Hi Everyone, I have just been diagnosed yesterday with my thirs Primary Breast Cancer. I had my first BC aged 38 in 2002 and had 6 x AC chemo, lumpectomy with auxillary clearance and 30 sessions of radio on my right breast. I was then diagnosed with a second BC in Jan 2007, in my left Breast again aggressive grade 3 and had lumpectomy, auxillary clearance and 30 x radiotherapy. This was Triple Negative and I was then tested and am BRCA1. I then had a Propylectic Ompectomy in 2009. I was diagnoes yesterday with another BC in my right breast - so far the only results are that it’s Grade 3 aggresive and I have this time, been advised to have a double Mastectomy. So, it’s back to the drawing board for me again. Has anyone else on here been diagnosed for a third time.
Hi
I am sorry to hear your news I am just going through treatment for 2nd dx both Triple Negative Grade 3 one in each side this time in right breast last one in 2011 . I have had WLE on both sides with rads and had chemo first time am seeing onc on Monday re what am having this time. I am to have the gene testing to see if I have faulty gene hopefully to stop getting it for a 3rd time.
I spoke to my surgeon yesterday who told me if I was BRACA faulty he wouldn’t necessarily do bilateral mx as I have already had it twice I may mention to him that obviously you can get it again!!!
I think most people who have faulty gene have bilateral mx so not many who do get it for a 3rd time, Although I know Lulu 34 has been through it 3 times she has BRACA2 fault.
Good luck with your treatment
Jill
Hi Jill, Thank you for your response. Yes, I was under the genetics team in the Royal Marsden and she said there is little reserch into third or fourth BC as most have had Mastectomys. Although, I was told on both occassiosn that reserch showed that Lumpectomy, chemo and radio was just as effective as Mastectomy. They also said that having the Oompectomy and now my age of 50 wuld signiflicantly reduce any chance of a third and they thought I was now relativly low risk. My Surgeon said yesterday that he believes I woudl be at risk of a fourth if I dont have Double Mastectomy.
Yes Jill, do make sure you tell him that you are at a risk of athird BC and if you feel a Mastectomy is what you want - insist! I asked on my first diagnosis if I should have a double Mastectomy at that stag aand they advised me not too.
Good Luck to you also on teh rest of your treatment B x
Hi Bernadetteh,
I just wanted to say hello and how sorry I am to hear of your 3rd diagnosis. I hope you are doing okay.
Like you have a brca1 muation. I have breast cancer twice- both times triple negative, grade 3, lymph node involvement. Chemo both times. Like you was under the Marsden for genetics. When I had my first breast cancer (had brca daignosis between 1st and 2nd cancers), they said there was limited research on 2nd breast cancers but as you say, suggested oopherectomy (which I had this year) to reduce risk. But, my breast surgeon was convinced risks were very high and it was his concern which led to my decision to have bilateral mastecomies and it was only this surgery which found the 2nd tumour. I found it really hard when my doctors did not agree and its so hard when you have to figure out what you want to do and weigh up risks.
It sounds like right now the priority will be treating the cancer.
As a matter of personal interest, are they calling it a new primary, or a recurrence- with me they were never clear as the 2nd tumour was occult?
Good luck and stay in touch.
Rattles
hi bernadette
what a bummer!
as Jill said i have had BC 3 times… first was hormone positive in 2006 at 37 in right and had WLE, rads and tamoxifen. then 3 years later i had TNBC in the left and asked for a double mx but like you was advised against it. i had WLE, chemo and rads.
i found out after this i was a BRCA 2 carrier and had a hysterectomy and oophorectomy
then 2 years later i was diagnosed with TNBC again but it was above my breast in my left chest lymph nodes and asked for a double mx again but was advised to wait until treatment was over as i would heal quicker after WLE… so thats what i had and an ANC, followed by more chemo and more rads.
i never actually got around to the double mx but i know my risk of another cancer or recurrence is high, but have been reassured that the rads are protective meantime… although PS and onc are keen for me to have risk reducing surgery at some point in the future. iv got my annual MRI on friday (last diagnosis was at annual MRI 2 years ago, so have my fingers crossed).
its annoying cos like you cancer no3 was after i had my ovaries out and that is meant to reduce the risk of BC by 50%.
anyway if theres anything i can do to help please let me know… having it twice is pretty unusual, but 3 times is very special… lets hope theres no number 4 for either of us… and no number 3 for jill and rattles.
Love Lulu x
Hi Rattles,
Thank you for your response. I was out all day yesterday having Bone and CT scans, so first chance to reply. My second cancer they called it a second primary. So far I don’t know if they are calling this one another primary or a recurrance; although it is in a completly different area of the breast. I also dont knwo if this cancer is Triple Negative, as I’m aware that can also change. I suppose they will have more info on next visits. I have decided to have reconstruction at the same time as Mastectomy, as to be honest I can’t bear to recover form surgery and chemo and then to face another surgery. My Breast Cancer Surgeon told me on Friday that if I don’t have a Mastectomy that I am at risk of a fourth BC - due to the BRCA gene.
I hope you are keeping well Rattles and thank you again for your response, which I really appreciate xx
Hi Lulu,
Once again, thank you also for your response - which is appreciated!
I believe my first BC was HER2 positive, although they weren’t offering Herception at that time. As, when I was diagnosed for teh second times my Onc was going to prescribe HER2 for me - judging form the first diagnosis, but when they checked they found the second cancer was Tripel Negative, therfore was unabel to have any Hormone Treatment. I was also reassured that the 30 x sessiosn or Radio on each breast, which is the maximun does was protective!
I also have MRI’s but I found the third cancer myself, I have discovered them all myself and then gone to have them confirmed. The first two were palpable lumps. This one was completly different. I was getting a sharp pain in my Nipple and an inverted nipple which, I ahve never had before. i rung the the BC Nurse and got an appoitment and my BC surgeon checked and thought there was no concerns, but sent me for Mammogramme and Ultersound that day. It wasn’t particilarly oious on the Mammogramme, but it showed increased density. The Ultersound showed the area and they did 5 Biopsies there and then.
As you say Lulu - “what a bummer”
I was hoping Cancer was on the back burner for now, as I had got to 6 years this time! It’s a sneakly little bugger!!!
Yes definatly we will not be having a fouth time and no third for Jill and Rattles - I hope you’re keeping well Best wishes B xxx
bernadette when the cancer is in the opposite breast it is nearly always a new primary, however in the same breast or surrounding area its often considered a recurrence, even if its not in the exact same place… although some units will call everything over 5 years a new primary and under 5 years a loco-regional recurrence… some it will depend on the features of both cancers… however having a BRCA1 gene makes it much more likely that even if you had 5 new primaries all but 1 would be TNBC.
good luck with your treatment
Lulu xxx
Someone sent me a very thoughful private message that was in my in box yesterday. Unfortunatly, I never got a chance to respond and the message has now disapered and I don’t wnat whoever sent to to think I’m being rude and ignoring the. Thank you to whoever sent it and sorry I cant respond! B :mansad:
Hi B
Glad? you have had your op and are recovering but swelling not good!!! I hope they get it sorted soon and you can get on with the rest of your treatment although chemo is nothing to look forward to! I am doing ok have 3rd chemo today so will be halfway through YAAAY!! Coping ok after first one. Lulu hope you get on the trial and it is your wonder cure enjoy your week away first though.
Best wishes to all of us!!!
Jill xxxx
Yes, this is my third time as well, first time in 01: right radial mastectomy, again in 05: returned in right chest wall and now it’s under the left breast on the bone. But I know God is good, we as humans have our valleys,
but God is always there! So the only way to survive this is keep a sense of humor, try not to stress(I walk/exercise everyday, PRAY(need I say more),keep your family/friends close and a GOOD support group always helps! Remember: it’s not over, until God says it’s over!
I have - sort of.
The first time was when I was 38. Invasive DCIS. I had a lumpectomy and radiation, no lymph node involvement, but they removed them anyway. Next, when I was 47. I had a mastectomy. Next 54. I had surgery to remove the tumor that was in the skin and chest wall.
Unfortunately, I have no idea what comparable “stage” I am. The Oncologist tells me that the cancer will always be stage 1 because of the original diagnosis. There will be no stage 2 or 3. I can only go to stage 4.
This is very frustrating. I have to believe that the over 2CM tumor that has recurred twice and had moved “grossly” to the skin and chest wall has to have a poor prognosis than my orginal stage 1 cancer.
When I ask my Oncologist what the 5 and 10 year prognosis is, he says “I can’t answer that”. I understand that they have to be careful - If he gives me 5 years, what happens if I have travelled the world with my savings account and I am still here? But still, I have a bucket list, and I would like to know the statistics.
Any advise out there?
Hi Cafe and welcome to the BCC forums
Along with the support you will find here our helpliners are on hand weekdays 9-5 and Saturdays 10-2 on 0808 800 6000 (re opens 7.4.15 after BH) so please feel free to call to talk things through with one of our team
Here’s a link to further support ideas from BCC which you may find helpful :
breastcancercare.org.uk/breast-cancer-services
Take care
Lucy BCC
Have had breast cancer twice and think I might have it again. I’m due to go to the clinic on Thursday but am quite scared as the doctor has felt a lump below the nipple in the same breast. Have had a lumpectomy and node removal (16) first time and recurrence was in the nodes underarm where they took from before and had (6) removed of which 3 were cancerous. Have had two lots of chemo and rads over a period of seven years. The trouble is this time it is very painful and I am dreading the examinations and test on Thursday as I can’t even put a bra on because of the pain! I would appreciate any comments and help.
Ginny,just wishing you good luck and hoping your are third time lucky .Jill.0
That’s good news Ginny,scary that we carry on cooking ,my boob is still redhot almost 6 months after finishing radiotherapy .
Hi Ginny. I don’t want to scare you, but do please keep an eye on the swelling and push for a biopsy if it changes shape, size or the pain persists. It is possible to have other cancers in the breast that might be missed by scans, examination and mammos - it happened to me. I accepted the ‘take painkillers’ and ‘it’s not cancer’ assurance and now I have lost a breast, most of my pec muscle and am undergoing 33 rads to try and prevent a recurrence of a soft tissue sarcoma. My cancer is a primary angiosarcoma which is incredibly rare, but radiation induced angiosarcoma, whilst also rare, can be overlooked by a breast clinic focused on detecting breast cancers. If you are still concerned in a couple of months please push for a biopsy which will give a definitive answer. Tat xx