Calling all triple negative breast cancer patients in the UK
Comments
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Hello christina1961
From all of us congratulations on finishing radiotherapy today. You and Bernie have now completed official orthodox treatment. Let us know how you feel this week.Thank you for your words of encouragement to all of those facing radiotherapy. It can be done without too much trouble, and you and Bernie are proof of that.
We shall all be thinking of you on Friday as you start eribulin (Halaven). Am I to understand that this will be an intravenous procedure? This will be a long journey for you, but you will get through it. Please post as often as you like for support.
Have you any idea why you will not be able to take antihistamines during your treatment? Is there some kind of interaction? I can sympathise with your allergy problems as my husband suffers from them very badly all year round. What are you allergic to? My husband says that he is allergic to life!!!
Best wishes
Sylvia0 -
Hello Maria_Malta and mccrimmon324 (Heather)
I hope you are both relaxing and enjoying your days as you wait for radiotherapy. This should all be over before Christmas.Best wishes
Sylvia0 -
Hello bak94 and Suze35
Suze35, I hope your clinical trial is going well.bak94, I hope all is well with your Avastin treatment. It must seem a long wait for your surgery on November 30th. We all remember that, for you, this is the second time around. We are supporting you here.
Best wishes
Sylvia0 -
Hello Sam52
I hope you are relaxing today, as I think it is half-term. I do hope you will have a pleasant week.Here in Exmouth the rain has finally come with a vengeance after months and months of practically no rain. It has been raining all through the night with a near gale force wind blowing. The sea front was suffering yesterday with waves coming over the sea wall in certain places. I would not be surprised that there is some flooding there.
I was thinking of you because I was talking yesterday to someone who has just about finished five years since diagnosis with oestrogen+ breast cancer. We were comparing notes. She was also told that her breast cancer was aggressive and grade 3. This proves that aggressive does not apply just to triple negatives and HER2+. She had about six nodes affected. She has been on some Tamoxifen but not much. She has been mainly on exemestane (Aromasin), one of the aromatase inhibitors. She has been told that she can stay on it for another eighteen months. Apparently, Tamoxifen is used more, because it is cheaper. She told me that Aromasin is quite expensive.
I was also talking to another woman I know who was diagnosed with hormonal breast cancer ten years ago. She did not complete her chemotherapy because she was unwell with it, but had surgery and radiotherapy. She took Tamoxifen for six years, but, for the past four she has had nothing and has been discharged from the hospital, so she obviously has the same anxiety about the cancer coming back, as we TNBCs.
I hope to hear from you when you have the time.
Best wishes
Sylvia.0 -
Hello everyone
I just wanted to say that I know we can all feel somewhat powerless when we are diagnosed with breast cancer. However, there are simple things that we can do to help ourselves. Common sense tells us that when we are going through serious treatment. such as that involved with breast cancer, we have to do everything we can to help our body and immune system fight treatment that is debilitating. Many tips have been given on what we can take and what we can do at each stage of treatment.Eating properly and healthily is one of the easiest things for us to control. Because I believe that you are what you eat, I was very interested in the article on the CANCERactive website about twelve foods that apparently can help to fight cancer. A list is then given. Each with a short paragraph of information. The list is as follows:-
Oily fish, Carrots, Red peppers, Sunflower and pumpkin seeds, Brazil nuts, Mushrooms, Tomatoes, Egg yolk, Broccoli, Garlic, Beetroot, Pulses.
Each paragraph gives information on the vitamins and minerals etc. in these foods and other foods that are similar in their content.
As far as drink is concerned, the emphasis is on green tea. It recommends three cups per day to neutralise free radicals. It also says the Mayo Clinic claims, from research, that three to five cups a day can stop the growth of certain cancers.
It is also stated how important a multi-strain pro-biotic is to help release all the nourishment in the foods mentioned.
I am sure you would all find this article interesting. Look under cancer active, 12 foods to fight cancer.
http://www.canceractive.com/cancer-active-page-link.aspx?n=531
Best wishes
Sylvia0 -
Hi sylvia, thanks for all that. I find yyour research extremely infomative.
I still have another 11 sessions of radiotherapy to go. Burning very badly now so very concerned at the moment.
Hi to everyone
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Bernie, So sorry to hear your burning! My biggest fear of this process. What type of cream are you using? My oncologist, Radiologist and the onco nurse all suggested I use aloe directly from the aloe plant several times a day to help. Maybe you can try?? Hope your last 11 go smoothly and painlessly.
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Hello BernieEllen
I am sorry about the mistake. You are nearly at the end, so I was sorry to know that you are now burning. Please ask your radiologist for advice, as I do not think patients are supposed to burn. I used Aqueous cream throughout my radiotherapy. After it was all finished, I got a bit of redening, went and showed it to the radiologist and then put some aloe vera gel on it.
This past year I did have an aloe vera plant for a while and my husband tried it on an infected finger. It did help a little. Do you think you will try the actual plant gel? I think it must be alright if mccrimmon324 has been advised to use it.
I am glad that you find the information I post informative.
Best wishes
Sylvia
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My neighbor has a ton of aloe plants in her yard, she was kind enough to dig a couple up and give them too me. Now I have them in a pot waiting to be used. Sylvia, I had asked the dr about burning and he actually said that sometimes they want to burn you. It all depends on the location of the tumor and what not, He did say that I probably will get red and uncomfortable but there are cases where they do burn intentionally. I had no idea! I still firmly believe I'm going to burn badly with my pale skin, we shall see.
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Hello Sylvia, Bernie, mcrimmon, etc, so sorry to read you are burning, and rather concerned to read what mccrimmon said about dr saying sometimes they 'want' to burn you...have never heard this before.
Regarding creams and ointments, I read somewhere on the boards that calendula cream, is very soothing and helps skin heal very well, but whether you can use it during treatment, or only after, is something I don't know.
Since my recovery from chemo induced latrine mouth syndrome which put me off most food, I've been trying as much as possible to follow an 'anti-cancer' diet eating the kinds of foods recommended in the Canceractive site you mentioned Sylvia. But need to read up on the foods and supplements which are particularly recommended for radiotherapy...am taking iron, folic acid and vitamin c since hospital, which I think docs said I should continue for 3 months... but I need to look up what else is recommended... are you taking anything BernieEllen?
The weather is changing here, getting cooler and we've been having some showers, but the sun still comes at one stage or other during the day. I'm feeling better all the time, but in the last few days progress has slowed down and am getting a bit impatient..I'd just like to carry on with my life...it's been almost 8 months since my diagnosis and I still haven't finished treatment....
Love and healing thoughts to all of you...thinking of you Bernie, take care of yourself!
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Hello mccrimmon324
Thank you for your post. I was glad to know that you have some aloe vera plants ready for use. I must admit that I am surprised to learn that your doctor told you that sometimes oncologists want to burn you. I cannot understand that, but I am not a doctor. I think I would have been alarmed when going through treatment if I had had signs of burning!If I were you I would go through the 20 Things you need to know about radiotherapy on the CANCERactive site and perhaps tick off some of the questions you might want to ask. What I can remember from my own treatment is that after the chemotherapy and then the surgery for a mastectomy, I had an appointment with my oncologist and my breast cancer surgeon. They were both smiling and told me I had a good pathology report and that there was no visible sign of cancer in my body. The radiotherapy was done to mop up any possible stray cells. I had three weeks of radiotherapy with boosters and had no problems at all with my skin, even though I am pale-skinned and can burn very easily in the sun. Some weeks after treatment my skin was a little red, as I have said before, and on the advice of a radiologist I used some aloe vera gel and it went away. I remember my oncologist telling me that sometimes patients developed a cough due to the radiation affecting the lungs. This did not happen to me.
Try not to worry about this. There are so many women going through radiotherapy for cancer and they get through it.
If you look at number 8 of the 20 things, it states that selenium, soya isoflavones and astragalus have all been shown in serious research studies to make radiotherapy more effective.
There is so much information on these 20 things that you need to keep reading them. There is all sorts of information about supplements and food during radiotherapy.
On the CANCERactive site under Radiotherapy burns, the two recommended products are Calendula and Aloe Vera gel.
http://www.canceractive.com/cancer-active-page-link.aspx?n=2947&Title=Radiotherapy burns
It does say that radiotherapy can cause superficial redness or even burning and the doctor or radiologist may prescribe several different kinds of creams. My hospital seemed to be keen on aqueous cream.
Calendula and aloe vera gel are natural products. If you look at the site you will see that it says women using calendula had fewer skin problems than those using steroidal creams. Aloe vera can be bought as a 99% natural gel product.
There are other creams that you can get on the CANCERactive site that are toxin free.
Keep looking ahead as you will be able to start the New Year with your cancer treatment behind you.
Best wishes
Sylvia0 -
Hello Maria_Malta
I was so glad to know that you are following a healthy diet, as I think this is the most important thing that we can do for ourselves. Fresh fruit and vegetables are so important and so is a variety of them with different colours.As I said for mccrimmon324, keep looking at the 20 things you need to know about radiotherapy. I think you will find that the same foods keep popping up as essential for good health and a strong immune system and the bad ones are always the same. I think we all know that the standard western diet is bad for us and leads to all kinds of degenerative diseases.
I have just been reading a Cancer Diet for Chemotherapy from Chris Woollams of CANCERactive. It makes very interesting reading and it made me realise that I was right not to follow the kind of diet that I was recommended. I kept to my own healthy diet and did not gain or lose weight during treatment. I always tend to do what I think is right for me and I am not easily influenced.
I think if you follow the healthy diets that we have discussed so much on this thread that you cannot go far wrong.
Maria, keep looking forward. Like mccrimmon342 it will soon be over for you and you can begin the New Year with optimism.
The breast cancer journey is a long and slow one, but you get there in the end.
Best wishes
Sylvia0 -
Slyvia,
Thank you, I'll have to go on that site and make a list. As for as what I said about the dr's wanting to burn you. I think I used poor language. What he meant was depending upon the turmors location, you may be more likely to have the cancer spread to the skin so they concentrate on that area as well, unfortunatley causing the burn. I guess I could have said it that way to begin with. Sorry for the confusion
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Just thinking of everyone on this thread! Hi Sylvia! I have been a bit down lately and I really should be happy! I have my last abraxane tomorrow. I have been feeling the se's though, numb hands and feet, extremely tired, runny nose and eyes. I don't remember being this tired 8 years ago when I went through treatment, but I only did 4 rounds of each every 3 weeks, so I had much more time to recover. I was also younger! I thought the weekly abraxane was suppose to be easier, but my doc upped my dosage, each time the nurses had to double check because they thought it was a mistake!
I want to start working towards living healthy, I have already made some changes, but exercise has not been one of them lately! I love my new blender and make fruit and vegetable smoothies. I need to track my fat intake, I definitly want to eat a lowfat diet. I need to take this seriously, as if it is a continuation of my treatment.
BernieEllen, sorry you are burning, that has got to be so frustrating. I am a bit worried about rads. Last time I had them I had lumpectomy, chemo then rads, so plenty of time to heal inbetween. This time I will be having rads soon after surgery, or as soon as I heal enough from surgery.
McCrimmon, my first time around I did not burn badly at all and I am very pale also. Rads did make me extremely tired though, and a bit nauseous. My nipple turned black after I was done with rads but did not hurt-freaked me out though! Went back to normal after a few weeks.
I hope everyone has a nice weekend planned. I am supposed to work on Saturday, but not sure if I will make it. I don't think I am suppose to work at all with ssdi, and it is very hard for me to work, but I realized it helps me keep my sanity, even with some of the negative stuff that goes on. My clients are wonderful and I miss them!
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Dear friends,
Just wanted to check in quickly to let you know that my path report showed that I had a complete pathological response to chemo, and there is no evidence of cancer in breasts or nodes...all nodes tested were negative, although one node showed evidence of scarring which implies that there might have been cancer there...however overall I think it is the best possible result, and very encouraging to know that chemo WORKS, and thus the SEs were worth it.
bak, good luck for your last dose, you will feel a lot better once you know you aren't going to have any more...it's not surprising that we have days when things look very bleak, we're really on a rollercoaster of emotions, apart from the unpleasantness of side effects and the general tiredness which treatment induces. I felt I couldn't eat healthily while I was on chemo as there were so few things I could face eating by the end... but now am trying as much as possible to avoid the foods which are definitely not good for us. (a few pages ago I posted some info on the op I had which you'd asked about, if you're still interested..I'm really pleased with the result)
BernieEllen, the days are passing, and you are getting to the end. Mccrimmon, when do you start rads? I'll only know once I see my onc in a week or so.
Sylvia, thanks for all info as usual.. did you have much rain over the last few days? It is my favourite weather here...intervals of sunshine and blue skies,still quite warm but not hot..perfect weather for walking and this week I started to walk again and hope to take in a walk every day..yesterday 30 minutes and will gradually increase until I reach one hour, but for the moment have to walk slowly as my boobs are still rather sore.
Regards and strong positive vibes to all
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Hello mccrimmon324
Thank you for your post. I can understand your explanation, but I do hope that all will go well with your radiotherapy when you start on Monday October 31st. Do we know how many sessions you will have?You know you will get plenty of support from the people on this thread and that BernieEllen and christina1961 will be of particular use to you as they have recently experienced this part of the treatment.
Best wishes
Sylvia0 -
Hello bak94
Thank you for your post. I was sorry to know that you have been feeling down lately and I do understand this. During this breast cancer journey our emotions are all over the place and we never know how we are going to feel. Please remember we are here for you and that you can post to us about anything that is on your mind.It is a good idea to focus on the positive things in your life as much as you can. Today should be a happy one for you as you finish your Abraxane treatment. Does this mean that you will be able to have a rest from drugs as from today and up to your surgery on November 30th, which is now only five weeks away? Have you finished with Avastin? What is happening about your Zometa treatment?
I am sure that your low spirits stem from the side effects of the chemotherapy. I suppose the numb hands and feet are due to what is called peripheral neuropathy. It is a very common side effect of chemotherapy. My feet felt odd after chemotherapy and a podiatrist diagnosed it as peripheral neuropathy. My GP told me the same and said there was nothing to be done about it. Are you being given anything for it?
I can understand your feeling extremely tired as you are going through treatment again after eight years and are older. Your immune system will probably be finding it harder to cope, especially as it will have been affected by the first lot of treatment. I think you are coping extremely well, and I am sure that goes for the rest of the people on this thread. It must be more wearing on the body to have to deal with weekly chemotherapy, because, as you say, you do not have time to recover.
I would think the runny nose and eyes are allergic reactions to the drug.
It is good to know that you are going to start towards living healthily. It is one of the major things that we can do to help ourselves. When you have finished chemotherapy you can start to build yourself up and get as strong as you can before surgery. You can start on an exercise programme when you are through treatment. It does not have to be strenuous exercise. A walk is sufficient. If I were you, I would not go on too much of a low fat diet. Your body does need some fat, just not saturated fat. You can get healthy fat from nuts and seeds, which are part of my regular diet. I often grind them up in a coffee grinder that I keep especially for this purpose and mix them in with Sojade soy yoghurt that also has probiotics in it, as these help with keeping the gut clean and helping nutrients from food to be absorbed. As you know, I do not eat meat or dairy products, but I do eat fish, especially oily fish, for Omega 3.
You are so right to think of diet and exercise as part of the continuation of your treatment. Unfortunately, the struggle with breast cancer does not end with the end of orthodox treatment. We have to continue with diet and exercise, and elimination of stress and other negatives in our lives.
I hope you are having a better day today. Think of everything that has made your day worthwhile today and throw the negatives into the back of the cupboard and leave them there.
Best wishes
Sylvia0 -
Hello Maria_Malta
Thank you for your post.I was so glad to know that you had an excellent pathology report which showed a complete response to chemotherapy and there is no evidence of cancer in breast or nodes. You must be really pleased.
It is encouraging for everybody that chemotherapy does work for the majority of us. It is true that the side effects which can be exhausting are worth it in the long run. Chemotherapy is a very long journey but we can all get through it.
I hope that everyone looking at this thread will take heart from these encouraging words from Maria. Do not be afraid of chemotherapy, or surgery or radiotherapy. You can get through it all.
We are having lots of rain here in Exmouth. It has been raining virtually non-stop for five days. We are having all the rain that we did not get during the spring and summer. We do not have any sunshine or blue skies at the moment.
I was glad to know that you have started walking again. There is nothing like a gentle walk to revive one's spirits and make one feel good.
Keep up the very good work you are doing.
Best wishes
Sylvia0 -
Hello Ladies,
Fantastic news Maria, so glad to hear you had a "complete response" I can only imagine the relief you felt at hearing those words.
Bak94, thanks for letting me know your pale too, Ok, Ewwwww, I don't want my nipple turning black, I can only picture a piece of charred flesh but I guess if it doesn't hurt I can live with a couple weeks of it. I've lived with baldness now for quite some time.
I'm just past 4 weeks PFC - about a week and a half ago if you looked really hard you could see some white fuzz on the sides of my head, I've been obsessing over watching my hair grow then yesterday I realized you don't have to try so hard to see the fuzz, so I guess it's going to grow.
I go tomorrow for my simulation, whatever that means. Then I start Rads on Monday. It's funny, I'm not scared of Rads at all, I just keep thinking its going to be time consuming and thats it. I just don't want to get really burnt but I'm very glad I'm not freaking out and having the panic attacks and depression like I was prior to Chemo.
Hope everyone has a great day.
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Hello everyone
I thought you would all be interested in knowing about an interesting I found in one of our newspapers this week.It is the story of a woman who has been treated for breast cancer with a new technique that increases the effectiveness of chemotherapy and cuts the risks of side effects. It is about how electric shocks can turbocharge chemotherapy.
Briefly, this is the story of a woman who was diagnosed earlier this year with breast cancer for the fifth time in twenty-eight years. She was first diagnosed at age thirty-five and is now sixty-three. She was first diagnosed with a lump in her right breast. She had found chemotherapy gruelling and was dreading the thought of more chemotherapy.
There was no family history of breast cancer but her mother, and her mother's five sisters, had all died from ovarian cancer in their late forties and fifties.
Interestingly, genetic experts analysed tissues from the six women mentioned above and discovered they all carried the faulty BRCA1 gene. We all know this carries an increased chance of developing breast or ovarian cancer. Because of this the woman in the article had her ovaries removed, but she later developed breast cancer.
She had a partial mastectomy and radiotherapy but the cancer came back nine years later in her left breast and then six years after that.
When she was diagnosed the third time she had a bilateral mastectomy and six months of chemotherapy every three weeks. She found that chemotherapy exhausting and suffered the common side effects about which we all know, of tiredness, nausea and horrible taste in the mouth which put you off your food.
It was three years later in 2001 that the cancer came back. It came back again in 2002 for the fifth time and this time it was in the skin where her right breast had been. Apparently, she had noticed a rash, a bit like pimples. She was told that when breast cancer spreads it often appears as "nodules". They are tumours that originate in the breast but spread to the skin. Once again she had six months of chemotherapy, which she found awful.
These nodules came back in 2010 and than earlier on in 2011.
Her two daughters heard about a new technique being used at The Royal Free Hospital in London and the woman got a referral for a new treatment called electrochemotherapy. This procedure involved injecting a chemotherapy drug called bleomycin as usual, but then placing electrodes onto the cancerous nodules on the skin. By doing this they would fire electrical impulses to open up the cancerous cells, allowing much more of the drug to get inside and destroy them. This procedure meant less harm to healthy cells and fewer side effects.
The procedure was done under general anaesthetic and took thirty minutes. The woman was in hospital for a few days, but the result of the procedure was the cancerous cells were destroyed and she is now in remission.
Of her two daughters, one has the BRCA1 gene and one has not. The one who has, has had prophylactic surgery.
There are other details in the article which was in the Daily Mail on Tuesday October 25th under Good Health.
Apparently, only a handful of hospitals are using this new therapy and the Royal Free has recently become a reference centre for electrochemotherapy treatment on patients with recurrent breast cancer.
In the UK this treatment is available on the NHS and costs around £5,000 per treatment. The woman in the article needed only one treatment.
Have any of you heard of this treatment? To our American ladies, is this being used in the US?
Of course, in all of this, what attracted my interest was whether this original breast cancer was triple negative. In 1983 of course there would have been no mention of this and I think that Tamoxifen has been in use here for only about twenty years. I doubt whether any information was given about receptor status etc., not to mention HER2. Given the age at first diagnosis, and the later BRCA1 confirmation in the family it might well have been triple negative breast cancer.
The link to the article is:
I look forward to your comments.
Sylvia.0 -
Sylvia,
Not sure if you've seen this already but one of the ladies on the Calling all TNS thread posted this and I thought you would find it interesting.
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Hello mccrimmon324
Thank you for your post and for the link about the herpes virus. I read it with great interest. Let us hope that it will be a step forward. The trouble is that it is so slow moving and in the meantime young women especially are going through the turmoil and fear of triple negative breast cancer. We so desperately need a breakthrough, away from the standard orthodox treatment that has such terrible effects on the body, not to mention the mind.I do regularly look at Calling all TNS, but I find it too big for me and it is difficult to keep up with the individual situations of so many women.
Here in the UK mammograms have been back in the news. If I understood correctly, I think the criticism has been that their use in saving lives has been over stated and statistics show that in places where mammograms are not used the death statistics are the same as in places where they are used. The other criticism seemed to be that mammograms were diagnosing evidence of cancer so early that the mass detected would probably not have caused a person problems during their lifetime and yet, because of what a mammogram revealed, they undergo the drastic treatment of chemotherapy, surgery and radiotherapy.
It is hard to know what to think. I am not keen on having mammograms too frequently, because of the exposure to radiation and I do not think that it can do breasts much good being squeezed between plates in the way that they are.
Thinking about what bak94 said about feeling low, I thought you all might like to look at CANCERactive "How mental state can heal your cancer". You might like to have a look at this.
http://www.canceractive.com/cancer-active-page-link.aspx?n=2997
How are you, mccrimmon324, in this regard? Are your emotions all over the place? What about the rest of you?
Best wishes
Sylvia0 -
Hi to you all, thanks for the good wishes. I am doing ok, have been given burn gels to deal with the soreness, working really well, very comfortable. Will have a three day break this weekend, bank holiday monday.
Maria - Malta, brilliant news, really pleased for you.
mccrimmon, i'll be with you when you start the rads.
bak94, perfectly understandable to feel down and have bad days. I've said before we need to give ourselves treats every now and then. This is not an easy journey we are on but we can and do support each other.
Lots of Love
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Sylvia,
When I was diagnosed it caught me completely caught me off guard, I never felt any bump and was just going for my very first mammogram. My emotions were all over the place, I do suffer from depression and anxiety, not severly but enough to know that I needed to be on an anti-depressant. I felt as if I was on a roller coaster, after my surgery I had developed seroma, my wound opened and became infected and I had to wait for it to heal before starting chemo. I became very depressed and at one point my husband looked me in the eye and said to me ' No one told you that you were going to die" I think after that I started to get some emotional control back, then Chemo started and it seemed to pull me out of my funk altogether. Now the only time I really panic or have anxiety is before/during a dr's visit and I try to take a xanax beforehand.
As far as the rest of me, I'm overweight, I gained about 7 pounds during chemo, I had originally lost 25 before starting and I've been pretty good at watching what I eat. I've cut out a lot of things and have really upped the amount of fruits and vegetables I eat. Definitely watching the processed sugars too. I've also started doing the eliptical again for exercise, my goal is to get to 1 hour a day on it and get down to a healthy weight.
Sorry to ramble on again.
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mccrimmon, you are not rambling sweetheart - it is the nature of the beast
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Hello mccrimmon324
Thank you for your excellent post. It is good to give a detailed account of how you are feeling. I can fully understand your emotional turmoil on diagnosis and how upset you must have been with some of the complications during treatment. It was so sensible of your husband to remind you that a diagnosis of breast cancer is not a death sentence. I thought it exactly the same as you, but breast cancer is becoming a chronic disease for the majority of women.Like you, I get very anxious when I am due for check ups and after more than six years it is still the same. The sense of relief when the news is good is indescribable, but will be understood by all of us on this thread.
We shall all be thinking of you on Monday when you begin radiotherapy.
Hello everyone
With reference to the article in the Daily Mail about electrochemotherapy treatment, I forgot to mention the very important fact that it was mentioned that it could become possible to use this procedure to treat solid tumours, such as breast cancer.
We desperately need treatments that target cancer cells and destroy them without affecting healthy cells.
It is Friday once again and I hope you are all winding down, ready to switch off breast cancer, its trials and tribulations, and enjoy the weekend.
To Bernie, have a good bank holiday on Monday and rest up from your radiotherapy.
Best wishes
Sylvia0 -
i just typed a response and lost it! Not up to trying again right now! I did finish my last abraxane, going for Zometa next week and no more Avastin until recovered from from surgery rads. I read both articles with interest! That is my shortened version and I will repost later. Hope everyone is doing well! Oh, doc ordered a bunch of scans again-bone, pet/ct , muga scan. I think he wants me to have every scan under the sun!
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Hello bak94
I was sorry to know that you had lost your post. It is frustrating on this forum that you cannot save as you write. I cannot understand why and it does not make any sense. When I send ordinary e-mails I can save as much as I like. Most of the time when I post I do it in Word and then copy and paste into the forum.I was glad to know that you are not taking Abraxane or Avastin at the moment. It will probably do your body a lot of good to have a rest. You have a month before you have your surgery. You will have to recover from that before having radiotherapy, so you will probably not be finished before the end of the year.
Are you having any side effects from the Zometa? At least, if you do have any, you will be able to identify them more easily without the Avastin and Abraxane.
Your doctor seems to be taking very good care of you. It looks as though he is being very diligent.
Have a good weekend. Best wishes.
Sylvia.0 -
Hello everyone
We have discussed at great length the physical aspects of a diagnosis of cancer and its treatment, but have not discussed at such length the emotional response to such a diagnosis. We all have our anxieties, fears and worries, and you should not keep them to yourselves. Doctors and nurses who treat women for breast cancer and other breast problems, know the psychological aspects of these problems. It is important to talk over any emotional problems with your doctors and nurses. If you are asked any questions about your emotional state, I would think it very worthwhile to talk freely. The worst thing you can do is to bottle up your emotions.It is important to remember that your families and friends will also be dealing with emotional problems over your diagnosis. It is important that all of you get help.
Local support groups, breast care nurses, hospice-care nurses and forums like these can all help you.
We are nearing the end of breast cancer awareness month. I have not seen much activity here. Have any of you done anything special this month for cancer awareness?
I would just like to send my special wishes to those of you posting on this thread. I am very impressed with the way you are coping.
To any of you that have been newly diagnosed, be confident and if it can help come and join us on this thread. All of us on this thread send our special thoughts to those of you who have lost loved ones to this dreadful disease or are facing challenging stages of this disease. All of us have to keep looking forward.
Best wishes
Sylvia0 -
Dear Sylvia and others on this thread
I have been quiet for a little while so I thought I would update you on my own situation. I was diagnosed with TN breast cancer in Sep 2009 and had neo adjuvant chemo with minimal response so chemo treatment was withdrawn half way through. I had the tumour removed on 4th Jan 2010 followed by rads. I have been back at work and all seemed normal - my first year mammogram was clear in Jan 2011. I have had odd bloating and pain in my abdomen and pain just under my right shoulder blade but the Oncologist thought all was well. I had a bone scan due to pain in my tummy / around my ribs and frozen shoulder and that came back clear. Then I found a painful swelling / ridge in my left breast in August. I left it a few weeks thinking it was some odd inflamation that would go away....it didn't. I contacted the hospital and in the last week of August I had a mammogram and ultrasound. NOTHING was found.I felt daft as if I was wasting their time but I KNEW something was wrong. The breast surgeon did a fine needle as she could feel 'something'. She expected the resultsto be normal though. It was the worst biospy I have every had - so very painful. I had massive internal heamorrage in my breast as a result - there was so much blood that is shocked the surgeon and nurse present. I was asked to return on 2nd Sep for the results. I saw another surgeon (the previous lady surgeon had 'left their employment'). He was visibly shocked at the state of my breast. The fine needle was 'inconclusive' and they needed more breast tissue - but had to delay the core needle until 30th Sep as my breast was so badly damaged.I went back on the 30th and the core needle was done. I felt O.K. and was certain all would be well. But a few days later I felt the area where the tissue was taken and it appeared to be too low - I thought they had missed the area I was concerned about. Anyway, went back a week later for results and was told that the last biopsy was inconclusive again so I had to have a third biopsy. This one hurt a lot and definately hit the area I was concerned about! I went back to school to teach that afternoon and I was in so much pain by now! I returned on Tuesday 18th October and was told it was bad news - I now had another cancer in the left breast (my first was in the right breast). I was told that all the biopsies were 'abnormal' but the last one showed cancer. They believe it is quite widespread EVEN THOUGH IT DID NOT SHOW UP ON MAMMOGRAM OR ULTRASOUND. I am now about to have both my breasts removed. They will not give me a firm diagnosis regarding grade and stage of cancer as yet because they simply do not know how bad it is. It seems low grade at the moment but they do not think the biopsy got the worst of it. They are going to wait for the pathology report from my removed breast. Meanwhile, my surgeon has ordered a PET scan as I STILL have abdominal discomfort. That will be on Wednesday. Anyone reading this - please be aware of your own body. You KNOW when something is wrong (even if the scans / tests prove otherwise). I was told that mammos only detect 80% of BC - it's an imperfet test. I will keep you updated on what happens next.
Karen XX
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