Hello, I am new to this however I was so moved by the letters. I am not new to the BC world, had ER PR BC 6 years ago, then this past April was having another lumpectonmy same breast same ER PR BC. I am not sure what is worse, always feeling like you have the BC in the back of your mind, or dealing with human beings who do not have a clue what hearing you have C feels like. I am convinced of one thing, it takes courage to continue and dedication to learn everything that is available to help, and it takes a real sense of the fact that we are valuable, we are wonderful and we deserve the best. There is no time for anything less. So God bless all of you. So now 8 months late I am having shooting pains, sorness and I wonder what the heck is going on now? I am seeing an doctor now who is going to start bio identical hormone progesterone to see if we can balnce out the estrogen. After what I learned about Tomoxifen, I felt lead to go this route. I am having enough issues that I want to avoid any further health issues cause by a medication. Has anyone tried this route?
Thanks everyone, very reassuring to hear your comments. Had lumpectomy end of September, and get occasional twinges and twangs in my breast especially the week after chemo; or if unwell-just getting over a chest infection which was not fun coinciding with 2 days after chemo.
How did people find the T half of chemo, as compared to FEC?
You're saying so many of the same things I've been saying, that somehow people have got the impression that breast cancer is no big deal, you have a bit of treatment and then it's all behind you and off you go. I don't know whether it's because more women have lumpectomies now, and that sounds like something quite small, they don't realise that it can still be quite major surgery. And as you say, you can continue to have pain from it long after all your friends have forgotten all about it. And the radiotherapy and chemotherapy, they have ongoing side effects. And then there are the hormone treatments, I don't think anyone on the outside realises that they have a lot of side effects, and you have no choice but to carry on taking them for years.
Like you, I've found that friends have been a bit varied, one just told me off for being negative when I said I worried about it coming back, another got the hump when I cancelled going over to her house for the day (60 miles away, and I gave her more than a week's notice) because I still wasn't feeling well after all the surgery. But other people I didn't know all that well have been wonderful, you do learn things about people when this happens to you. I have found coming on these boards brilliant in terms of finding people who get it, most people out there haven't a clue how we feel.
I was diagnosed in March had my lumpectomy and my lymph nodes removed in April 2016 , which were clear , and recently Iv been worried about the pain Iv been having , specially when I'm sleeping as I sleep on my front and the pain wakes me up , reading people's post that even at 18 months they still have pain ,kind of makes me at ease and worries me that it could last that long . And also reading how family and colleagues think because your treatment is over that your ok , and thinking because your walking around and even working that your ok , I'm fed up with people saying you look good and glad your ok , I won't to say to them well when you have had a doctor say those words you never thought you would hear you have cancer , and then have half your breast cut away , and a mixture of chemicals pumped into you body and bombarded with radiation and the pain you feel and the emotional feelings your going through , then and only then you will know how I feel , And know saying your ok so get over it is so far from ok to say .Iv also Hurd people say you find out who is your friends , and that is so true , I cannot belive a so called friend stopped talking to me because I cancel a holiday because I was recovering, and to this day blames me for reckoning her holiday . My advice to anyone with a negative person in there life while going through cancer get rid of them and look after yourself .
I have until recently only read other people's conversations but have been worrying a lot lately as my breast are so sore when I press them, I had bilateral mammaplasty in Jan and finished radiotherapy in May. Your comments have helped me so much I didn't realise I would feel sore for so long. Thank you Jeanette .
Hi Katm, your post saddens me and also makes me so angry on the other hand. How dare people tell you 'that you should just get on with it and that you were lucky' . You're allowed to feel how you feel. If they can't be supportive or don't know how to be, then they should keep those comments to themselves. 'Back to normal' they haven't got a clue. A diagnosis can affect you for a very long time and just because things may seem normal to others, it doesn't mean that it is in your world.
Also sorry to hear that your partner doesn't want to talk, you are welcome to talk to me
I was diagnosed two years ago and also had a lumpectomy, i still get pain (a temporary burning sensation).
Its only been 7months since had lumpectomy and lymph nodes removed. so pain wil still be there for while.
Roller coaster yes , its been that , I actually thought i went through it all quiet well.
Felt bit of a fake ..as wasnt unwell or anything..
But just recently , everything has got on top of me. Friends and family and at work ,they all think your back to normal.
Just get on with it , you were lucky , whats been said to me !
I didnt feel lucky when i was told i had Breast Cancer my first mammogram.
Now im emotional all time and dont sleep to good and to top all that stressed at work.... my partner doesnt even want to talk about it, he just says , go talk to your pal.
or get tablets.... I do not want to go down that road.
Omg!! Reading all the comments about pain and discomfort so long after surgery and treatment, is such a comfort to me as I thought it was just me, although I just had my annual mammogram and it come back normal I still have doubts, also people think all is ok now you've finished treatment and back to work, plus good friends now ignore me and family (mother-inlaw)that didn't want to see me whilst going through treatment and didn't contact me or my boyfriend during our 'rollercoaster journey' now wonders why we don't join them for family events now, anyone would think I had a contagious cold/virus not cancer. Thank god I have amazing friends x
Thanks somuch Pat for replying. I have my annual ms appointment Monday so will bring it up then. I think that my mind has been racing with WHAT IF'ssince the journey began. I amsure all will settle soon. Take care and keep well. xxx
Nice to hear from you Lesley and Mary.
Lesley, I'm doing ok on Anastrozole (touch wood!). I'm having some hot flushes but not too bad. No pain in joints yet but I do take 75 mg of Amitriptyline daily for MS pain so I think I might have managed to kill two birds with one stone! Hope it continues like this!
My fatigue is through the ceiling! Was bad enough living with MS fatigue but it's even worse now. I'm not sure if it's the Anastrozole or my MS reacting to it. On the up side, at least I'm used to fatigue and my life is arranged to deal with it...have meals delivered, have a cleaner etc etc.
For the first few weeks I had terrible trouble getting to sleep but it's better now. Just the occasional night. I take the pill in morning.
Mary, can you ask someone about your back? The rads nurse maybe for the BC nurse? It might be related...hard to say. It might be because you are so tired. When I'm very tired I tend to get lower back pain.
Kelly, hope the pain is improving or at least that you are reassured and not worrying about it. I wonder if massaging the breast would help, esp if there's liquid it there. Might help to disperse it. There's more to this BC lark than it says on the packet!!!
Wishing you all well.
Hello Pat, just noticed you were on giving valuable advice as ever.
Well Rads over 3 weeks ago and it all went well although its the weirdest thing but I feel tired and wobbly more this week. The nurse at the hospital said to expect this as did my gp.
I am very consciousof every wee ache and pain and my mind then works overtime, hopefully that will settle in time.
I have the neurologist on Monday for my normal ms appointment so it will be interesting to see what they will say as I had my first relapse in June.
It has been a crazy dark summer but hopefully all will be fine. Thanks for all help/advice. Mary
Hello Pat, lovely to hear from you. As usual, reassuring words from you. Yes, wearing a bra "supports" and helps the aching but I do whip it off as soon as I get indoors as nipple is still peeling and sensitive, between a rock and a hard place, what's best? Like everything on this BC journey you just have to go along with it.
how are you doing with Anastrozole? I'm coming to the end of a 6 week break as I was feeling so awful due to lack of sleep (flushes/sweating) which haven't improved, so guess it's menopausal not all down to the drug, though now off it I find I manage to drop off between flushes whereas on it once they started I was wide awake all night.
Hope ms is stable and you're keeping well xx
Hi all, and to Lesley...we were on July rads together.
I had lumpectomy on May 20th and still getting pain esp sharp stabs of pain behind the nipple. Saw surgeon a couple of weeks ago and he said it's perfectly normal. Can last a year or two or longer!
I was very worried it was another cancer forming but examined me and reassured me it's all ok. Still some swollen tissue from rads. Not nice to have the pain but is nice to know it's normal. Also I find wearing a bra helps.
All the best,
Reading all your posts has reassured me no end. I had my op beginning of June this year and rads July/August and was getting very anxious because I'm still getting sharp stabbing pains in breast and pains/aches in breast bone and ribs. The mind starts working overtime especially in the early hours when laying awake unable to sleep even though I'm exhausted. My skin has still not recovered from rads.
This is whole thing is awful and seems never ending, and I'm sure I'm not alone in that friends and family think that now treatment (other than hormone drug) is finished its all over and expect you to carry on physically and mentally the same as before, almost like you've had a cold but it gone now so forget it.
Wishing you all a good weekend xx
Julie I'm guessing you would have had Radiotheraphy , this is what makes you so tender, I finished mine in June last year and I can't put much pressure on my boob still, I was told it may always be like it so I don't worry Xx Jo
Myofascial releases with certified lymphedema therapist will help. I treat this regularly at Vanderbilt in Tennessee
Go to a physical therapist that treats with myofascial release. Takes 6-12 sessions at 1x a week
Hello My surgery was about 4 months ago and lymph node had a splinter in first node, so early days I know but having lots of pain, there was an infection which a course of anti-biotics did the trick., it is where the scarring is under arm and nipple area.
so I feel for you if 18 months down the line you are still sufferring 😞 I suppose it all has to mend and knit back together. I find sleeping a problem at the moment as i sleep on my side, and the emotional side also keeps me awake also, so it is nice to chat to like minded people.
all the best Elaine
Please feel free to call our helpliners to talk your queries over as they may be able to offer some ideas or know of other people who have been affected in a similar way, the lines are open 9-5 weekdays and 10-2 Saturday on 0808 800 6000 and they are here to support you