Hi Ladies.
Lynne, Ive just had a read through that link you gave. Found quite interesting, I must say the phrase they use ‘What you think you know becomes useless and what you need to learn seems hard’ (it read something like that) Sums up alot in my opinion.
After alot of soul searching, thought, tears, even laughter on some occasions since my first visit to the breast clinic. I think ive decided it didn’t matter what type, size, etc of Breast cancer I had i think i would still feel the same. What im trying to say, is Accepting what has happened is where i have my difficulties. I did as was reccomended at the time by my consultant without consideration, i just wanted to ‘get better’ for my husband, kids, my mum and dad. I trust my consultant, i believe she has my best interests at heart. MX was neccessary, so it was done, but the impact of losing one of my breasts mentally has been the worst illness of all and hit me very hard post op. I delayed my reconstruction at the time of MX because, at the time they was a high risk of invasive cancer been found within the breast. But i was ‘lucky’ i hate that word now, who using this forum is lucky? I don’t feel lucky. A woman who though she was helping, comforting me at a breast cancer support group, said to me ‘im so glad you haven’t had to have chemo… it is so terrible to have to have chemo…you are so lucky…’ She had had an invasive lump removed and chemo and was a number of years post treatment. I was so upset by her comment, i didn’t say anything at the time, i know she meant well and wasn’t wanting to offend me, but if i’d have replied with…well im so glad you haven’t had to lose your breast, because that is pretty awfull too! would i have been wrong?
I am going to have reconstructive surgery, i feel i need to, to be able to feel ‘normal’ again.
There is a definate feeling of ‘lost’ ‘in limbo’ just as LynneX describes. Treatment and care seems to differ place to place. I didn’t meet my ONC they made the decision no further treatment at a meeting and my BCN delivered the news. My BCN has been my main source of info she refered me to a health psychologist to help me work through everything and accept was has happened. I had my first meeting yesterday which was very tearful and honest. So although im am very sad at times, there is determination somewhere in there to get better.
Ive just read back what i have typed, and im sorry if ive upset anyone as that is it not my intention, i just wanted to share my feelings.
Jo,
I have just read your posting and I could have written it myself. apparently im also a “lucky” one who is walking around with her own hair but with one boob! not sure how they come to that conculsion!!
I have had partial recon but for some reason my body rejects implants (have tried 3 times!) so im now left with a “lump” of muscle that is supposed to resemble a breast!!
I accepted the physical side ofhaving surgeries but now its all settled down i cant seem to get my head round it mentally. I feel less of a woman, I feel grotesque when i take my clothes off and i DEFINATELY dont feel sexy! Its a year on friday since diagnosis so im hoping that with time and if i get the implant successfully put back in then i will start to accept what has happenend. I still worry that I havent had chemo and rads and that its not all been taken away and that some cells must be stuck on my chest wall but at some stage I will have to accept that my life is continuing and learn to enjoy it with or without boobs and worry!
Jo and Deed ,How strange that we are living tandem lives! You described how I am feeling to a tee.
I also didn’t want to upset anyone with my feelings and I just read mine back and saw I used the lucky ‘word’ twice.
I think I have had some brain cells removed as well as my breast.
I have had double physio this afternoon for my knee (I forgot to mention I had a MPFL ligament reconstruction on my knee last May, so 2 surgeries in 1 year and 5 months off work!) and my arm as I had some cording. My Physio gave me a scar and armpit massage (wierd but nice) and we had a nice chat. It’s good to talk and I left feeling in a much better mood. The sun was shining, I drove past a bank of crocus and got my hair cut on the way home!
XX
It doesn’t really matter whether other people see you as lucky or not, it is how you feel. We never get anywhere comparing to others; there is always someone worse off and better off. If someone upsets you, then allow yourself to be upset - it is a positive thing to feel. The absolute worse thing is to go on and beat yourself up about it as adding guilt just layers on the burden.
‘Count your blessings’ is so very British (and of my parents’ generation) and it helps if you can get there yourself, but definitely NOT if someone imposes it on you.
Anyone with BC/DCIS is not lucky. ‘Statistically’ they might be but we are human not numbers. And it is the worry about the future too, that is the terrible thing about this disease. It doesn’t get ‘cured’.
Hi
Thank you for all your replies, it is reassuring and comforting in a strange kinda way that i/we are not alone in our feelings, if you know what i mean.
Deed, i don’t really know much about recon methods so i can’t imagine what it must be like for you at the moment other than 3 steps forward then your body rejected the implant so you go 2 steps back, tell me if im wrong? Its good to hear your still determined to continue with the reconstruction. I worry also that ‘it’ hasn’t gone and ‘it’ started somewhere so it will just start again in the chest wall or my left breast. I was dx in Nov and had my right MX in Dec and by 23rd Dec was being told i didn’t need to be seen again until June this year, it was all so quick.
Clumsymoo, you didn’t upset me so don’t be worring there. I don’t know about brain cells but im really forgetfull now, i can have a conversation with someone and totally forget about whatever we discussed or agreed within hours. I switch off when people are talking around me, i hear their words but its just white noise, i glazed over, i am nowhere, im not thinking or daydreaming my mind is blank. Your Physio sound great, ive considered going for a massage or something nice and relaxing, ive thought it my help me relax. But thats as far as ive got, not sure i have the courage or the energy to explain myself again when booking it. Do you think i could have one without explaining my scars? is it medically advisable? The sun was shining here too today…hard to believe we was knee deep in snow 8weeks ago.
Annie, your words are very true and i know ive said it to others if we allow ourself to have a bad day or a few tears etc. we are more likely to smile the next, if you know what i mean. Thank you.
Jo Jo (my sisters name also, how strange!)
I only had the massage because I was sent to the physio because of the cording in my arm and I agree it would be great to have a proper massage. I am sure that I was told of a drop in centre at Mount vernon Hospital( I don’t know where you live, I’m in Ruislip area , outer London)which did such things for BC patients which would negate the need for explanation, which would I agree be cringeworthy. Maybe you have a similar group near you.
We have so many aches after such a big op, mine mainly just from trying to sleep in a different position as I have always slept on my MX side.
I wonder if Macmillan or the BC Nurses on here could answer your questions about if it’s safe to go for a massage. My sis wanted to book us in to Clarins for one.
Good Luck
XX
Jo your right, it definately feels like one step forward and 3 back!! but im not happy with what ive been left with so will definately keep plugging away until i feel that i have something that resembles a breast!
I was told that once the cancer was removed then i could have a proper massage. When i booked it and explained that i had had cancer they needed a doctors note and he was more than happy to provide one. I think it was a well earned and needed massage!!! treat yourself!!
all the best girls!
Hi Ladies,
Ive had a good couple of days. On Wed i went on a Look Good Feel Better afternoon. Which was wonderful, i don’t know if any of you ladies have been on one? but look in to it with your BCN if you can, it was a real boost to my confidence and image, without even tackling the one breast issue. You are all issued with a lovely toiletries bag depending on skin tone with contains loads of beauty products, and i aint talking samples, full size products, i couldn’t believe it! i come home armed with the confidence to apply makeup again and take care with my skin again. Never mind the DCIS and MX, just becoming a mum has seen me negalect this area of my life over the last couple of years. So today i got up,(an hour earlier!! lol) and went through all the clensing, toning, moisturising and make up and went bra shopping, with Bertha (my name for the prosthesis)and my mum. I saw the lovely lady in M&S, she did as promised over the phone and sorted me out. I got two bra’s to start me off and see how i go. I even found myself saying YES when Tracey, the M&S lady asked if her collegue who was training to fit MX ladies could come and see my scar too. She thought is was one of the neatest, well healed, 8week old MX she’d seen in her 10 years experience. The most werid compliment i think with hindsight ive ever recieved?!?! I can’t believe i allowed the other lady to look, it was quite empowering, a bit of a Gok Wan moment me thinks. Then had a lovely pub lunch with my mum. All in all and great couple of days. At this rate i have the courage for a massage in no time. I do hope you are all having a good couple of days.
great to hear you have had a good couple of days Jo. I def think you should go for the massage - you will feel very proud of yourself when youve done it, I know i did!
I have a HUGE scar on my back from my ld flap and yesterday i saw a chiroprator for the first time. she started to manipulate me and she said “you really should get fitted for a bra cause you seem to have a long red line from the strap!” she looked mortified when i told her it was from cancer!!! think she is probably hoping i dont return!! lol
hope your all doing well, ive just got in from work at stupid oclock so going to FINALLY get to bed!!!
Things seem to be quiet on this topic at the moment, is there any one new out there who has just been dia with DCIS non invasive BC. It would be good to hear what your route of treatment has been and if you have been offered any back up treatment. I would also like to hear from somone who has been treated for DCIS and is still clear of BC in the other breast, I have been reading up on DCIS and some ladies decide to have a MX on the other breast has any one made this decision? Also has anyone tried the new Amoena Energy brast form, I play a lot of sport and wondered if it would be worth trying.
I had a mx in Oct 2008 because DCIS was found on my first routine mammogram. When I got my results I was told that they had found a 10mm grade 2 tumour developing but this was far enough from my chest wall to be successfully removed. My lymph nodes were clear. I didn’t have radiotherapy but I was given Tamoxifen. This was to give me some protection from getting bc in the other breast because my bc was oestrogen receptive.
I took the Tamoxifen for 6 months and I had horrendous side effects and my consultant said it wasn’t worth me having the bad side effects for the protection the Tamoxifen was giving me so he told me to come off them.
I was worried about getting bc in the other breast (particularly in light of me not being able to tolerate hormone therapy) so at my last annual check up I asked about having another mx. The consultant said my risk of getting bc in the other breast wasn’t high enough to warrant another mx. As for the Tamoxifen, he said we would cross that bridge if and when we came to it.
I’m new on this site and have read all the comments which worry us all. Like you Cathie, I had mastectomy last October, a complete shock as had no warning signs just a crease in my left breast - no lumps etc. despite having all the regular mamms and checking for lumps. I was diagnosed with two tumours Grade 2 invasive adenocarcinoma, vascular invasion postive with 80mm of DICS. Lymph nodes clear. I had DEIP Flap and reconstruction straight away - felt like nothing on earth when I woke up but my consultants and nurses were very caring and reasuring. I also had further surgery for nipple recon four weeks ago and doing well. When I first saw the Oncologist I had to have more blood, CT and bone scans plus an Oncotype DX assay as they thought the cancer had travelled. Tissue was sent to USA as dont have the equipment/facilities to do it here and this determines the individual treatment for my cancer. The overall out look was that I didn’t need chemo as it was not considered beneficial and I’m now on a five year treatment of Arimidex. I too thought cancer = chemo. I have to see the Oncol for quarterly appts for two years, and the Breast surgeon for 6 monthly checkups for the next 5 years. Like everyone else I seem to think about this constantly I just wish I could get it out of my head for a single moment. It drives me bonkers at times! As well as being half scared out of my wits about it all. The Test that was carried out in the US gave an 11% risk of the cancer returning but taking the Arimidex it’s brought the risk factor down to 3/4%. I’m fortunate that I have amazing friends that have been there for me, but there are times when I feel so totally alone. My husband has not been the most supportive in the world and thinks that as I’m up and about all is back to normal, it’s been cut out so get on with your life, not so simple is it?
The Arimidex does have side effects, night/day sweats, joint pain, weepiness, muscle pain but I’m trying to get on with things - you dont have a lot of choice really. The BCN’s are good and the one that I speak to in particular is really helpful.
Hello all… after posting last week under “Have I got breast cancer?” because I wasn’t certain which section to post in, I found this section after browsing the site again. I had a WLE and SNB 3 weeks ago,margins and nodes were clear so no further treatment apart from tamoxifen and checkups every 6 months.This worried me as I felt that radiotherapy would be a kind of “insurance” and had been discussed before the op. My family have been fantastic but I did not want to worry them with my worries. However, after knowing it’s not just me, I feel much more reassured. Thankyou.
Hi all,
I have been diagnosed with Intermediate DCIS after rather difficult biopsies. I will be having my treatment in the next 2 weeks but I am a bit confused as to why some people have RT and some don’t. I seem to have a large area of DCIS 5cm, and calcification all over breast and one area that they didn’t manage to biopsy. MX was offered as best treatment with immediate recon. The BS was very very confident that the SNodes would be clear and I wouldn’t need RT. I am 46. When do they tell you to have it and when not? A few of you have said “becaue of my age”- I thought the younger you were the more likely you would be encouraged to have RT.
captaininvincible, In answer to you;re question, I was offered the option of wle plus rads or mastectomy without rads. Same as you ,large area DCIS although for me ,high grade.I’m guessing that for your situation the mastectomy had reduced your risk of recurrance to the extent that rads was deemed over treatment.
Hope that helps
(by the way ,I chose wle plus rads)
Andrea
sometimes having a few small areas scattered throughout the breast would mean a mastectomy was better than a a few lumpectomies… or if they were to take such a large lumpectomy they would have a very poor cosmetic effect… this means that for somebody with a small bust a smaller area of DCIS could cause such a poor effect whereas if you have a larger bust the same size of area may be taken with a lumpectomy without causing too much loss of volume of the breast… or that the breast are big enough that they could do a reduction on the other side to match it up.
radiotherapy is rare after Mx for invasive cancer and pretty unheard of after an MX for DCIS.
we have had some ladies request MX over WLE as the travelling to the XRT centre is so far this means they wont require to attend every day for 4 weeks… however i to put it into perspective it is usually only for around 4 weeks out teh rest of your life… but everybody is very individual making these decisions.
Hi,
I was also diagnosed as DCIS and had mastectomy in last April. I also didnt get any other treatment other then tamoxifen. I am very confused that they didnt offer radiotheraphyt to me. I read yesterday from American breast cancer organisation website that women with DCIS are better to have mastectemy and radiotheraphy, if they do, they have better chance of not recccourence.
I will send the link to you later on.
I am under the royal marsden which is a cancer specialist hospital. I have DCIS and 3 invasive tumours. They have said if I have another lumpectomy I will need rads, but there is a chance if I have the mastectomy that I wont need them. The Marsden is a centre of excellence so I am happy to be guided by them.
the effect of mastectomy is equal to the effect of wle and radiotherapy… the chance of getting it again in the other side is higher than with somebody who has never had cancer but not as high a risk as somebody who had invasive cancer… and the risk of a contra-lateral invasive cancer is under 10%
they only give radiotherapy following mastectomy if the cancer is near the surface or if they dont get clear margins its not done as standard procedure here and it could be that it isnt standard procedure in the US either but perhaps the women who had rads too had DCIS in the margins…
if its american its likely they will give rads too… health systems where you pay seem to order much more tests, treatments and investigations because its a money making business rather than a health business.
i have done a search for research on mastectomy plus radiation for DCIS and all the research even the stuff for close margins still states rads not neccessary…
“Total mastectomy with clear margins in DCIS is curative, and radiation therapy is not recommended” from the section entitle surgery for in-situ malignancy… in this article… annonc.oxfordjournals.org/content/21/suppl_5/v9.full