Calling all triple negative breast cancer patients in the UK
Comments
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Helen
Good luck with the cording response to your physio and massage with your husband's help, that is great that he helps you with it. I didn't know it was related to the lymph system, interesting. I guess I didn't know anything about it. I wonder what it is that pops, probably just whatever is blocking the lymph flow in that area? How has it been with the Xeloda so far?
Love, Mary
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Hello all
Just checking in to say I'm still here and trying to keep up with the thread.
My mother started chemo on Saturday and had a terrible allergic reaction to one of the anti-sickness drugs on Sunday evening! She was rushed to hospital with shaking, swelling mouth and loss of control over tongue. Luckily the doctors knew immediately what it was and gave her the the anti-allergy treatment and she was fine again 20 mins later. She woke up on Tuesday with similar, but slightly reduced, symptoms, which the doctors decided was an "aftershock" of the first allergic reaction and monitored her in the cancer day centre for the day. So an anxiety-provoking start, but the last few days have been easier and she has not yet been sick, which is the symptom she fears the most.
It has been a real rollercoaster of a fortnight for our family as, 10 days ago, when I was due to go on holiday to the Lake District the next day, a GP appointment for some strange spotting "down below" saw me fast-tracked up to the hospital gynae ward - a doctor examined me, looked shocked and said my cervix looked very abnormal, he thought there was a "mass" and he was pretty sure I had cervical cancer. I was admitted to have an MRI -and potentially further investigations after that- and spent three horrendous days in hospital convinced I had late-stage cancer and worrying so much about my poor, bewildered children. My poor mother couldn't come and visit me as she was due to start her chemo and was advised not to risk a hospital infection.
Suffice to say it was a really hard, hard time, but it ended as soon as it had begun; on the third day (and I'm sorry if this is too much information, but then again if it can help anyone to ask certain questions and avoid the same mis-diagnosis as me, it's worth it!) I had a strange feeling a bit like losing a clot of blood and two forgotten tampons dislodged themselves! I have never been so overjoyed to see a used tampon! I immediately called the doctor, and he came bursting in and said that explained all my symptoms-and he had never before in his whole career misdiagnosed a retained tampon as cervical cancer. He even said that he had just been looking at my MRI and what he now knew were the tampons presented as a sort of mass on the image, so, until he heard my news, he was still very suspicious it was cancer, and would have most likely referred me to have a little operation and biopsy.
A real "Woman's Own" cover story,if ever there was one, but it did give me even more sympathy with all of you and everyone who has ever had a cancer diagnosis. The shock was so powerful...
Anyway, I can now begin to laugh at the absurdity of all of this, but , obviously, at the time it was really scary. Particularly the timing of it all, with my mother's chemo so imminent and all the worry about that.
Ellen, I was interested to hear that your mother is now planning on having chemo- I do hope you both have time to ask lots of questions and feel reassured about your choice. More and more people seem to be have chemo into their 80s these days. Don't get put off by my mother's allergic reaction- it is unusual, and anyway was dealt with really easily and efficiently.
Helenlouise, I'm glad you've got a plan about the Xeloda. It does indeed seem like protocol these days for your type of situation - I hope it feels reassuring that there is another string to the doctor's bow even if the first chemo didn't work quite as they hoped. I hope it is a tolerable regime.
Mary- have a wonderful time in Alaska. So adventurous!
Thanks everyone for reading about this very disconcerting episode in my life!
Flora x
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Hi Flora,
Goodness, what a scare you had! Those three days in hospital must have felt like weeks as you waited for news.
And bad luck for your mum to have had that allergic reaction. As you say, it's not that common, and I'm glad she hasn't had any vomiting. Is she on a three-weekly cycle? I imagine they'll make some adjustments for the next one.
Best wishes,Susie
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Hello Mary,
Thank you for your latest post. Just take it easy during your holiday, enjoy the break and just do what you can. I do hope you will be able to keep in touch during your break and send some photographs. I do hope it is not too cold.
You are right about the surgery my brother had. I do know the term arthroscopy but I just could not remember it when I was writing. I was sorry to read that you have been told it was not a good fit for you.
We all have to remember that there are long term side effects to the really toxic treatment that we have to go through to survive breast cancer and indeed all cancers. As I read recently, and truly believe, prevention is the only cure. Surgery, chemotherapy and radiotherapy all have nasty side effects, but we have been kept alive.
We are still in great need of rain here in Exmouth. It has been raining all around us but it keeps missing Exmouth, except for a few showers. I am hoping September will be a wet, cool month.
Many thanks, Mary, for your dedication to the thread. We still have too many viewers but not enough posters.
I shall be thinking of you and looking forward to hearing from you.
Love.
Sylvia xxxx
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Hello Flora,
It was nice to hear from you and I was sorry to read about all that you and your mother have been going through. It must have been very frightening for your mother to end up in hospital. I do hope that all will go well with the rest of the chemotherapy treatment.
As for you, I can imagine just how frightened you must have been about that mass. It sounds as though you might have had toxic shock syndrome from the forgotten tampons. It is something that you can get from tampons.
All is well that ends well!
Take care.
Best wishes.
Sylvia xxxx
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Hello Ellen (Ellewebs),
I do hope all will go well with your mum's treatment.
Best wishes.
Sylvia xxxx
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Hello Susie,
I do hope all is continuing to go well with your radiotherapy treatment.
Best wishes.
Sylvia xxxx
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Hello Moth,
We have not heard from you in a while and I was wondering how your radiotherapy treatment is going. We are always interested to hear personal experiences from patients going through treatment.
Best wishes.
Sylvia xxxx
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Hello HelenLouise,
I just wanted to say that I hope all goes well with your radiotherapy treatment. The actual treatment with the machine working is very quick and has to be, otherwise you would burn.
A lot of care is taken in placing the patient accurately on the table, so that the machine targets exactly where the treatment is needed. It is the same for placing the arm in the correct position.
Wishing you all the best.
Sylvia xxxx
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Hello to all those we have not heard from in a while, Val, Monica, adagio, 53Nancy, Kath, CocoonCat, Hanieh, Marias and Gina. If you have decided to move on, please let us know as we shall understand.
I think all of you have finished treatment now, except for Gina, who has had the cancer come back.
Best wishes to all of you.
Sylvia xxxx
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Hi, Sylvia
I wanted to mention that on the home page of breastcancer.org there is a big link to an article on peripheral neuropathy that is very good. It is the most easy-to-understand, detailed, and sensible description of CIPN that I have seen. It explains all the different systems in the body that can be affected.
When I was tested, I was told I had sensory, motor and autonomic CIPN, without much further explanation. What else I have learned has been picked up in bits and pieces. I knew that my CIPN presented in a different way than yours did. Now I really understand what happened to me, and I know why my legs get so weak-feeling after a bit of exertion. It's as if all the strength goes out of my thighs to start with, and spreads to my legs and feet, and then later the pins and needles will start in. There is no medication to treat the motor symptoms, it is the other kinds that are treated by the Neurontin drug, or the Cymbalta, or the try-cyclic antidepressants.
So, for me the upshot is this, I have been dealt the triple-whammy type of CIPN, and I will have to live with it for however long it lasts, maybe forever. And make the best of it.
The article also explains the differing effects of the taxanes and the platins as related to CIPN.
Talk to you soon, love,
Mary
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Hi Sylvia,
I have not started radiotherapy and am still waiting for my appointments. I spkoe to the head chemo nurse this morning and she is chasing it up.
Susie
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Hello everyone,
This is the first time I am posting on this thread. I am originally from the US, but have been living in Vienna, Austria for the last 9 years. I am almost 2 years out (from diagnosis) of tnbc. I had standard treatment - neoadj ac + t, then surgery, then radiation. I know the chemo had a strong effect because at biopsy, 2 lymph nodes tested positive, but then at surgery they removed 17 nodes and zero tested positive. A major whew! Unfortunately though, while the tumor shrank considerably (from 2.5 to 1.2cm), it did not disappear.
Generally I feel positive and I am quite grateful for the things I have learned about myself and life since the diagnosis. But there are also days when I am really scared it will come back. So that's my story. Well, part of it.
I am writing specifically to ask if anyone out there in the UK or in Europe has tried copper depletion (tetrathiomolybdate)? I know it was a topic a couple of years back when Cornell University / Dr Linda Vahdat posted some very exciting results, albeit a small study.
I have seen folks on other threads who got a prescription off-label - in the US and Canada.
Has anyone on this side of the Atlantic tried it (or know about it)? It can be prescribed for Wilson's disease and especially for TNBC the trial showed that it decreased risk for metastasis by altering the tumor microenvironment.
I really wish there were more research into this!
Mary
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Hi Sylvia,
I hope all is well with you. I need to read many past posts to catch up!
I finished radiation therapy on August 17th then took a family vacation to Lake Tahoe, which is in the mountain area of California. It was nice to get above the smoke and haze from the wild fires.
Radiation treatment went well. I had 15 sessions, but no boosts. My breasts turned slightly pink, but little irritation. My biggest side effect is fatigue, which is continuing. The radiation oncologist said the fatigue could be lingering side effects from chemo, which I finished on June 19th. He also said it could take until February 2019 (the one year anniversary of starting chemo) for me to feel 100%.
Next week I have an appointment with a nurse practitioner to have what is called a “survivorship care plan”. She said we will be discussing the next steps of my care, including cancer surveillance, healthy lifestyle and management of treatment side effects. I am glad she called to schedule an appointment because I was feeling “what now?” that treatment is over and I don’t see my medical oncologist until October for a follow up appointment. It felt strange to be finished with treatment after going to the hospital so often for so long.
I also attended a class on lymphedema. It was very interesting and we were given many handouts on exercises, what to watch for and even a special measuring device and were shown how we can self measure areas on our arms to check for swelling.
I hope you get rain soon. We could use rain here in California, too, but it is not unusual for it to be dry here until November or December.
Enjoy your weekend,
Mon
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Hi Mary,
Thank you for the information about the article on CIPN. I will have to read it, as my neuropathy in my fingers and toes really bothers me. No pain,but the numbness and tingling is so irritating.
Also on the BCO home page is a great podcast on neuropathy. I have listened to it a couple of times now, and have a better understanding of neuropathy. I also have more hope that my CIPN will get better.
Hope all is well with you.
Monic
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Hello DLJ46,
Thank you for your PM and your kind words about the thread. I was glad to know that you have been reading it for about a year. I started this thread almost eight years ago so if you feel like reading it gradually from the beginning you will find lots of information and lots of interesting posts from many women, and a few men, from all parts of the world.
Thank you for the information about your treatment and the details of your breast cancer. I do hope you are feeling well and recovering from your treatment fifteen months on.
You should not worry if you had a slightly different protocol for your chemotherapy treatment, as you have come through it all.
I was wondering whether you had extra infusions of the taxane drug since you did not have doxorubicin (Adriamycin). It could be that you did not need the drug because the tumour was so small.
I can understand how frightened and tired you were at the time, and so did not question your doctors. When we are diagnosed with breast cancer we tend to go into shock and we need time to get ourselves together and take charge of our treatment. You can always ask your oncologist now why he decided not to give you Adriamycin. It sounds as though he may have thought it was overkill, but it is not good for doctors to dictate to their patients. With hindsight you could have waited probably for that second opinion. It is all water under the bridge now and just be happy that you are alright.
I am glad that you have found it a comfort to read how others are doing.
I do hope you had a good day today.
Very best wishes.
Sylvia xxxx
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Hello Mary (AlabamaAustria),
Thank you for your post. I was interested to know that you are from the US but have been living in Austria for the past nine years. Thank you for the details about your tumour status and treatment. You do not mention what kind of breast cancer you had. Was it invasive ductal carcinoma (IDC), which is the most common?
Please remember that a tumour can shrink during chemotherapy but it does not necessarily disappear completely. Mine did not but the surgery takes care of the rest. Did you have a mastectomy or a lumpectomy? At the end of treatment were you NED (no evidence of disease)?
It is quite normal to have ups and downs in moods after cancer diagnosis and treatment. We know there are no guarantees but we do have to get back to a normal existence. This takes time as the body and mind need to recover.
I do not know anything about copper depletion, but I did look it up and found some information but it was dated 2000. Are you thinking of taking some of this? I am thinking that it must be something you take orally. I would think that to take something like this off label would not be prudent. Perhaps someone will post with some information. I do know that copper is a trace element and very important to the body, so I am trying to understand how depleting copper would help with decreasing the risk of metastases by altering the tumour micro-environment. Can you explain this?
I have read about a medication for treating some kinds of cancer called CV247. This is made up of Sodium Salicylate, Copper Gluconate, Manganese Gluconate and Ascorbic Acid (Vitamin C). I think it can be obtained through alternative doctors.
My information is that Wilson's disease is a very rare genetic disorder affecting the eyes. What would be the connection with breast cancer with triple negative receptors and prevention of metastases?
When I finished my treatment I was determined to get back to normal and recover from the toxins in the cancer treatment, through good nutrition and keeping myself mentally and physically active. I was so glad not to me on any post-treatment medication and get my body back to good health. There is no magic bullet for cancer cure and all medication has side effects. There are no exceptions.
Sending you best wishes.
Sylvia xxxx
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Hello Susie,
I am sorry I forgot that you had not started radiotherapy. Please let us know when you do start.
Happy weekend.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post on August 31st. Thank you for the information on that mone page. I have printed it out but have not yet had time to read it. I shall comment more when I have read the article. I do know from a friend that those try-cyclic antidepressants are often prescribed for nerve pain. She was given them for nerve pain after shingles, but nothing works. I was told that the chemotherapy induced peripheral neuropathy that causes numbness cannot be cured. The numbness is permanent. I have had several tests by podiatrists through prodding the feet with my eyes closed and I feel absolutely nothing.
I shall definitely be interested in the taxanes as I suspect both docetaxel and paclitaxel cause CIPN. My oncologist told me definitely that the docetaxel had caused my CIPN. I am not surprised about platins. Reading through some posts they also seem really nasty.
I hope all is going well in Alaska. Here I am still waiting for rain.
Thinking of you.
Love.
Sylvia xxxx
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Hello Monica,
Thank you for your latest post. I was glad to know that you had finished radiation and had gone on a family vacation.
I was also glad to know that your radiation treatment went well. I am not surprised that you are feeling fatigued. Both chemotherapy and radiation cause fatigue and it takes quite a while for the body to recover from all of this. Just carry on as normally as you can and see how you feel next February. I would think you will gradually feel stronger and less tired.
I was glad to know that you have an appointment with a nurse practitioner for survivorship care plan. If it is still the same standard plan that I had here in the UK, you will have appointments every three months for about two years, alternating between the oncologist and the breast cancer consultant surgeon. It is a basic physical test here, checking the chest area and under the arms and around the neck. I was told the consultants are looking for everything to be smooth. There are also regular mammograms and if there are any suspicious problems there will be ultrasounds. After a couple of years I went to every six months, again alternating and then once a year just with the oncologist. There may be variations on this.
At the end of the actual cancer treatment I had a CT scan and a bone nuclide scan and all was clear. I also had an ECG and all was fine.
Please let us know what is planned for you as things can change.
We all feel strange at the end of treatment because suddenly the appointments have finished and we are alone. We then adapt to a more normal daily life with the check ups that come and that sometimes make us feel anxious as the check up day arrives. We have to remember not to be frightened and that they are there to keep a check on us and to make sure nothing abnormal is happening.
What kind of exercises were you given to do for lymphoedema?
Do you know how to obtain one of these self measuring devices? I watched my lymphoedema specialist measure my right arm at my last appointment and then she talked about percentages. What advice are you being given about compression sleeves? I have not worn any during the three months of heat here and my arm has remained the same.
Keep well.
Love.
Sylvia xxxx
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Hello Mary, travelling in Alaska,
I forgot to say that a few days ago I received the latest newsletter from Chris Woollams of Cancer Active. It had some interesting articles in it, but I have not gone into them in great detail. You did not mention him when you posted so I was wondering whether you received the email. I remember you had problems in the past.
You might be interested to know that a new icon magazine is coming out about now. I shall probably buy one.
Love.
Sylvia xxxx
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Hello DLJ46,
Thank you for your latest PM and I am glad that you found the words in my reply helpful.
I can understand about the doxorubicin (Adriamycin). I had epirubicin (Ellence) and my oncologist told me she was using it because it was less harmful on the heart than doxorubicin. I think they probably have the same effects since they both belong to the same groups of chemotherapy drugs. I am sure you were given the treatment best suited to your situation.
It seems to me that the less treatment you are able to have the better. I have a friend here who just had surgery, a mastectomy, so her treatment was over quickly and probably without all the trauma that months and months of treatment brings.
I was interested to know about the side effects of your treatment. I do hope that the lymphoedema in your breast will not cause you too many problems. I am assuming that you had a lumpectomy, and although lumpectomies are carried out to conserve breasts, unfortunately lymphoedema in the chest area can be more problematic than the lymphoedema in the arm after a mastectomy. Are you having to wear a compression garment for your lymphoedema? Have you seen a lymphoedema specialist and been taught exercises and manual massage etc.? I have posted on the thread about the fact that the taxane chemotherapy drugs can cause lymphoedema, and radiotherapy can also cause it. You might like to read the book Let's Talk Lymphoedema written by the number one lymphoedema consultant here in the UK. It has everything you need to know about lymphoedema.
I was very interested to know that you also suffer frozen shoulder and rotator cuff as a result of your treatment. I know someone among my friends who suffers from problems with her shoulder and she has been told it is all to do with the radiotherapy treatment she had years ago for breast cancer. I have another friend who had prophylactic breast surgery and last year was diagnosed with rotator cuff problems. All this is not much fun but we are all alive, surviving and coping.
The other long term side effects are peripheral neuropathy, mainly of the feet and hands. Again, the taxanes are implicated in this. If you click on the Main Site section of bc.org, you will find a podcast about neuropathy that is easy to understand and will tell you all you need to know.
Thank you for telling us where you are in the US and thank you for saying that you enjoy this international thread. It did not start out as such. I started it for the Brits because I thought we were in the Dark Ages over here back in 2005 when I was diagnosed. At that time my consultants told me that most patients did not ask any questions and just wanted the treatment. I think that has changed a lot now. Because of social media there is a lot of information.
How are your two children coping with this? Do you have some family support or good friends to support you? Do you go to any counselling etc. organised by cancer charities?
Try not to worry and try to relax. Eat healthily, exercise mentally and physically and be strong and positive, telling yourself you will get back to a normal life.
Fond thoughts.
Sylvia xxxx
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Thank heavens for you. My pathology results came back last Friday, but were not complete. They did show that I am oestrogen and HER negative and my surgeon then said I could be triple negative. Went home and did the research! snce then, my life has fallen to pieces, haven't been able to eat, feel sick and have completely withdrawn. I feel like a complete coward. Can't really face tomorrow when all the results will be in. Then I saw your amazing post and suddenly I feel that a light has just come on. Thank you.
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Hello, Rosiecat, and welcome
I joined in the spring when I was diagnosed and, like you, was glad to find a forum dedicated to us Triple Negatives.
Do you have anyone at home to give you support?
Susie
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Hello Susie,
Yes, my husband, but he's as nonplussed as I am at the moment. I've never thought of myself as someone who would either shrink from the truth or give up. Yet here I am in my room, duvet over head, not eating and trying my best not to think. Can't even face meeting my surgeon again for the rest of my results tomorrow. Wish I could just pull myself together.
Gill
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((((((Rosiecat))))) we are sending you many gentle hugs. This is a very difficult time. You are surrounded here by people who truly understand how you feel.
Give yourself time. You will get through this. Do you have someone else who can also go with you (and your husband) to the doctor appointments to help you through the visit(s)? Are other people available to help you two otherwise (e.g. with food, rides, etc)?
We're here for you!
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Hello Gill,
You probably feel like you've been tasered. All cancer diagnoses come as a shock as we all think it won't happen to us. I know I did. And our family and friends are shocked too. I hope that your husband will go with you to get the rest of your results. If nothing else, he can help remember what's said.
I'm nearing the end of my treatment now. I had surgery right away, then chemotherapy for four months, which was nowhere near as bad as I was expecting. Now there's just three weeks of radiotherapy left. As Sylvia says in many of her posts, the statistics are pretty meaningless for the individual and, while the survival rate for triple negative is lower than hormonal cancer, it's not that much lower. You're still far more likely to be cancer free in a few months than not.
The NHS treats more than 50,000 women a year for breast cancer and they're really good at it. More and more resources have been thrown into it in the past few years and I have felt throughout as if I was getting the best treatment possible.
Keep posting as I think you'll find it a help.
Susie
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Hello Gill (Rosiecat),
Thank you for your posts and I think it is good that you accidentally posted on the forum. Like that you will get other members of the group posting in to help and support you. I do hope you will get the rest of your pathology report soon so that you will know whether you are progesterone as well. Please do not be frightened about a diagnosis of breast cancer with triple negative receptors. The standard treatment for breast cancer is a combination of surgery, chemotherapy and radiotherapy.
When you have all your details, it would be useful if you could put them under your signature page so that we all have a point of reference, can follow your treatment and, like that, we will not confuse you with other patients who are posting.
I do feel very annoyed about all the doom and gloom published about triple negative. Close your ears to it all.
I can understand how upset you are but you will slowly recover. We all go into shock when we are diagnosed, so be gentle with yourself and give yourself time to recover.
I do hope all will go well tomorrow when you see the consultant for the results. Make sure you understand what you are being told and make sure any medical terms that you do not understand are explained to you in plain English. You need to know what kind of breast cancer you have. The most common is IDC (invasive ductal carcinoma). Make sure you know the size of the tumour, the stage and the grade.
I hope you will have someone with you to help you retain the information. It is always helpful to write notes, questions and answers.
I was so glad to know that my post helped you. Your motto should be to be positive about being (triple) negative.
Keep with us and we shall help you all we can.
I was so happy to see you are a fellow Brit and you can see that SusieW5, another fellow Brit, has already stepped in to help you.
You can do this. Take it easy.
Fond thoughts.
Sylvia xxxx
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Hello Susie,
Thank you so much for coming in to support Gill. This is exactly what this thread is all about. Those that have finished treatment are so needed to help others embarking on their journey and newcomers can join up with those here going through treatment.
Those going through treatment at the moment are Moth from Canada, HelenLouise (Helen) from Australia, SusieW5 waiting to start radiotherapy from the UK, Flora UK, posting for her mum, and Ellewebs (Ellen) also posting for her mum.
We have others from different countries who have finished their treatment and hopefully will come in to tell you there is life after breast cancer.
We all have something to say and everything we say will be useful.
I hope all is well with you.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
I'm probably being dim but how do I post the details of my cancer below my posts?
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