Calling all triple negative breast cancer patients in the UK
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Hello Everyone
The thread has gone very quiet. I hope this is because you are all doing well and getting on with your lives. It is the main holiday season now and many of you may have gone off to different places for rest and relaxation and to try to forget about TNBC. I hope you all have a good holiday.I have been reading about the possible side effects of Tamoxifen and I felt somewhat relieved that I do not have to take it. It can cause all kinds of nasty things, including eye problems such as cataracts, high cholesterol and the risk of strokes. I know how awful we all think a diagnosis of TNBC can be, but we have to remember that any diagnosis of BC is no picnic. Those women that ER+ and PR+ have to be on drugs for many years to keep recurrence and metastases at bay, and these drugs are not always successful. If you are in addition HER2+, you have to take Herceptin and this can affect the heart quite badly, according to what I have read.
Recently, I have been reading about a link between taking Tamoxifen for five years for hormonal BC, to reduce the risk of this type of cancer coming back, and the development of hormone negative BC in the other breast. Apparently more research is needed on this. This got me thinking about a comment my oncologist made on one of my visits to her. The comment was that my TNBC had not necessarily started as such, and could have mutated.
I was wondering whether anyone reading this thread has gone through the experience of going from hormonal BC and ending up with TNBC as a result of Tamoxifen.
Are there any of you that have gone from TNBC to have a recurrence with hormonal BC? I was also wondering whether, if you have TNBC and then metastases, you will automatically have TNBC metastases or could it be something else?
I would welcome any comments about any of the above or anything to do with your BC treatment.
Sylvia.
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Hello Sylvia and anyone else on this thread...I recently received 'The Cancer-Fightling Kitchen', by Rebecca Katz, and as I said earlier on, would like to give my impressions of it. Katz is a nutritional educator and a chef at a leading cancer wellness centre in the US...as well as advisor to a number of cancer help programmes...
The book is interesting as it targets both cancer treatment and recovery, focusing on how to eat to best control SEs, the effect of different herbs and spices to aid digestion, as natural anti-inflammatories, anti-microbials, and so on, as well as the best diet to follow after treatment. Basically very similar to what you've mentioned before, Sylvia, lots of specific fruits and vegetables, lots of pulses and lentils for protein, cutting out highly processed foods like white flour, therefore white bread and pasta, and sugar. Although not vegetarian, the focus, apart from pulses etc, is on lots of fish and chicken. She includes all sorts of really appetising looking recipes (great photos), including several delicious looking granitas made from watermelon, and cantaloupe, particularly helpful for those with mouth ulcers.When necessary to sweeten desserts she adds a tsp or 2 of agave nectar, whcih I'd never heard of, but easily found at my health food shop. For those of you undergoing chemo, like me, I thought I'd copy out Katz's suggestions for improving the taste of food when your taste buds are playing up (one of MY worst side effects I can tell you!)
Things have a metallic taste: Add a little sweetener, like maple syrup or agave nectar, & a squeeze of lemon. Apparently, you could also try adding a bit of fat, like a nut cream or butter... not sure about the latter.
Things taste too sweet: Start by adding 6 drops of lemon or lime juice. Keep adding slowly until the sweet taste becomes muted.
Things taste too salty: Add 1/4 tsp pf lemon juice.
Things taste too bitter: Add a little sweetener like maple syrup or agave nectare.
Everything tastes like cardboard (my case after Taxotere): Add more sea salt until the flavour of the dish moves towards the front of the mouth. A spritz of fresh lemon juice also helps.
Haven't tried any of these yet, but will be in the chair next Friday, so will let you know if any of these work for me.
Have a nice weekend, all.
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Sylvia, interesting post about triple neg vs. erpr pos and her2 pos. The first time I had tn cancer I was glad I didn't have to take the anti hormonals, as I was only 36. With my new primary they said it was 3% er pos, still considered neg, and they thought the positive could have come from breast tissue mixed in. I will have all rechecked when I have my bmx but hopefully nothing to check:)
So even though not as many treatments for us, I agree, those treatments are no picnic and can cause other bad side effects. As I see it, there is no good breast cancer!
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me again, just read that there is a huge debate about agave nectar/syrup, some critics stating that it isn't as good for you as others claim, and is in fact highly processed.....why is life so COMPLICATED???!!!
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Sylvia and christina - thank you for thinking of me. My headache is FINALLY under control thanks to the migraine medication Imitrex. My doctor thinks it is simply a bad coincidence, or the Xeloda, and if it is the chemo, she would rather find a way to control the headaches and keep me on the drug. So, I'll likely start it up again Monday and see what happens.
Christina - please try not to worry about your path report right now. I KNOW how scary it is - mine, quite frankly, sucked after 5 months of chemo. But you can't control what is there, and many, many times it is scar tissue. If there is something left, then you pick up the pieces, realize that you still have HOPE, and move forward with possibly a different treatment plan. I spent so much time obessessing over what was in my breast, that I look back and realize it was such a waste. Thinking of you and hoping for the best!!
Maria - that is a great book! I also recommend "The Anticancer Diet" by Dr. David Severin, and "Life Over Cancer" by Dr. Keith Block. The first is a little less extreme in terms of dietary changes, but both offer excellent suggestions for changes you can make to keep you healtheir.
bkj - I was ER+ 3% at biopsy, but 0% at surgery. That is an interesting article...
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Hello Maria_Malta and everyone else.
Thank you for your post and for your information about the book "The Cancer-Fighting Kitchen" by Rebecca Katz. We shall all look forward to hearing about any recipes that you may try out. I do not think that anyone today has any excuses not to try to follow a healthy diet and that diet is really a basic and simple one. In the western world we have gone too far away from a basic diet. As you say, the book you mentioned recommends the same diet, more or less, as I have posted on here from the books I have read. I can imagine that melons will be very refreshing for sore mouths, as is fresh pineapple and especially canned pineapple in its own juice.
As for agave nectar I think it must be the latest fad food. I have seen it mentioned quite a few times and today I saw it in one of the supermarkets. It is a fructose and is still sugar, just like honey and molasses, as well as maple syrup etc. To the body it is all sugar. Another fad is Manuka honey.
Thank you for the tips on dealing with awful taste during chemo. Let us know how you get on if you try them.
Hello bkj66.
Thank you for your post. I was glad to know you found the information about Tamoxifen interesting. Like you, I was glad when diagnosed that I did not have to take Tamoxifen, because I figured, like all these drugs, that it would have bad side effects. I can understand that, at 36, you would not want Tamoxifen, because it brings on premature menopause. I was nearly 63 when diagnosed and it was supposed to be unusual for older women to have TNBC. However, although I think TNBC appears to affect younger women, there are plenty of older women affected. I look very young for my age because I have always taken care of myself. I think it is so awful for such young women to be going through all this nightmare.
When I was diagnosed I was 0 for oestrogen and less than 5% for progesterone, and HER2 negative. I get the impression that these tumours can keep mutating. With the Tamoxifen, it looks as though it can cure one tumour and then you end up with a different one. The drug Arimidex is not without its side effects either! You are right that there is no good cancer.
Keep posting and let us know how you get on with everything. I have just noticed that your first tumour was in your right breast, so was mine. I asked about this once and was told that, on average, left breast is more common. I do not know if this is true.
I also noticed that you have said that you are BRCA1+. Is this a recent diagnosis or were you BRCA1+ the first time?
My understanding is that stage 4 is only for tumours that have spread far from the original site, such as lungs, liver, brain and bone. Positive nodes around the breast area are not considered as stage 4, as far as I know.
Hello Suze35.
Thank you for your post. I was glad to know that your headache is finally under control. I can understand why your doctor would rather deal with the migraine than taking you off chemotherapy. I have looked up about Xeloda and cannot find that migraine is a possible side effect. Nausea, vomiting, diarrhoea, fever, sores in the mouth and hand-and-foot syndrome are quoted. These are the common side effects of chemotherapy drugs.
I have also found that this drug, chemical name capecitabine, which can be taken orally, requires an intracellular enzyme to convert it to its active form. Apparently, breast cancer cells contain more of this enzyme than normal cells, which allows capecitabine a selective advantage in killing cancer cells over normal cells. It looks as though this should be a very effective drug.
We shall all be thinking of you on Monday.
I was just having another look at your details, because, with so many posts I have to keep refreshing my memory. Am I right in thinking that you have been diagnosed as metastatic because of lymph node involvement? It is a bit confusing if doctors are using different criteria for what is metastatic and stage 4.
Best Wishes,
Sylvia.
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Hello Everyone,
I was just looking up information about the various stages of breast cancer. I think the best explanation of these stages is on breastcancer.org. It is right up to date, July 1st 2011.
http://www.breastcancer.org/symptoms/diagnosis/staging.jsp
For those of you newly diagnosed, I think you will find it clear and precise. For those of you in the UK, are you now being given your pathology report or requesting them? I think the explanation of the stages will help you understand the pathology report.
It looks as though you are considered stage 4 if, in addition to those I have already mentioned, you have distant lymph nodes affected, and the skin affected.
I hope Josephine, Karen3 and Gillyone are having enjoyable holidays if they have already departed to their destinations.
Sylvia
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Hi Sylvia,
I am actually Stage IIIc, as my disease is still considered local (but advanced) and I have no skin involvement. My doctor does consider me recurrent because I had supraclavicular nodes show up after surgery, and that makes a difference in what treatments my insurance company will approve. With a little bit of luck and a lot of hope, I won't progress further.
My doctor is covering her bases by making sure the Xeloda wasn't causing the migraine. She thinks it was just bad timing, but we will know for sure this week. You never truly know what these drugs will do, that's for sure!
You do such a great job researching! Thank you!
Jenn-UK - best of luck to you. I am also on Avastin. It isn't a wonder drug, but when it works, it really works!0 -
Sylvia, I didn't know I was brca1 positive the first time, I wasn't tested but always knew I would test positive. My mom died of ovarian cancer and 2 aunts had breast cancer diagnosed before the age of 40. I loved my first mo, but he was just not aggressive about certain things. My new doc is very aggessive and is looking at everything and scheduled the dna testing right away. So at some point I will be having a hysterectomy, he says just the ovaries out is not enough for me as ovary cells might be hiding and he wants it all out.
Yeah, that is why the dispute of stage 3/4, the location of one or two if the positive nodes, still in the breast area, but in under the mammary chain, one is connected to one of the positive mammary nodes. No skin involvement with me either. It is very scary, as surgery can't be done, but mo is saying that rads will clean up what the chemo might leave behind, and the chemo seems to be working good so far. I still like to say I am stage 3!
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According to that tmn staging link I am stage 3! Positive nodes near the breast bone count as stage 3c! I don't know why the radiologist had it as stage 4, I read the report and recieved a copy. My surgeon and mo both have said stage 3, but surgeon did say some would consider it stage 4. Very confusing, and I guess it doesn't matter as it is the treatment I receive that counts, and I am being treated aggressively.
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bkj - the staging guidelines were changed not too long ago when statistics showed that women with nodes like us acted more like Stage III than Stage IV in terms of overall survival. Some doctors are old school, so they may think it is Stage IV, but the stats don't bear that out. I'll take it, lol!
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Hello jenn-uk
Thank you for your post.I think it is a bit much that you were told you could not have your path report. After all, that report is about you and belongs to you. I think, in this country, we are all going to have to become a lot more assertive.
I was interested to know that you were told that the staging system in the UK had been changed and replaced by the TNM system. I was reading about that yesterday on breastcancer.org and I posted the reference yesterday. I hope you have had a look at this reference, as it should show you what your stage IIb equates to on the TNM system. I think the numerical staging is better and easier to understand and I do not think it is sensible to have two different systems for staging.
You mentioned that you will know about the node status after surgery. Have they talked to you about the sentinel blue dye test? My understanding is that this enables you and your surgeon to know what lymph nodes are affected before any surgery is performed. Apparently, any cancerous nodes show up with this test.
I was very interested to know about the chemotherapy drugs that you will be having. It looks as though they are using more and more combinations. That is probably a good thing as there is more chance of some working and others not. It is interesting that the EC (epirubicin and cyclophosphamide) are being used towards the end. I was wondering if these two drugs that have been used for a long time may eventually be phased out. They do have nasty side effects. Please let us know how you get on and what side effects you feel. Remember, ginger is wonderful for any feelings of sickness, especially ginger tea and lemon, ginger root brewed as a tea, ginger biscuits and the ginger capsules that are easily obtainable. Diet ginger ale is also good. If anyone else is on the same chemotherapy drugs that jenn-uk will be taking, please post and let us know.
I hope all goes well with your haircutting and wig fitting. I think you may be surprised at how good and natural a wig will feel. I loved mine and after the first wearing I never felt inhibited. Friends kept saying how lucky I was not to have lost my hair!!! Scarves and hats were definitely not for me. At home I wore a very smart turban that I bought along with my wig at House of Fraser. It was very useful at night because you will be surprised at how cold you can feel when your hair has gone.
About Tamoxifen and other hormone-based medication, I think the only answer to your question is that the NHS does not practise a great deal of preventive medicine.
From everyone here I want to say good luck on July 25th and keep looking forward.
Best wishes
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Hello Suze35.
Thank you for your post. Thank you for explaining what your situation is. It is strange that the supraclavicular nodes showed up after chemotherapy and surgery.I was interested in what you said about what happens with regards to your insurance company approving drugs. Reading other threads, I get the feeling that everything is much easier to obtain with your insurance-based medical system than our state run NHS, which never seems to have enough money. Are the insurance companies difficult about what treatments etc. they will cover?
We are all keeping our fingers crossed for you that everything will go well and that the drugs will do the trick. Please keep us informed.
Hello bkj66.
Thank you for your post and for filling in the details about your TNBC. On this thread we all hope that the chemotherapy will work for you and that the radiotherapy will do a good job of mopping up any stray cells. I am not a doctor, but given what you have said, and if that were me, I would be thinking of myself as stage 3 as well.
It is unfortunate that you were not tested for BRCA1 when you had the original diagnosis in 2002.
I was glad to know that, according to the TNM staging link, you are stage 3. I think it is about time the medical experts used one system or the other. It is bad enough being diagnosed with BC and we need all information to be simple and clear cut. There is enough stuff buzzing around in our heads about BC that our own case has to be stated clearly to us and no stone left unturned.
At least you are being treated aggressively now and that is what is needed.
Good luck from all of us.
Sylvia.
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Hello again Suze35
Thank you for your posting about the new staging guidelines. I am sure that information will make a lot of women with node involvement feel much better.To everyone on this thread, whatever your stage, be optimistic and remember that there are all different kinds of treatment available.
Finally, I was wondering how Brena was getting on. I was also wondering how Chilimac was coping and how her sisters Karina and Natalie were doing.
How are you sue lynn? How is your mother doing with the TNBC mets and the AR+ diagnosis?
I hope all is well with eskimo53, BritchickUSA, Luah, and mccrimmon324.
That is all for today.
Best wishes.
Sylvia.0 -
Hi Slyvia,
I'm doing ok, getting ready for treatment # 3 on Thursday, then I'm 1/2 way done. Sometimes it seems like times moving quickly then other times it seems as if time isn't moving at all!
Take care everyone.
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Ok, kind of reeling here. We had thought I was getting a really good response from the chemo but I had my mastectomy Thursday and there was still a 2 cm tumor, both DCIS and invasive, positive for cancer - and 2 positive lymph nodes, the largest 9 mm. There was no vascular involvement found around the tumor and no extracapsular node extension. The original tumor was 2.5 x 2.1 - this remaining tumor is supposed to be "flat" so I don't know what the width is yet. I am going to call and get the pathology report.
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Christina,Does chemo kill dcis? It sounds like you got some good news-no vascular invasion and no extracapsular invasion. I also worry about what is left over after my chemo, scans seem to show one thing and the real path report shows something else, can be a bit discouraging. My scans so far have showed shrinkage, I still have 3 more months of chemo before surgery. Have the docs mentioned more chemo or just going on to rads?
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BK,
I don't know the answer about the DCIS - I never considered the possibility that part of the tumor was DCIS. Makes sense that it would be, though. I see on the residual tumor burden calculators from MD Anderson that the percentage that is left that is DCIS is a significant factor in prognosis. It is one of the factors that goes into the calculator.
I was disappointed that no scans were ever done during my neoadjuvant chemo until the very end when a head to hips CT scan was performed. That scan showed no cancer anywhere but it is my understanding that the CT isn't very good to view the breast area. My oncologist was going by measurement and feel during my treatment. We both felt the tumor soften and reduce in size. I think the standard of care is only clinical exam so I didn't really push for scans. Now of course I wish I had. I am going to ask for more chemo but don't know if I can get it. This oncologist is considered one of the best in town and he was very aggressive in terms of the chemo I received - TAC - so maybe I will be given something else before rads.
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Sylvia - my insurance has actually been great, the only treatment I have had to "fight" for was Avastin. They have approved all of my scans (quite a lot) without question, and my out-of-pocket expense has been minimal. I think there are pros and cons for our system versus yours - perhaps I might have access to some more "out of the box" treatments, but that doesn't necessarily mean better outcome.
The reasons my nodes showed up after chemo/surgery is because my cancer stopped responding to chemo towards the end, and started to spread and we did not not know it. It stinks, but so far my scans are clear and we are hopeful that my initial good response and adjuvant therapy will improve my outcome.
Christina - I can empathize with your feelings. Having a less-than-expected outcome is devatstating. DCIS does not respond to chemo, so keep in mind that it accounts for a portion of your residual disease - mine was 1/3 of what I had left. Also, try and find out if your nodes/tumor showed chemo effect - mine did, and we determined in the end I had about a 50% response to the chemo. Not GREAT, but could be worse. If your doctor offers more chemo, it will probably be Carboplatin or Cisplatin with Gemzar. This combo has proved very effective for TNs. There are no studies to show that more chemo is useful - but clinical trials are underway now to see if it does, and I feel it is important to do all we can to fight this the first time. My best wishes going your way!!
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How come DCIS doesn't respond to chemo?
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mccrimmon - you know, I don't know! That is always what I have heard, but in playing with Google, I can't find any reliable information about it!! But, I will say DCIS is considered "pre-cancer" and not invasive, and I found a research study that showed that residual DCIS as opposed to true PCR does not change overall survival:
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Suze35, I have my #3 treatment on Thursday, if I remember I'll ask my onco and post. He's pretty awesome, he talks in studies so if he's read it he'll tell me about it.
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Hello mccrimmon324
Thank you for your posts. I was glad to know that you are doing alright and I just wanted to say that we all hope that everything will be fine tomorrow for your third chemotherapy treatment. Let us know if you have any bad side effects.Hello christina1961
We all hope that you are recovering nicely from surgery. Try not to worry too much about anything else for the moment. Surgery takes it out of you and you need to rest and recover. The most important thing is that with the mastectomy everything should have been removed.
My understanding is that tumours can be a mixture. I have heard different opinions about DCIS, which are a bit confusing. Some have said that it is not put into breast cancer statistics. Others say that it is pre-cancerous deposits that may or may not develop into IDC (invasive ductal carcinoma) which is the most common type of breast cancer. Breast cancer can be classified into two basic types, non-invasive and invasive.
If any of you have any useful information about DCIS please post your comments. If any of you have been diagnosed and treated for DCIS please let us know. A friend of mine told me about a friend of hers who was diagnosed with DCIS and insisted on surgery to deal with it, even though she was told that this was not necessary.
Hello bkj66
Try not to worry too much about what is left after chemotherapy. Chemotherapy does not necessarily shrink the tumour completely. As you will perhaps remember, I had a large tumour, 7 cms, which shrank about 2 cms during chemotherapy, before surgery. I then had a mastectomy and a good pathology report. This was followed by radiotherapy. Six years later I am still here to tell the tale. Get yourself through chemotherapy first, as it is the most challenging part of the treatment.
I also had deposits around the collarbone, discovered during tests before treatment and these disappeared during chemotherapy. The one node, the sentinel node, affected was removed during surgery and six others that were clear were also removed.
As far as DCIS is concerned, the main treatment is apparently surgery. My information is that provided all the DCIS is removed from the breast this should be a cure.
Some women with DCIS have radiotherapy after surgery.
Hello Suze35
Thank you for your post and and all your useful information. We are all thinking of you on this thread and wishing you all the best.
I was interested in what you said about your fight for Avastin. Last night on the television news I just happened to catch a snippet about a woman in the Midlands in the UK and Avastin. Apparently the NHS in her part of the country is refusing to fund this for her and she is having to pay. I do not know whether it was for breast cancer or some other kind of cancer. It looks as though we still have a postcode lottery here, because it was stated that the drug is easily available in London. Another drug was mentioned that someone else is being refused. I think this is a shocking state of affairs in this country and I urge all UK patients reading this thread, not to take "no" for an answer when it comes to any drugs that are available. Remember all the media coverage in this country in the past about Herceptin and how very ill women were having to go to court to get this drug.
Best wishes to you all.
Sylvia0 -
Hello Everyone.
I hope all is progressing well with all of you. I have noticed that those of you in the UK have gone very silent and I hope this is because you are all coping and doing fine. I thought I would try to clear up a few things. First of all, for those of you newly diagnosed and using this thread for the first time, it might be useful to take the time to go back to page 1 of the thread, so that you have a complete picture of all the information, comments and experiences that have been posted.It looks as though we are now into a discussion about DCIS, so I thought I would post some of the information that I have from reading and research etc.
As stated in the previous postings, there are two main types of breast cancer and they are non-invasive and invasive. A good book for reading about this is "Understanding Breast Cancer" by Professor Mike Dixon, published in association with the British Medical Association. I have found this book very clear in its explanation of every aspect of breast cancer.
Non-invasive breast cancers are divided into DCIS (ductal carcinoma in situ) and LCIS (lobular carcinoma in situ).
These two types are sometimes described as pre-cancerous.
Apparently, there are often no signs or symptoms of these and you would probably not be aware that you had them unless you had a mammogram where they show up as microcalcification and the flecks of calcium are small.
DCIS may develop into invasive cancer if not treated.
DCIS is classified as low grade, intermediate grade, and high grade. For more details on this I would recommend reading the book.
Treatment for DCIS. Surgery is the main treatment and if all the DCIS is removed from the breast this should be a cure. Surgery can apparently be breast conserving or mastectomy, depending on how extensive the DCIS is. With a mastectomy some lymph nodes may be removed for examination.
It looks as though DCIS can be positive or negative.
LCIS (lobular carcinoma in situ). This is also sometimes known as lobular neoplasia. My understanding is that this does not show up on a mammogram but is most often found by chance when a breast biopsy is looked at under a microscope.
Women with this apparently do not require treatment unless there is a strong family history of breast cancer. Since there is an increased risk of breast cancer with lobular neoplasia, regular screening for ten to fifteen years after diagnosis is advised.
Any comments or experiences that you may have are most welcome.
We can discuss invasive breast cancers another time.
I have also discovered on breastcancer.org on the forum DCIS (ductal carcinoma) on the thread DCIS Facts and Misconceptions a most interesting and detailed post by Beesie about DCIS. I found it most interesting.
In a French newspaper that I read yesterday, there was mention about cancer and targeted therapies. It stated that they were about three or more years away.
I was wondering how TEK2009 (Tessa) was getting on, as well as Alif (Alison) and debbyanzalone. I hope all is going well debbyanzalone with your consultation that I think is today. I hope all is well with BernieEllen.
That is all for today. Best wishes to all of you and enjoy what is left of summer. September and the start of a new school year and the end of holidays is not that far away.
Sylvia
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Hi to everyone, been off for a while, computer had to be repaired. Missed a lot of earlier posts but would like to say - never liked anything sweet (don't eat chocolate, cakes or biscuits) but after each chemo session i now crave chocolate cake for three days. I have always eaten butter but that's the only oil i have. I have read a lot of research on stress and chemicals being such a part of modern day and how they poison our bodies and maybe cause cancers. For years i have tried to live chemical free, parabens are poison and are in so many products, ie. shampoo, deodorants, etc. All aerosols have damaging effects. Don't mean to go on but it's all worth looking into.
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Sylvia,
Thank you for the information regarding DCIS. This remains one of my favorite threads; I feel that I learn so much from it. Unfortunately, my pathology report did not reveal how much of the remaining tumor was DCIS. I want to do an analysis of the "residual tumor burden" per MD Anderson's calculator but I do not have enough information yet. I feel very encouraged that you are six years cancer free and had some remaining tumor following neoadjuvant chemotherapy. By my crude calculations based on simple volume formulas, my tumor was reduced approximately 40% in size but I still had two positive nodes out of 16 removed. Was your sentinel node positive following chemo?
Bernie Ellen, My diet during chemo was not the best although I craved salad and fruits mostly - but during the end my acid reflux began to dictate what I could and could not eat. Now that I have completed chemo I am trying to stay away from all sweets and slowly adopt a more low fat diet. I am leaning toward less toxic personal products for my future, also.
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Suze,
Thank you! The path report did not reveal the details of response to chemo but the palpable lymph node under my arm became non -palpable during the chemo.
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Hello christina 1961,
Thank you for your post. I just wanted to say that I did not know anything about the status of my nodes until after my mastectomy.After surgery I was simply told that seven nodes had been removed and that only one node,the sentinel node had been affected.Please try not to worry too much and to think too far ahead.A wise counsellor told me to worry about one thing at a time.
Hello to every on this thread and to say best wishes to all of you.
Sylvia.
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Hello Everyone
I have just checked the thread to see if anything is happening, but it all appears very quiet. I hope this is because you are all out enjoying a summer's weekend with your friends and family. I suppose it will be quiet now because in the UK the six weeks summer holiday from school has begun and many of you will be busy with your children.I hope all is well with those of you at present going through chemotherapy. Christmas is only five months away and those of you who post regularly about your chemotherapy treatment will have it all well behind you by then. Keep looking forward Suze35, christina1961, mccrimmon324 and bkj66. I would also like to say hello to gillyone. How did your trip to the UK go?
If suelynn is still viewing but not posting, I am sure we would all like to know how her mother with TNBC and androgen+ and with mets is doing. We wish her all the best.
I hope all is going well with JennUK and the chemotherapy treatment and was wondering how debbyanzalone is going along after her consultation. We have not heard from Alif and I just hope all is going well with her chemotherapy. As for Maria_Malta, I was wondering whether you had tried out any of your healthy recipes and BernieEllen eat chocolate cake if that is what you are craving as you go through chemotherapy! I hope things are better with TEK2009. We have not heard from you in a while and we all hope no news is good news.
To Karen3, we hope you are enjoying your holiday in Turkey and that Josephine is enjoying hers in the USA.
In the media there have been snippets of news about breast cancer these past couple of weeks. Diet and exercise were again stated as being connected to the development of breast cancer. Our western diet was again condemned and the general bad eating of many people. The more exercise the better we do.
Another idea much in the news has been about how taller people are more at risk of developing breast cancer and cancer in general. It is something to do with growth hormones in our food as children. I am 5' 10"!! I have always been tall and thin.
Development of breast cancer and exposure to light at night has also been back in the news.
I was wondering whether any of you using this thread are taking part in any trials for new drugs. If you are please let us know.
We have also been devoting a lot of the thread to chemotherapy treatment, but I was wondering if any of you going through radiotherapy are having any problems. If so please let us know.
We have not mentioned lymphoedema that much, but many women suffer from it after surgery. If any of you have problems with this please let us know.
If any of you have any special types of tumours in the invasive type, I am sure we would all be interested to know about them. These tumours include tubular, cribriform, mucinous or mucoid, papillary, medullary, and lobular.
Most breast cancers, about 85%, are classified as cancers of no special type and they are commonly called invasive ductal cancers.
Reading through some of the other threads, I noticed someone writing that they had TNBC and metaplastic. Does anyone know about this?
That is all for today. If anyone has any comments, please post.
Sylvia.
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Hello Everyone
I just wanted to say hello as I was wondering what everyone was doing. I would be interested to know how you are spending the summer months and if you are doing anything out of the ordinary for your holidays. Are any of you going off to really exotic places? Here in Exmouth, it is very busy along the seafront with all the people that have decided not to go abroad this year. There is a holiday park here as well, known as Sandy Bay, and about 18,000 people a week come here every year. It makes it really busy in the shops. Sometimes the beach is packed on the Exmouth seafront, but with our changing weather it is sometimes deserted. Here is a link to the web cam on Exmouth seafront.http://www.exmouthcam.co.uk/webcam/
I have been busy doing a lot of gardening in the grounds of our apartment complex and keeping an eye on some of the lonely, elderly people.
Reading one of the other threads, I was sorry to hear that BernieEllen had had to have her chemotherapy postponed, because of low blood levels. I am sure we all hope that she can get back on track soon.
I was very interested to read on another thread that Suze35 will be starting Zometa and Metformin next week. I was especially interested about the Metformin. I had read about the possibility of using Metformin, a common diabetic drug, for use in breast cancer, but I had no idea that it was being used other than in trials. I know that it was thought this might be a successful drug. This would be really great because it is relatively inexpensive. Are any of you being prescribed Metformin?
Do any of you know anything about beta-blockers being used for the treatment of breast cancer?
Getting off the subject of breast cancer, I was wondering what you all do for relaxation. What do you like to watch on the television and what do you like to read?
This thread will have been going for a year on September 12th 2011. I would welcome your comments on what you think about it and where you would like to see it go in future. Have you any ideas for improvement? This is our thread and we have to make it relevant together.
Best wishes
Sylvia.0
