Anything is still possible from No Deal to not leaving -- which beggars belief at this stage. There's that Chinese curse about living in interesting times.
I have just finished reading Midwinter Break by Bernard MacLAverty, about a middle-aged couple in a long but now failing marriage. It's for book club on Sunday. Beautifully written but very melancholy. I'm sure we've all met couples like that who seem to have nothing left to keep them together but are afraid of being alone. My marriage was very happy and ended in the old-fashioned way, when death parted us.
I have been trying to eat more healthily since New Year. It started well and I have lost about 18lbs but I am finding it harder at the moment. I must knuckle down again. My BP is down. I take Vitamin D on instructions from the hospital and am also taking Glucosamine/chondriatine as a couple of my fingers are getting arthritic, on the top joint, which doesn't seem to have a name.
Susie
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Hi helenlouise
i am so sorry you are being bothered with skin mets, i dont know much about it but I was told to often feel along surgery site for any bumps. Your attitude is very positive, that can only help while you are waiting for appointments and decisions.
I will think of you next Wednesday as you go thru tests, at least they are not making you wait too long!
I am curious what you mean about chest and arm not feeling right?
Is Down-Under having autumn now?
Talk soon, love
Mary
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Hi Sylvia
I saw orthopedic doc yesterday, she said 2 more weeks of this sling, i may try to post a pic of it. quite large but light.
I have not got very far into Chris W either, my life is now going to therapy sessions and doing the daily things of life. so slow, i can tell the therapy is loosening things up and not hurting much thus far.
Odd about my previously-offending tooth, when my sinuses are bothering me it aches a bit, otherwise not. I'll take that!
It does sound as if your Director job is quite detailed, I can't imagine there is anyone who could do it better. troublesome residents would be rough, can you evict them? I think sometimes that is quite difficult.
My preferred daily routine is fruit with soy yogurt and maybe walnuts and some flaxseed /organic bone broth powder and cinnamon in the morning after coffee. I have a very large salad every day with nice organic vegetables I can find. I do eat meat, preferably minimally or not-at-all processed, venison, chicken, sometimes bison and wild-caught salmon and cod. I really like all veggies, sweet potatoes, asparagus (my own is starting to come up!) , I do not eat corn, it bothers me. I very much like beans of all kinds but in small doses, and I very much like lentils. I have a shelf for supplements and take probiotic, turmeric, and too many to go into here. I like kim-chi and tempeh very much, and I like eggs and also just egg whites. My body seems to crave protein. I also like popcorn, and I drink a lot of water. I do try not to become stressed over things, and sometimes I succeed.
So far I have no evidence of lymphedema, fingers crossed.
I dont think Brexit will happen either, it would require too much effort from these politicians. So much easier to just kick the can down the road.
Closing for now, love, Mary
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HI Mary
My orthopedic doctor says it's directly related to chemo. He says he has more than a few clients with accelerated arthritis, to the knees and hip.
I had no problems with my hip prior to DX. I did have a knee injury and got injections just for that knee. After radiation, both knees and then my hip/groin on the injured knee side started with a vengeance.
I'm hoping the hip procedure works for a while. My knee injections work like a charm. This last time nothing helped the hip. Prior to this, the hip would calm down with the knee injection.
glucosimine/chondroitin/msm has lessened my pain. I take 3 capsules a day. I saw a difference in my pain in 2 days. My vitamin D3 was low, so I have a prescription supplement for that as well. Folks in another forum alerted me to some of these factors.
Val
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Hi Mary
Thank you for your reply. I have felt for some weeks that things didn't feel right. I have cording that has reappeared in my armpit which I thought had disappeared. Maybe it's the lymph not happy. I don't think I have any lymphedema. If I do it is minor. I just have had a sense things don't feel right. The radiologist that did my biopsy said you have to go with your gut and if things don't feel right pursue it. We need all pieces of the puzzle and how you are feeling is part of that.
Yes waiting is something we all endure when hanging out for tests and there results in order to move forward. So my husband and I are busy in the garden and catching up with friends which is what we would be doing regardless.
I hope you are doing well xxx -
Hi Val
I am not surprised that your doc thinks your knee and hip problems are accelerated by chemo, I am surprised he gets the connection. I am on my 2nd ortho doc and neither of them seem to get that. We live in our bodies and know what has happened. I think chemo does a number on either the supporting muscle tissue, tendon, ligaments or the arthritic condition itself.
I have been getting knee injections in rt. knee for some time, in a couple of weeks I will also get one in left knee. I am in therapy for rotator cuff surgery now, there were also torn bicep muscles which I believe happened near the end of chemo when all the pain started. Before chemo I only had pain from Degenerative Disk, and nothing unbearable. Now I have days when my entire body hurts, from head to toes, nothing to do but ride it out and hope the next day is better. If I complain I am often told "oh, but you are older now!" Which is true, but doesn't seem to be the whole explanation, and I suppose it doesn't matter to anyone but me.
I haven't tried glucosamine/chondroitin but will look into it. I do take Vitamin D and when last tested I had a good number. i was quite low when I came out of chemo.
We have had so many rainy, gloomy days; I hope we all get some warm spring days soon!
Talk later, love
Mary
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Hi Mary,
As usual, I'm very behind in replying to posts. My email responses, or lack of, are equally disgraceful.
I hope you're healing well after surgery and will be free of your sling very soon. You've had a tough year. It seems very unfair to have to suffer debilitating pain after beating TNBC.
I was interested to read Val's post as I'm beginning to hear more and more about arthritis post chemotherapy. I have a friend in Canada who has survived metaplastic cancer after a local recurrence. She had surgery twice, followed by aggressive chemotherapy after each surgery and now has arthritis. So many patients will have reported this to their oncologists, surgeons and general practitioners, so why aren't we warned about this possibility? I'm beginning to think that medics are in some sort of secret society.
Ah well, Spring is here and sunshine always helps.
Thank you for the candles and prayers. I continue to light candles for you and everyone on the thread.
Love,
Gill X
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Hi Helenlouise,
I'm so sorry that you now have to worry about skin mets. Your surgeon was extremely unhelpful. In fact, he doesn't know what's going on until you've had further tests. It's a local recurrence as far as you know. I have a friend who has survived metaplastic breast cancer after a local recurrence along the line of her scar, so the pessimism from your surgeon seems uncalled for.
Sending positive thoughts for your tests on Wednesday. Knowing exactly what's going on will help. Uncertainty is always difficult, though you seem to be coping well.
Love,
Gill X
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