Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Kath,
Thank you for your post and your help. If I ever get to the bottom of what caused this sudden swelling on the lower right arm, I shall let you know.
I think it is a good idea that you have started yoga as it seems to be highly recommended for cancer patients. We are told that yoga, Pilates, mindfulness, and meditation are all good mentally and physically.
I do hope it helps to relieve the osteoarthritis pain.
I think all of us just have to cope with everything that is thrown at us. We have to live one day at a time and give thanks for that.
I hope all is going well with your family.
Fond thoughts.
Sylvia xxxx
0 -
Hello Marias,
Thank you for your post. I am glad to know that my words of support help a little. You are going through such a lot.
Thank you for the link in Spanish. I am going to print it off and read it carefully.
I was interested to know that the redness in your breast is dermatitis. Do you have a special cream to put on it? If you have, I would be interested to know what it is.
I thought the word you meant to use was polyps. I think they are very common in many people.
It is good that you have the problems with the ovaries and cervix behind you. I was amazed at how quickly you got out of the hospital. The doctors and surgeons these days do not keep patients very long in the hospital. Here in England there are always problems with superbugs in the hospitals and you need to get in and out as quickly as you can. I think we all recover better at home and with friends and family to support us.
I do not understand why you were not told about the polyps before. Have you any idea?
I do hope you will now be able to relax a little and make a full recovery from all of this.
Do you have any of your family with you? Do you have any painkillers to help with your pain?
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
0 -
Hi, Marias
I am so glad to see you back! You have been through so much in the last year, you are a very strong woman. Now I hope you can get some rest, and recover from all that has occurred.
I see that you had a myoma of the uterus and polyps of the cervix. Those things are gone, and you don't have to worry about that anymore. I am curious why you had the ovaries removed, was there a genetic test that indicated surgery? I apologize, this was probably covered in a previous post, but I am not sure.
We have been thinking of you and wondering how you are, I hope things keep getting better and better for you from now on!
We will talk again soon, when you feel well. Thanks for the picture and link to the article on breast dermatitis.
Love, Mary
0 -
Hi, Sylvia
The problems you are working through have made me think a lot more about lymphedema. I was reading over an article about lymphatic drainage and I came across this one. I am linking to it because in the last paragraph it mentions a flu vaccine, which I thought coincidental, and I thought you might be interested.
http://www.massagetherapy.com/articles/index.php/article_id/1200/Lymph-Drainage-for-Detoxification-
Mary
0 -
Hi, Sylvia
As I mentioned above, your situation has made me more aware of lymphedema, and its' apparent ability to appear at any time. I had no knowledge of it pre-cancer, and I wonder why it is not mentioned more when all these things are happening to us during our BC surgery, chemo and radiation. I think my BC surgeon was thinking about it when she only removed 3 nodes during surgery, she told me that 2 had micro-mets, but after removing one more she was confident that was all, and she was hesitant to remove any more. She did not mention lymphedema, but apparently the more nodes a patient has removed the more chance there is to get it, although there are no guarantees.
I agree, it must be so very depressing for you to have been through so much, and live such a healthy lifestyle and find yourself with this condition. I think it is depressing to think it can happen to any of us at any time!
I read with interest about lymphatic drainage done by oneself, and the difference between that and drainage done by a qualified therapist. The article I linked to has information about self-drainage, and it's simple.
Do you now have lymphedema in your leg? You say in your post to me, "I was asked what I wanted to achieve with this swelling of the lower limb." I thought it was swelling in your arm only? Is it in your leg now too?
I see that you suspect the culprit in your case is using a heavy vacuum cleaner, or the flu jab you just had. I did read Kath's posts, it is good to have Kath the nurse on board who has ready access to a lot of information.
I was never advised to do lymphatic massage, or not to overuse my right arm. My MO sent me to lymphedema therapy immediately after chemo, because I had so much right arm and shoulder pain. That therapist said I didn't have lymphedema, and then the GP ordered an MRI that found I had torn rotator cuff and torn bicep muscle. So the pain has been attributed to that ever since. I wonder now if some of it might be a little lymphedema, but I was never advised on doing anything about it. Or the neuropathy, for that matter. I had to find out about that pretty much on my own. I think cancer care around here (not big city) is in infant stages, but at least I notice the Center where I went has hired more doctors and perhaps they are going to offer more comprehensive care than I received.
I regularly overuse my right arm, because I enjoy doing physical things but the side effects of my cancer journey have taken most of that enjoyment away because of the pain it causes.
I do not know anything about the Hivamat Therapy Massage. As I said, not much was ever told to me about all this by my medical team.
I am kept busy by being part-owner of a business, I do not work hands-on in the business, but do devote about a week 4 times a year to meetings all involved with the goings-on in that business. I am a member of my local church and choir, we do practice regularly in the evenings. We have meals and other benefits to raise money for things occasionally. I also have my home and a farm, that is probably getting too be too much for me to see to. I have a constant stream of people in and out sometimes, to fix problems that some up, it is a lot to keep up with by myself. I overdid things again yesterday, and I think today I am going to be as lazy as possible to try and recuperate!
I have my 6-month visit with MO on Tuesday Oct. 24, I am going to ask her about lymphedema when she is examining me. I did have a clear mammogram last week that she will comment on, but I always tell her I have not much confidence in that, since mammogram missed my initial tumor. Last year she ordered an MRI as well, apparently the insurance allows that if a patient has dense breasts. A nearby hospital is also offering a new technology for women with dense breasts, it is an automated whole-breast ultrasound. I don't know if it is in addition to MRI, or on its' own. The Center I go to does not offer that, but I think the MRI is the better of the two tests, just more expensive.
I think I should explore getting a arm gauntlet for when I am flying, it would probably be a sensible precaution.
Once again, I am so sorry you are going through all this, but once again you are educating the rest of us!
I must be off for right now, talk to you soon,
Love, Mary
0 -
Hello Mary,
Thank you for your latest post written yesterday.
I think we all ought to be aware of the fact that we are all susceptible to lymphoedema and that it can pop up at any time. Like you, pre-cancer, I had no knowledge of lymphoedema. I just knew about oedema as swelling around the ankles from valvular heart disease because my mother had this. She was also vulnerable to pulmonary oedema.
Like you, I am wondering why it is not mentioned when a patient is first diagnosed and can be vulnerable to it from all of their treatment. It can come from any surgery, not just cancer surgery. It can come even if you do not have node involvement, as I understand it. It can come from radiotherapy treatment and I should imagine from chemotherapy. What is sure is that all our cancer treatment is lethal and it leaves us with impaired functions and who knows what else. It could be it is not mentioned because a patient is already in shock and afraid from a cancer diagnosis, and very afraid of the journey that they will have to embark upon to attack cancer cells, stay alive and reach no evidence of disease. I still believe we should have all the facts given to us so that we can make a truly informed consent.
It looks as though we only become aware of words such as lymphoedema if we present with symptoms and need treatment. After I had finished my treatment I had a slightly puffy hand, phoned my breast cancer care nurse, who mentioned lymphoedema, and I got refereed to the lymphoedema clinic. I had two appointments there, had my right arm measured, was told it was just borderline and got measured for a compression sleeve. I was shown how to do the manual lymph massage. I returned for a second appointment, was given a sleeve and told it was up to me whether I wore it or not. That was way back in 2006 and I had no problems until recently.
I think lymphoedema awareness should be an important part of our cancer journey from the very beginning. It seems as though you can get lymphoedema in any part of your body since we have lymph nodes throughout.
I would think the more lymph nodes you have removed the worse it is.
I do feel somewhat disappointed to have this now, but I shall deal with it.
I do not have lymphoedema in my leg. Perhaps I did not express myself clearly. I have lymphoedema in the lower part of the arm, between the wrist and the elbow joint. The lymphoedema specialist I saw told me this is good news in that it is much worse if you have it in the upper part of the arm, from above the elbow going up to the shoulder.
There has been very little change in the swelling since I noticed it a couple of weeks ago. I am doing exercises to keep the arm on the move, doing my gently manual lymphatic massage, keeping my arm elevated and keeping hydrated. I need to get a sleeve and try it as this seems to be the way to deal with it. The NHS is overwhelmed at the moment and I think I could be in for a long wait to get an appointment at the lymphoedema clinic.
All I was told about my right arm when I went through treatment was not to have any injections in that arm and not to have any blood pressure taken in that arm.
By the way, lymphoedema is painless, at least that is what I have been told. I have no pain and if I am wearing long sleeves I would not know I had anything wrong. Lymphoedema has apparently three stages (sound familiar?) and I hope mine will stay at the beginning stage.
On line I have found the best information on Cancer Active and Chris Woollams was on to it way back in 2004 in icon magazine. I clicked on Health Watch Chris Woollams Cancer Active and found an interesting article on that page by Marie France Bewley. It is only two pages long and you will find listed General Precautions and The Three Stages of Lymphoedema.
The following sentence was in bold: In Lymphoedema, time is of the essence. Wasted time doth waste the body.
Let me know what you think.
I shall stop now and continue in a later post.
Love.
Sylvia xxxx
0 -
Hello Mary again,
I think you can have lymphoedema and, since the experts measure it, they probably have a number for which you get continued appointments and anything below the number, you get a compression sleeve and are left to get on with it.
As for neuropathy, it is the same. It does not get mentioned, unless you devlop symptoms and ask questions about them. At least that was my experience.
Like you I use my right arm normally and have done so ever since diagnosis. I have continued gardening but have been vigilant about my arm. I was for some reason aware that I should not get stung, scratched or hurt my arm. I probably researched that myself. I always keep my arms covered when gardening.
That is about all for now. I read the article in Spanish that Marias sent and I have learned something new, the term Radiotherapy dermatitis and acute radiotherapy dermatitis. This is something else I have never heard mentioned.
I shall answer Marias tomorrow, so watch this space. I also have a very short article from a serious magazine entitled Focus. It is entitled How does radiation kill cancer if it causes cancer?
Hope you had a good weekend.
Love.
Sylvia xxxx
0 -
0
-
Hello Sylvia,
I normally post on Sundays, which is when I usually have the time and energy to do it. But I went to a one day yoga retreat yesterday, so I didn't get to it. The retreat was very peaceful. We did gentle yoga, learned some Tai Chi, had a home cooked lunch, and also had some interesting conversations. There were several world travelers in the group. We finished with a lot of relaxation exercises. It was a really good day.
The retreat was held in a very minimalist home, where they have very little furniture, and don't own a TV. We all agreed about the Christmas gift dilemma, and thought maybe asking people for the "gift of time," as in a gift of their time, would be an option. We also thought it might be worth trying to take someone out for a meal as a gift.
When we flew recently, I did some simple exercises, in addition to trying to move around often - though I'm told that my lymphoedema risk is minimal. I had radiation, and I don't think the doctors know as much as they would like to know about it.
I appreciate all of the detail that you've provided about lymphoedema. I'm also glad to hear that that your GP feels that you are otherwise fairly healthy. I know you're not looking forward to being back in the system again. I would feel the same way. I also know they're about to get an extremely informed patient. I hope things settle down into a manageable routine for you soon.
Pam
0 -
Hello Marias,
Thank you for the link. Norfolk is very far from Devon.
I have done everything I can do here to get an appointment with the Lymphoedema clinic in Exeter in Devon at the hospital where I had my treatment. Everything is progressing. I have an appointment with my former consultant at the hospital on October 31st. I shall then be referred to the Lymphoedema clinic and wait for them to contact me for an appointment date.
It is a slow process because the NHS is overloaded, understaffed and overwhelmed.
I am lucky to know a private lymphoedema specialist whom I have already seen and I can always go to her for help and advice.
In the meantime I shall take care of my arm through exercises, doing my own manual lymph massage and keeping my arm elevated when needed.
Thank you for your help.
As far as communication goes, everything must go through bc.org.
How are you today? I shall post more later.
Abrazos
Sylvia xxxx
0 -
Hello Pam,
Thank you for your interesting and gentle post. I always learn something from you.
I shall talk tomorrow.
Love.
Sylvia xxxx
0 -
Sylvia - sounds like you are doing all the right things to aid the lymphodema in your arm. It must be frustrating having to wait for your appointment in order to get back into the NHS as an active patient. You have been fortunate to have already seen a lymphodema therapist - they really do know what they are talking about, and you are doing all that you can in the meantime. At my exercise class at the integrative cancer facility that I attend, they encourage us to open and close our our hands above our shoulders to assist in the lymph drainage.
I went to a lymphodema therapist a few times after I had a fall and had pain in my truncal area. The touch they use is so light, isn't it? She told me that I did not have lymphodema, but that having the MLD occasionally can be beneficial. She also gave me a long list of do's and don'ts e.g. avoid cuts, take great care while gardening, do not lift heavy stuff, no blood on that side, or blood pressure - all the things that you have been told. I thought it was a bit over the top to be honest because I do like to carry on life as normally as possible. I have not had any measurements done on my arms. I wonder if this is a good idea? Since I do a fair share of long flights, it has crossed my mind to get a compression sleeve, but then it seems like so much work if I do not have a problem - maybe I should be more diligent. I am going to read that article in Cancer Active.
Hoping you will continue to rest and thankfully your arm has not got any worse. It is perplexing what could have brought this on. I look forward to hearing what your breast surgeon has to say? Take care, Sylvia.
0 -
Hello Marias,
I do hope you are feeling a lot better. What is your next step in all of this? I thought you were going to have to have surgery for your thyroid?
We are certainly learning a lot about other things connected to our cancer journey, other than chemotherapy. We have had lots of discussions about chemotherapy, the toxic drugs, the side effects and so on. This is probably because it is the longest part of the journey and many patients feel really unwell.
After the chemotherapy, the radiotherapy treatment seems a lot easier and does not last long. I sometimes wonder if patients realise just how toxic it is.
With your problems with your cancer journey we now learn about radiodermatitis. I had not heard mention of this before, even less about degrees 1 and 2 of dermatitis. I do hope that if anybody else has suffered from this, that they will post in and give us details. I picked up also on acute dermatitis. Is this what you have?
It is worrying to read that anyone undergoing a radiotherapy scheme will experience some degree of dermatitis.
It looks as though, according to this paper, that just like with chemotherapy patients fare better with lower doses of radiation, just like lower doses of chemotherapy.
Those photographs of affected breasts are quite frightening to look at and I think the make patients quite frightened.
There are common sense comments about looking after your skin and there does not seem to be complete agreement. I would think being scrupulous about hygiene, washing gently, using soap with no metal and the proper creams, all makes sense.
I remember my oncologist telling me not to use Dove soap during treatment and that there was a risk of inflamed lungs from radiotherapy.
I was never told that radiotherapy and any kind of surgery could cause lymphoedema.
I do hope new patients are being told more and that they are asking more and more questions so that they are fully informed before signing any consent papers.
It is quite a dilemma. Every aspect of our cancer treatment that is done to keep us alive and bring us into no evidence of disease, seems to be hazardous and can cause the cancer to return.
That is about all for now.
Love.
Sylvia xxxx
0 -
Hello Pam,
Thank you for your post. It sounds as though you had a very enjoyable and useful day at your one day yoga retreat. Yoga and Tai Chi seem to be coming up very often as two activities that are very therapeutic in every way.
I was glad to know that you had some interesting conversations. What kind of topics of conversation came up?
I like your idea of "the gift of time" and taking someone out for a meal.
I think it is a good idea to do exercises and move around on a plane trip. These flights are not conducive to good health and the air in the cabins in very bad. Everyone I know around here is very unwell after a plane trip.
I was interested to know that you have been told that your risk of lymphoedema is minimal. I am wondering what that was based on?
Thank you for your kind words. I shall keep everyone posted about what goes on with me. It looks as though this manual lymph drainage (MLD) is beneficial but here you can only get it privately and it is expensive. I did have one session last week, along with the Hivamat machine massage therapy. It certainly makes your affected arm feel lighter but that wears off. All this therapy is supposed to be accompanied by bandaging and un-bandaging of the affected limb. I do not think it is for me. A compression sleeve does not sound like much fun either!
That is about all for today. Keep up your good work.
Love.
Sylvia xxxx
0 -
Hello Mary,
I shall not have time to write today about that short article in Focus magazine entitled How does radiation kill cancer if it causes cancer? by Odysseus Ray Lopez, US.
I hope your week is going well. So far mine has been too busy.
Love.
Sylvia xxxx
0 -
Hello adagio,
Thank you for your most interesting post. I have run out of time so I shall try to answer tomorrow. I was interested to know that you had been to see a lymphoedema therapist.
Love.
Sylvia xxxx
0 -
Hello adagio,
Thank you for your post. I have at last found some time to answer you.
I feel fine, but I am not looking forward to getting back into the NHS system. I find it all so slow and bureaucratic, and somewhat impersonal. There is no other way. I have to see my breast cancer consultant surgeon, have her look at my arm, and the refer me to the lymphoedema clinic. My arm wi;; get measured and then I have a three to four week wait to get a compression sleeve. Apparently compression sleeves and hand and arm bandaging are the only ways to get swelling down.
I was glad that I knew of a lymphoedema therapist practising privately and that I had some massaging and draining and access to a Hivamat machine. I had never heard of this. She does not have compression sleeves but she does this bandaging of the arm and it has to be repeated. It is all very expensive and not something I could do on a regular basis. She has given me lots of advice and tips on keeping the lymph moving through my own massage and exercises. I have been doing a lot of the opening and closing of the hands above the shoulders to assist in the lymph drainage. In another post I shall try to list the exercises that I am doing. Thrusting the arms out with clenched fists, as if boxing, is something else I have learned.
Apparently MLD is useful for lots of things. The massage is indeed very gentle and the arm does feel lighter for a while.
I am so relieved that my problem is in the lower part of the arm, from wrist to elbow joint, and the therapist told me this was much less serious than if I had lymphoedema in the upper arm to shoulder part.
There are lots of do's and don'ts. I think gardening so much has helped me a lot and the fact is that my upper arm is now less than 10% in circumference to my good arm. After finishing my cancer treatment in 2006 it was 20% more in circumference to my good arm. I think you have to keep your arms on the move, but with gardening you have to take care not to get cut or scratched and not to get bitten by anything.
I definitely think you should not lift heavy stuff and I think I may have strained my arm with a vacuum cleaner that was a bit too heavy.
I did know about not having injections in the surgery arm or having blood pressure taken.
I still think that the flu injection may have played a major role. I had not had one since before treatment in 2005. I think the rush of antibodies after the flu injection somehow sent my lymph system into overdrive.
I think it makes sense not to have injections in your bad arm and not to have blood pressure tests there. It just becomes automatic and does not prevent you leading a normal life. The same goes for gardening.
As for plane flights, I think it is probably prudent to wear compression sleeve or compression socks.
There is not much difference between the measurement on my good arm and those on the right affected arm. I measure the wrist, the middle between my wrist and elbow joint, and then the elbow joint. There is a bit of difference in these two parts but not much.
I do want to avoid any major scans and getting pulled back in the system. My GP said just to ask for an ultrasound on the arm, as a way of getting back in and then referred to the lymphoedema clinic. It sounds simple but is it?
That is about all for now. Keep in touch and I shall try to keep everyone supplied with information.
You might like to say hello to your fellow Canadian 53nancy from Manitoba.
Love.
Sylvia xxxx
0 -
Pam - I am curious to know if you had any lymph nodes removed during surgery for your mastectomy?
0 -
Hello
When I'm walking I do Nordic walking.
I send you a article
https://www.researchgate.net/publication/237066994...
When the lymphedema therapist made me my massage. She began in the finger a go up gentely and then take the linfa to the back or to the stomach. She said she is teaching the body to learn other ways to put the linfa.
Abrazos
Marias
0 -
Hello Marias,
Thank you for your post and the link. I shall try to look at it during the weekend.
I think there are probably all sorts of lymphatic massage but according to the private lymphoedema therapist that I saw for one consultation, the only real solution is bandaging or compression sleeve. I do not know how long lasting that is before the swelling comes back.
Massage gets the lymph moving and makes the arm feel much lighter, but it does not last.
I do hope you are feeling better. What is your next step?
Sending you sincere greetings.
Sylvia xxxx
0 -
Hello next 2.November at 2:00 pm I will have the surgery to take away my thyroid. Before the surgery I will take for 5.year letrozole for breast cancer. I don't know still wich one is the treatment for thyroid cancer
Today I really tired
I hope every one is getting better
Abrazos
MariA
0 -
Hello Everyone,
I am sorry for my absence on the thread, my sister had her double mastectomy last week, and is recovering well from the surgery. She also finished her carboplatin/taxol regimen which started in May and finished at the start of September. She got through the chemotherapy treatment well, she is mentally very strong and determined. She has both drains removed now and is just taking one day at a time recovering, and luckily has minimal symptoms from chemotherapy treatment. I just wanted to let you all know as everyone provided me with so much support since diagnosis. I will be reading to catch up on the tread, sending you ll lots of love xxx
0 -
Good morning. Things are moving here, and MAYBE a little differently than I had hope. ALl of my reports were clear until yesterday, and now it seems my Chest, Abdomen and Pelvic Scan is "mostly clear" except for "indeterminate foci in the T11 and L3/L4 areas of my spine". My nurse practitioner has no idea what that means. On Monday, I visit my oncology team for the first time, and I am hoping against hope that it is sonething to do with the osteoarthritis and not the start of bone metastasis. I had decided if everything was clear, to refuse chemo but do radiation. Now I don't know what to think and I know it's going to be a very long weekend.
0 -
Hello Everyone,
Sylvia, the yoga retreat was very useful for calming my nerves as my oncologist monitors my ca 15-3 levels. He wants to check them again in a month, though he agrees that they are unreliable. I also found a lump/node in my neck which he looked at yesterday. He referred me for a CT scan today, so here I sit, drinking iodine water, just like I did when I first got into my health system. I feel fine, except for the worry.
At the retreat we talked a lot about how calming that empty, historic house was. There was absolutely no clutter. We were able to have about 9 yoga mats on the floor of the living and dining room, with plenty of room to move.
My lymphedema risk was minimized by my oncologist and both radiologists that I saw. But they never seemed to give the same advice. What I took away was to make sure I didn't get blood pressure taken on my cancer side. Other than that, I just take common sense precautions that make sense to me.
I'm sorry to hear that your lymphedema drainage, (MLD) is privately done and expensive. The sleeve and bandaging part does not sound pleasant either. It's just so frustrating to think that you were getting what you should with the flu shot, and that is possibly the cause.
Adagio, yes I had either 1 or 2 nodes removed during my mastectomy. The surgeon told my husband one thing, but the report said another. It was minimal, and I never had the energy to get to the bottom of it.
Marias, I can certainly understand you feeling tired, after all you've been through. I wish you a very smooth surgery on 11/2.
53Nancy, I had a suspicious area on my liver during my initial rounds of scans that scared me silly. They decided that it was not of concern, and we moved on. This waiting and worrying is terrible. I'm in for a troubled weekend too.
Well that's enough typing with my thumbs, on my cell, without my bifocals. Wishing everyone a good day and some good outcomes.
With love and hope,
Pam
0 -
Hi Pam,
A few months ago I noticed a lump underneath my clavicle and I was also so worried about it. I did go and get it checked out with a scan and it turned out to be a synovial cyst - I was so relieved that it was not metastatic, that I didn't even bother to ask the doctor what and/or if anything should be done about it. It is underneath the bone and it does sometimes still bother me when I sleep on that side. I think it is a bit bigger than when I had the scan done, so next time I see my GP, I will enquire about possible treatment - although I did look on Dr Google and it said something like having to break the bone to get to it - so I can definitely live without that.
I know how easy it is to worry about every little bump, lump and ache or pain - it can be a very dark time when we get these issues since our mind automatically thinks metastasis. I suspect this will be our new normal.
Wishing only the best for you, and certainly every little thing is worth getting checked, although I am not a big fan of CT scans - more radiation that can be a possible cause of cancer. But the plus side is they can put our minds at ease.
Your yoga retreat sounds like something I would love to do - so glad that you got the opportunity - now it is time to put the principles into practice.
0 -
Marias - so sorry to hear all you have been through with additional ovary surgery and the inflammation of the breast tissue. I was surprized to read that you will be having more surgery to remove your thyroid so soon after the ovary removal - I would have thought that your body would need a bit more time to recover in between surgeries.
Have you been having thyroid issues? I looked back in your posts, but could not find any reference to that.
You must be very tired indeed - I hope that you can rest and get some help at home.
Please take care of yourself and keep us updated on your progress.
0 -
Maryna - just wondering how your appointment was with your oncologist on October 24th. I am hoping for only good news for you. You seem to have been very busy this past little while, which is good and bad. Good in that my little mantra is "better busy than bored" - bad in that we tend not to take as good care of ourselves when we are busy. But I get the sense that you will have found the balance in that regard. Let us know how things went for you.
0 -
Hello Marias,
I am writing in reply to your post of Thursday October 26th.
I was surprised to read that you are going to have your thyroid removed on Thursday November 2nd. It seems that you are having a lot of treatment and surgery and that you barely have time to recover from each one. You have just had your ovaries removed, before that you had all that radiotherapy and before that surgery for a lumpectomy and before that all that chemotherapy. I would have thought your body needed to recover from all of that before having surgery to remove your thyroid.
I did not realise that you had been diagnosed with cancer of the thyroid and that it was going to be completely removed. Have you been told what caused the cancer in the thyroid? Please get complete rest before next Thursday. Do you know how long you will be in hospital?
I would think that you would have to go on synthetic thyroxine straight after surgery to replace the natural thyroxine that comes from the thyroid and is necessary for the proper function of your body.
I do not know if you know that there are four very small glands that sit on your thyroid, called parathyroid glands? These are necessary for the proper control of calcium in the blood. What is going to happen to these if they are removed with the thyroid? Have you been told whether these parathyroid glands are also cancerous and will be removed with the thyroid.
If your parathyroid glands are fine, they can be placed elsewhere in the body.
I see that you will be taking the drug letrozole for five years to control the oestrogen positive receptor part of your tumour. This drug is an aromatase inhibitor used to control hormonal receptor positive breast cancer. You should ask your consultant what the side effects are.
I hope this information helps and that you now understand what your drugs are or will be.
We are all thinking of you. It is hard to believe what you have been through?
Please keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hello Kathy28A,
Thank you for your post.
I was glad to know that your sister is doing well and that she now has her chemotherapy and breast surgery behind her.
She now needs to give herself time to recover.
Is she going to have radiotherapy?
Fond thoughts.
Sylvia xxxx
0 -
Hello 53nancy,
Thank you for your post and for keeping us updated.
Reading through the details of your treatment so far, it seems a bit confusing. According to your details. You had a lumpectomy and one lymph node, the sentinel node, removed before you had a diagnosis of your receptor status and then later in August you have a diagnosis and then another diagnosis in October. They read the same except the October one adds stage 1A and 0/3 nodes. Can you explain what is going on?
What is the next stage of your treatment?
You say you will visit your oncology team for the first time on Monday October 30th. Is this to discuss chemotherapy treatment or the indeterminate foci found in your scan?
You must be going through a lot of anxiety as you wait for Monday.
Ask your oncology team to tell you in simple straightforward terms what is happening to you and what they are thinking about as far as treatment is concerned.
You are in control of your treatment and you are the one who will decide what you will have when you have all the information and when you feel you are a fully informed patient.
Fond thoughts.
Sylvia xxxx
0
