Calling all triple negative breast cancer patients in the UK
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Hi Mary,
Always good to hear from you and all the interesting things you get up to. Don't envy you the house full of workmen and all that dust though. My last ordeal , via new windows, ended fairly quickly and the men told me that I'd miss them once they'd gone. I didn't. Having workmen around in England means making endless cups of tea and coffee and having in depth discussions about their wives or misbehaving teenagers. Younger men are worse - disappointing relationships feature heavily. Maybe I try too hard to be a good listener or perhaps they mistake me for an older lady with the wisdom of a lifetime to impart. Is it just me, or do men in general like to stand around gossiping far more than we do?
I'm impressed by the amount of aftercare you've received post cancer treatment. It must have given you a sense of security or at least a sense of being cared for and a quick response to any worrying symptoms. My hospital only does an annual checkup for two years and that's just a physical examination and a mammogram. I wanted an ultrasound on my mastectomy side, but these are no longer offered. Annual mammograms are only offered for 5 years and then it's a mammogram once every three years.
How is your shoulder doing now? You don't mention it so I'm guessing that it's reasonably okay.
Take care.
Love,
Gill xxx
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Hello Sylvia,
I'm back home after the most relaxing holiday I've had for many years. Only an hour's drive away, beautiful fairly quiet beaches and a stunning 15th or 16th century Hall with all the original features to stay in, plus four acres of beautiful gardens to wander around whenever I felt like it. Michael went for a run around the country lanes for an hour each morning while I had a leisurely bath with a view over the gardens. The ghost didn't bother us once!
We arrived home on Tuesday evening feeling restored and refreshed, however, I coughed for much of last night and woke up with a sore throat and headache. Michael isn't feeling a hundred percent either. We just have to hope that we don't have the latest variant of the never ending coronavirus that's sweeping across the whole of the UK.
The internet wasn't very consistent where we were staying, which meant that Parliamentary committees and debates weren't available. Just as well! I see that the Prime Minister is conspicuous by his absence as is usually the case during a crisis. We are the worst performing economy in the G7 apart from Russia and the trend is ever downwards. It also seems likely that a national strike is on the cards before long. How much longer before Tory backbenchers revolt or simply walk out of the House during Prime Minister's Questions? The economy and Ukraine have grabbed the headlines and pushed the NHS off the agenda, yet more doctors and nurses resigned this month than ever before. No extra (promised) training places were made available for doctors or dentists. Will people have to travel to Europe for dental care? My daughter and son-in-law still can't find a dentist, though they did find one to look after my grandchildren's teeth. What a horrible mess England has become.
I can feel the benefits of a good holiday disappearing far too quickly.
Wishing you and Raymond a peaceful and healthy week.
Love,
Gill xxx
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Thanks Sylvia and Gill,
I think one of the positive things that has happened was when a friend who has finished treatment and surgery about a year ago, suggested thinking about chemo positively. Yes, it's toxic and very hard on the body. But, it's having the desired effect on my cancer. Since that advice, and even though I've had some significant side effects, I've tried (despite feeling nervous about infusions) to think of the chemo as something I need to eradicate the cancer. I guess that's easier to say now that it's over, but I have tried to stay fairly positive about the chemicals and that has helped.
I'm getting over the anger and fear about my husband's COVID. It helps that we've isolated and worn masks, and especially since I have not had any symptoms. I think most people are HOPING that COVID is past, though if you read anything in the paper or online, it's rising again. My husband said that a large number of people who attended his high school reunion have come down with symptoms. I just roll my eyes at him now. He's not really the type to believe that COVID could actually be over. But he also had the desire to attend his reunion, no matter how misguided that may have been.
I'm in the surgery mode right now. I've got to contact my surgeon and radiation doctor and let them know that I'm leaning heavily toward lumpectomy. The surgeon wanted to schedule 3 weeks after my last infusion, which happens to be the week of my birthday. Not that I was planning a party or anything. But the more I think about it, the more I don't really mind doing it that week. I just want to keep moving forward.
I hope Kelsey's mother is doing okay. She hasn't posted in a while. I hope all is okay with her and with all of you.
Love, Sue
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Hi Sue, Mary, Sylvia and all!
Mary, I wanted to thank you for your message the other day, about you being 9 years or so clear, that’s amazing! I meant to respond but I’ve started a new job and been so busy!
My mother is doing amazing thank you Sue! She went to the pub last night with her friends and sat outside to avoid infection but I was so glad that she got out, she had her chemo yesterday and now only has 3 rounds left! I’m so excited, I cannot wait for the day that I hear she is clear! It will be the best day ever. So she has 3 weeks til the chemo is over, then has to wait 6 weeks for surgery then radiotherapy after, we don’t know how long she has to have that fo
She does worry me sometimes, she was very anxious this morning because she told me she watched a show called 24 hours in A&E and a boy on there was saying his mum had breast cancer and she had chemo and all treatment and was clear for a while but it came back a while after and she passed away, I told her to ignore that because many people like you guys here stay clear!
So guys, My mum wanted to ask if it is best to opt for a double mastectomy with implants if they will do it, they have offered a lumpectomy so far as the lump is so small but she is wondering is it safer to get the double mastectomy to prevent it coming back? Will they do it even though she does not have the bracket gene? We are going to ask at her next oncology appointment.
I initially made this account for my mum to use which is why my username is under Bernie as her name is Bernadette but she isn’t that great on the internet haha so I read all your guys post to her and stuff ❤️0 -
Hi berniek,
Glad that your mum's doing so well. Please tell her to be careful when out and about as the latest omicron variant is so infectious, much more so than the previous version. In fact I'm going to test myself this morning as I either have a normal cold or covid....again. your mum wouldn't want her treatment to be delayed.
I chose to have a mastectomy because I had the metaplastic version of triple negative cancer which is notoriously chemotherapy resistant. Triple negative tumours generally respond extremely well to chemotherapy. I wanted the whole breast gone as I have a fairly small bust with a 2.4 cm tumour and I was concerned about cancer free margins being too small - even with a mastectomy my margin was only 4mm. I wasn't offered a double mastectomy as I have no genetic markers or family history of breast cancer. I opted to manage without reconstruction as I was concerned that if the tumour returned I probably wouldn't be able to see or feel it, however, in another year I will be almost 5 years out and am considering an implant. The prosthesis offered by the hospital is good enough, but my bra rides up on the mastectomy side and I'm very conscious of this.
As for the little boy whose mother had a recurrence and died, well yes it can happen, but your mum needs to remember that no two cases are the same. The boy's mother may have only had treatment at a very late stage, she may have had the brca gene, she may have had a much more aggressive form of breast cancer, her health may have been poor even before she developed breast cancer, she may have had advanced breast cancer with nodes affected before her treatment began......and so on. Your mum will be worried and I'm afraid that she will probably have worries about recurrence for the rest of her life, I think most of us here have this fear at the back of our minds, but it does become less present and we're mostly able to get on with our lives. It's very early days for your mum and Sue, life will get better.
Good luck to you and your mum, tell your mum that she's doing well and not compare her situation with that of others. The media tend to like the sad stories about breast cancer - remember that the vast majority of breast cancer patients don't have a recurrence and don't die of breast cancer, but these women never make the news.
Love,
Gill xxx
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Hi Sue,
Yes, men like their reunions! He's a great support to you, so I'm sure you've forgiven him.
You really sound excited about getting the surgery out of the way, It's such a relief. The decision between lumpectomy and mastectomy isn't an easy one, but you've explored the pros and cons very carefully and I think you'll make the right decision for you. If I'd have had plain triple negative I'd have opted for lumpectomy, with metaplastic I felt that mastectomy would be better. Of course, I'll never know if I made the right choice. I do know that I'm very fed up with wearing a prosthesis when I go out - don't bother when at home.
Keep looking forward. You've weathered the worst of the storm.
Love,
Gill xxx
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Hello Gill,
I was glad to read that you had a relaxing holiday, but sorry to read that you and Michael are now not feeling very well. I do hope it is just a cold.
I saw only a bit of PMQs and found it pretty disgusting. It showed Raab standing in as deputy PM winking at Angela Rayner standing in for Keir Starmer. I thought it was shameful and that he should have been sent out. The country is in complete chaos and the Parliament channel is not worth watching. I think you would really appreciate the book that I have just finished reading. It is entitled The Social Distance Between Us – How Remote Politics Wrecked Britain by Darren McGarvey. The last chapter shows all that needs to be done to change this country for the better and start to bring an end to the class system and inequality.
We need to get rid of Boris Johnson before he starts WW3 to save his own skin. He should be made to resign.
By the way, the author I mentioned is also the Orwell Prize-Winning Author of the book Poverty Safari, which I am going to try to obtain.
That is all for now. Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sue and Kelsey,
I think Gill has said it all and I have nothing to add.
Keep looking ahead and remain positive.
We are all different so none of us knows what the future will bring. Live each day fully.
Do not take any risks.
Love and best wishes.
Sylvia xxxx
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Hello Everyone,
Not great news--I have COVID. I came down with symptoms on Friday. My fever escalated and so my oncologist sent me to the hospital. The ER doc got special permission to give me a new drug. They consulted with my onc and agreed to infuse it. Then then sent me home. Three days later and I feel much better than I did on Friday. I'm actually up and able to function a little bit. Feeling COVID and Chemo side effects at that same time isn't good. But I feel a little better each day.
I've been so careful during the last 6 months. I haven't gone out or seen many people face to face. I wear a mask whenever I leave my house. My husband made a bad decision, feeling like the rest of this country, that the virus is done now. Our numbers are still up and down, so I don't know why people think that.
I'm getting excited for surgery and radiation to be done--I'm guessing surgery will be the end of this month because my birthday happens to fall on the 3 week time period after chemo. The surgeon didn't want me to be in surgery on my birthday. Radiation will follow a few weeks after surgery.
I'm leaning toward the lumpectomy because the chemo has done its job and has shrunk the tumor and I have no genetic markers for breast cancer. I'm not a fan of hospitals or surgery and was not looking forward to the multiple revisits to surgery for mastectomy and reconstruction. I also read that recurrence can happen in chest tissue after mastectomy. Has anyone else heard that??
Stay well everyone! Love, Sue
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Hello Sylvia,
I've tested negative to covid, probably have a mild cold and headache. An increasing number of hospital staff are testing positive and on sick leave. Heaven help those needing life saving treatment. Still no plans for dealing with the waiting lists. At last Johnson's 40 new hospitals, (or lack of) is being discussed openly. Neither you nor I expected to see any new hospitals at all, so weren't disappointed. I can't understand why so few Tory MPs are standing up in the House and speaking against Johnson. Conservative backbenchers are shouting, jeering and generally drowning the opposition and getting away with it. As for Raab winking at Angela Rayner and calling her a champagne socialist for attending the opera! Clearly those of us of humble origins should know our place and stay well away from culture lest we spoil it for our betters.
I agree with you about Johnson dragging us into World War 3, he'll do anything to stay in power. He's behaving like a dangerous madman, completely unhinged. It's high time Parliament introduced regular compulsory testing for illegal drugs.
The Darren McGarvey book sounds interesting, I admire anyone who can come up with a workable solution to ending inequality and the appalling social class divide. I can't see a way forward while ordinary working people keep voting for more of the same - perhaps tackling the foreign owned right wing press would be a start?
Not much to report from the world of breast cancer at present.
Try to have a peaceful week, put some time aside just for Raymond and yourself.
Love,
Gill xxx
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Hi Sue,
I think it was inevitable that you'd be infected, the latest variant of Omicron is the most infectious yet. Interesting that you were given the latest treatment, do you know what the drug was? I'm very glad it worked so well. Covid and chemo is not a good combination.
I can completely understand that you're probably going to go with lumpectomy. Chemotherapy has worked well in shrinking the tumour and I agree with you about multiple surgeries with mastectomy and reconstruction. Cancer can return after mastectomy or lumpectomy, though your surgeon will ensure that you have clear margins. If the pathology report shows that margins are not clear you'll need more surgery. I've left reconstruction until I can be reasonably sure that my cancer has gone. I felt then and still feel that immediate reconstruction could obscure the return of a lump.
Hope you are completely free if covid very soon.
Love,
Gill xxx
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Thank you, Gill,
I'm feeling much better on the COVID front but now the effects of my final chemo have kicked in. But I can feel my body getting a little better every day and that helps me to be positive. The drug that they gave me is bebtelovimab. I hope that I've spelled it correctly. I read a little bit about it. I try not to go on research overload because it would frighten me even more. All I know is that it worked and I have improved a lot with the COVID symptoms. No fevers. Today I have infrequent cough and congestion.
Otherwise, I'm counting the days until surgery.
I've heard a lot of news going on with your PM. I hope it all turns out well.
We continue to have gun violence here. There are terrible things going on every day. When I was working, it was easy to stay away from the news. I was always busy. But this idleness is difficult for me, especially the days when I have to remain in bed. Some of those days, I feel okay as long as I am lying down. My tailbone is very sore so I have to be on my sides more often.
It's strange--all of these things I've never thought of before and actually took for granted. I did take my health for granted. I guess we tend to do that unless there's a crisis.
Stay well! Love, Sue
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Hello Gill,
I was glad to know that you have tested negative for Covid. These latest variants of Omicron are not good news. So many people seem to be catching it.
As for Boris Johnson, I have just watched PMQs and I just cannot believe his behaviour. Somehow he is going to have be dragged out of Office. I suppose he will be rushing off to Ukraine now and making sure he prolongs what never should have been a war and should have been over in a week. Russia has a right to protect its borders. It is better than having an open invasion of your borders like we have with more and more dinghies landing every day. Elizabeth I would not have let this happen. I see NATO as offensive, not defensive. All we do is start wars and ruin countries.
There is really not much to say about treatment for breast cancer of any kind as far as I am concerned. I think more and more drugs are being used for chemotherapy and post standard treatment. How much can a body take?
It isso difficult to feel optimistic about anything. My two younger brothers have both had hassle with GP surgeries. Health records not being recorded after visits, prescriptions not arriving at pharmacies and even a personal letter from one of them to a GP still sitting hidden in a heap of papers on a desk months after being handed to her. Raymond has had mess ups with his prescriptions as well.
I doubt that any of this mess can be sorted out.
Sending you love and best wishes.
Sylvia xxxx
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Hi Sue,
Hope you're chemotherapy side effects aren't too dire. My last chemotherapy made me the most ill I've ever been in my life. Hope neither of us need that poison ever again. The covid drug was amazing, I was worried about the combination of coronavirus and chemotherapy. Think you must be fairly tough, one of life's survivors!
Politics is at an all time low in England. This Prime Minister has worked very hard at alienating the leaders of just about every country in the Western world. We've lost most of our trading partners and the health service has all but collapsed, leaving cancer patients in many areas on ridiculously long waiting lists. Boris Johnson supposedly resigned yesterday, but wants to remain as caretaker Prime Minister, so not actually gone.
I developed a painful lesion at the base of my spine as I needed to lie down most of the time during the taxotere cycles. The hospital took this very seriously and it was treated, covered and checked on several times a day when in hospital and a district nurse checked again when I came home. I hope you've reported it to your doctor. Bed sores/pressure ulcers are serious and take a long time to fully heal.
I don't think any of us ever take our health for granted again after cancer. I listen to my body a lot more than I used to. Not actually a hypochondriac yet though...
Hope you're feeling much better very soon.
Love,
Gill xxx
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Hello Sylvia,
So many mess ups with GP prescriptions are being reported. Michael always collects our meds from the pharmacy at our local GP surgery and each time has said that the waiting room is empty. What's going on? Why is this being ignored by Government? We can't, after all, refer ourselves to hospital, we need to be invited via a GP referral. This is a disaster for the early diagnosis of life changing and life threatening diseases, heart conditions and so on. We're constantly being told that early diagnosis is critical to effective treatment!
So, Johnson has resigned - sort of. I want him out today, if he doesn't physically remove himself over the weekend a lot of us will conclude that his resignation was just another lie. Every Tory Minister who has resigned has once happily lied for him and supported him in destroying everything that was good about this country. Only a General Election will clear this lot out.
My daughter and Granddaughter both have covid. My daughter tells me that she's feeling very unwell, extremely tired with aching joints and a persistent headache. Are coronavirus variants becoming more dangerous again? They're certainly more infectious. Hardly anyone's wearing a mask here and social distancing is a thing of the past. There needs to be a statement from the Health Secretary before this gets out of hand again.
There's going to be a heatwave next week so I shall avoid going out for anything that isn't absolutely essential. I expect the beach in Exmouth will be crowded.
I'm trying to find something to look forward to - it's not easy at present as the country's in such a mess and it's difficult to see a way out. I shall go and lose myself in the garden, that usually helps.
Wishing you and Raymond a safe and peaceful weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your recent post. I am feeling very weary of everything and am literally left speechless with what is going on in this country.
I do not think we have really got rid of Boris Johnson. He should have been voted out on that vote of no confidence. His goons have lost an opportunity to get rid of the liar-in-chief. He will probably put himself forward for leader of the Tory Party and win or become part of the team under a new leader. All we need is him to become Foreign Secretary and he willmake sure we have WW3. It is not really Ukraine fighting this war, it is NATO.
Covid seem to go on and on and no one seems to be doing anything about it.
That is all for now, keep safe and keep well.
Love.
Sylvia xxxx
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Hello Sylvia,
These are the darkest days I can recall living through in the UK. Not one Tory leadership candidate has mentioned the NHS. It's all about destroying free speech, ending employment laws, cancelling welfare rights, poisoning our relationship with Europe, wrecking vital services....... everything that made this a decent country to live in. I truly despair.
My colitis has returned, I'm now in the second week. You'll probably remember that this is a legacy of c - difficile. I wasn't going anywhere in this heat anyway, but do have an appointment with the hospital prosthetic department tomorrow afternoon and I'm hoping to be well enough to attend.
Cases of covid are rising very quickly, so where is the Health Secretary's guidance? England is completely rudderless. Doctors are calling for measures like masks and social distancing to be brought back. Ambulances at the Norfolk and Norwich University Hospital are queueing up outside as there's nowhere else for them to go. So many medical staff have covid.
I'm trying to think of something positive to write, so I'll end by saying how well Sue is doing. The last infusion is never easy as most patients have weathered a fairy devastating storm by then. She's very fortunate to have been given an effective covid drug. I'm looking forward to hearing about her final plans for surgery.
Please take care, you sound very down. Give yourself some much needed time and space.
Much love,
Gill xxx✨🌻
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Hi Everyone,
Thank you Gill and Sylvia for all of your supportive words. I think about you often and I'm very thankful to have you.
I am slowly coming out of this last chemo. The issues from covid have been very mild. My nose is slightly congested, especially in the morning. My cough is also very mild. I don't know why they don't give this drug to more people. Perhaps because of the extreme cost of drugs. I watch my insurance bills come in each month and I can't believe the amount of money for an infusion of 1 chemo drug. On one hand, I want to laugh at the absurdity of it. But on the other hand, it infuriates me. I'm grateful for my medical insurance.
I'm waiting for my surgeon's office to call to schedule an appointment. They also want an ultrasound. It shouldn't be long before surgery is scheduled. These doctors seem to do things in their own time and then want it immediately. I told the nurse how difficult it is to get an ultrasound scheduled. They should know that, but we'll have to wait and see. I am calling them today to check on progress for getting things in motion.
Your Boris Johnson sounds a bit like our Donald Trump. Very scary people who just want power and control. Even though we are lucky to be rid of Trump, he still lingers and his supporters wreak havoc on our country. I've never been a particularly political person. But with so many awful things going on, it's hard to sit back.
I'll keep you informed over the next few weeks of surgery and radiation progress.
Love, Sue
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Hello Gill,
Thank you for your interesting post. I do agree with everything you said about this country. It is not a country that you can be proud of. I think the people putting themselves forward for the leadership are just as bad as Boris Johnson. They are just messing around and I seriously think we could end up with Boris Johnson back or put into the cabinet by the new leader. We need an election to sort things out. Keir Starmer probably needs to go as well. I think we need to get rid of first past the post.
I was sorry to read that your colitis has returned. I do hope that it does not stay around too long.
As for Covid, no one seems to be taking any notice. So many people are getting it, but nothing is being done. It looks as though these two variants of Omicron, 4 & 5, are highly contagious. I have heard from friends and family who have got it and some are very unwell with it and others have it quite mildly. The fourth vaccination does not appear to be helping at all. Those who have had all four vaccinations and had Covid before, are still getting it again. Raymond and I are not having the fourth vaccination, but are keeping ourselves very much isolated and putting on masks on the rare occasions we go to shops. Raymond has already received a letter about getting the flu vaccination done, but is not hurrying to get it. Everything is being pushed too quickly.
It is good that Sue has received her last infusion and is doing well.
How do you feel about the forum now? I feel that it is still quite slow and just does not seem like the forum I joined. It seems to have lost its personality. It does not seem that active.
As for our own thread, and Calling all TNs, both dating back to 2010, they do not seem very active now. Do you think that they have served their purpose?
That is about all for now. We now need to get through the heatwave.
Take care of yourself.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
Thank you for your post. We are only too glad to try to help you through this.
I was glad to know that you are slowly recovering from the last chemotherapy and glad to know that your issues from Covid have been very mild.
I think everything about our healthcare is connected to making money, whether it is private insurance or state run. I have read in the past about our NHS being overcharged by the drug companies, especially for things tht can be bought over the counter, such as paracetamol. When I was going through chemotherapy I did ask some of the nurses how much my chemotherapy treatment was costing. They were surprised that I wanted to know but I was not surprised by the amount they told me. Profit is the name of the game.
I can understand that you want to know the date for your surgery, but please make sure you are ready for it. It would be good to have a date to prepare for it, rather than have it suddenly sprung on you. You need to go in a relaxed frame of mind. For me it was in many ways the worst part of the treatment, as I knew I would be in hospital for about five days and I dreaded being away from home. Here in England the time is much shorter now and patients can be sent home the next day with the drains in and a nurse coming in to check on them. When I had surgery you were not allowed home until the drains ran clear and were removed.
What a world we live in today with the Prime Ministers/Presidents we get! Our countries are divided up between the haves and the have nots and equality seems just a dream. Our country needs modernising and our politicians need to be moved out of the Palace of Westminster into a modern office style of work, such as they have in Scotland and Wales. We need to get rid of all the ceremonial nonsense. You are right about power and control. It is absolutely shocking.
It is disapointing that we have not heard from Mary, HelenLouise and Kath, so we just have to assume that they are busy and not suffering from Covid or anything else. We have not heard from Kelsey either about her mother, so I hope she is alright.
We are now having a heatwave which only adds to our problems.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hi ladies,
I saw that Rosie cat (I think) wrote “I've left reconstruction until I can be reasonably sure that my cancer has gone. I felt then and still feel that immediate reconstruction could obscure the return of a lump“
what do you mean by this?! I am a bit worried because my mum has only been offered the Lumpectomy, well they basically said they will scrape about the affected 0.6 cm lump and 1 lymph node, not a mastectomy? Which I would rather personally. They are working around her breast implants but taking them out. Now I'm worried there would be more of a chance of it coming back! They said they only do the mastectomy if she had the bracket gene
I cannot wait for her all clear but my anxiety about it returning lately is rampant! I cannot relax
is it normal that after the chemo finishes in 3 weeks she has to wait 6 weeks for surgery?! I'm so worried it will return during the 6 weeks!!!!! Maybe I am overthinking.And I'm worried her body will be so weak from the chemo the surgery won't heal well
because when she had a follow up ct they could not see the cancer as the chemo worked so well they literally said that during surgery they will just remove a few cells0 -
Hi berniek,
My tumour was metaplastic and measured 2.4 cms. Metaplastic cancer is notoriously difficult to treat as chemotherapy often doesn't have much impact, sometimes none at all. Surgery is usually done first, followed by chemotherapy about 4 weeks later. I had to fight for chemotherapy as my surgeon wasn't willing to offer it. Metaplastic cancers are known to come back quickly and often in the first three years and I consider myself fortunate to be almost four years out. Given the risk, I decided that reconstruction could wait. Even now I may decide not to go ahead. I'm not a medic, but was concerned that if there was a recurrence, an implant might hide it. A mammogram cannot see the tissue behind the implant. I think it's a tough choice, I was 63 when diagnosed, perhaps my younger self would have missed having a breast more than I actually did. Losing my hair was the greater trauma.
Remember that chemotherapy works extremely well on 'normal' triple negative breast cancer and a six week wait between chemotherapy and surgery sounds about right. Your mum's body has been through a lot. If she's feeling well enough and is worried about the wait, perhaps her surgeon would agree to an earlier operation date, but I think recovery from the impact of chemotherapy is more important at the moment.
Your mum had a relatively small tumour, I doubt if a mastectomy is necessary and a lumpectomy would be much less traumatic. Overthinking is normal, I did it - and still do during darker moments. I hope you have a breast cancer support nurse to talk about your concerns with.
Take care.
Love, Gill xxx
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Hi Sue,
I understand your frustration at the difficulty in scheduling appointments. It sounds much more efficient than our NHS though. Phoning a department here is often not an option as no one answers, or if they do answer there's invariably a wait for the person you want to speak with to return the call - sometimes they never do. My breast cancer support nurse and specialist oncology nurse were the people I relied on most. Actually, your system doesn't sound too bad, not sure I'd want to have all those bills to go through at the end if the month though. Payment isn't a patient's concern here as treatment is paid for by taxes. This isn't likely to continue for much longer if the Conservative Government has it's way.
Johnson is very like Trump. Less orange, but with the same contempt for the law. I've always been interested in politics and I can honestly say that I've never seen anything as frightening and corrupt as this Government. Like Trump, Johnson seems determined to hang on to power and has plenty of extreme right wing supporters who will fight his corner.
Good luck with planning your surgery. I hope you will have recovered from the physical trauma of chemotherapy first though. From all that I've read, radiotherapy is much easier, but very tiring, so don't try to do too much. As always, rest whenever you need to. Your body knows best.
Good luck.
Love,
Gill xxx
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Hello Sylvia,
Interesting to hear John Major discussing this dangerous 'Conservative' Government and answering questions in a Parliamentary Committee a couple of days ago. His disgust and fear for democracy perfectly mirrored my own - and yours. Worth listening to, it's on BBC iplayer, Parliament channel. Another first for Johnson yesterday when he blocked a no confidence vote called for by Starmer. Keeping Johnson as caretaker until September is extremely dangerous for the country as anyone with any sense would know. Blocking an opposition vote of this kind is unheard of. Boris Johnson has not resigned, watch this space.
Covid deaths in the UK have now passed 200,000 and still no word from the Health Secretary. I have an appointment at the hospital for a new prosthesis this afternoon (colitis permitting), it will be interesting to see if everyone's wearing a mask.
Helenlouise hasn't posted for a long time, I wonder how she's coping. She deserves some good news after everything she's had to deal with. I think most threads on the site are experiencing a drop in comments, especially since the change in format. We've often discussed the issue of whether the thread has outlived its usefulness.....and then someone new drops in who needs our support. I think the need remains and probably always will.
It isn't quite as hot here today and it rained for a short while yesterday, nowhere near enough though.
Keep safe and well both of you.
Much love,
Gill xxx
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Hi Sylvia,
I finally have an ultrasound scheduled for next Tuesday. Next they'll schedule me with the breast surgeon who will look at the ultrasound results and schedule surgery. My guess is that it will be the last week of July. By that time, I should be ready physically. I've only had one other surgery in my life, so emotionally, I'm not really sure I'll ever be ready. But I'll build my courage and just help myself know that it will soon be in the past. I think that's how I've gotten through most of this. Grin and bare it.
Getting through the last infusion took a long time, and maybe that was because of the covid. I still have a bit of cough now and then, especially at night and early morning. By the time I'm up and moving around, it works itself out.
A friend from work stopped by yesterday for a short time. She told me that she got covid after her brother's wedding in Greece. The doctor gave her Paxlovid and she was back to work the next week. I was unable to take that medication because it interacts with chemo. I had to get the infused monoclonal antibodies. Are any of these meds in the UK to help? I think that countries should share what they have that works. So many people are traveling all over the world. They think that they are immune to covid because of the vaccinations. I think my husband even thought that when he went to his reunion. I don't think that.
Stay well and healthy. Love, Sue
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hi everyone
Hope u are all doing well? It's still crazy busy here and we are struggle through the coldest winter in Aust for a while while it seems to be getting warmer in the UK. We have just had a lovely trip to the uk and Ireland for a month and it surprised me how relaxed everyone is about Covid. We had no trouble travelling and managed to see some lovely site but unfortunately it's back to work with a vengeance! Will talk more late but just a quick pic of the Liverpool leg of our trip and some pics of the Murrumbidgee River where we have been recently doing a Japanese encephalitis sero survey with the Public Health Uni
Love to u all! I think of u often
Much love
Kath
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