Hi to everyone
I have stage 3 IBC which is hormone receptive. Currently on chemo, then mastectomy and all underarm lymph nodes being removed followed by Radiotherapy and Tamoxifen.
I would be really interested to hear if anyone has gone for a second opinion and if so how they went about it and whether they thought it was worthwhile.
I have been thinking about it, mainly from a peace of mind point of view.
Hello Ratsypan
Welcome to the forums. You have come to the right place for support as many of the users of this site have a wealth of experience between them.
While you are waiting for replies may I suggest that you give our free helpline a ring on 0808 800 6000 and have a confidential chat with one of the breast care nurses who are here to support you. Yhe lines are open to Monday to Friday 9.00 – 5.00 and Saturday 9.00 – 2.00.
With best wishes
June, moderator
Hi Ratsypan - sorry that you have had to join us - but welcome…
I was diagnosed in May 2008 so a way down the road now… the treatment you are going to recieve is exactly the same that the rest of us have had and is the current worldwide recommended way for treating IBC… A few of the girls on here have gone for second opinons - normally at the Royal Marsden - but I think most of them have had further spread to stage 4… You should be able to go to your gp and say you want a second opinion and people have said that causes no problems…
I was the first person at my unit with IBC in 4 years and must admit there were times when I did wonder - do they know what they are doing? But I looked up current research papers at the time and my treatment matched exactly what was being suggested as the best course of action…
Do keep posting - we are a small group but very supportive and will try to answer any questions you have etc…
Theresa x
Hi Ratsypan
One of the first things my onc told me was that if I wanted a second opinion she would be happy to refer me to her mentor at the RM. All consultants should be willing to do this, and you shouldn’t feel embarrassed asking. I didn’t do it in the end, but my husband did talk to a contact at the Mayo in the US and some family medics. The problem is we asked 3 people and got 3 different answers!
Hi Theresa and Flinty
Thanks so much for your replies…it has put my mind at ease that I am having the best treatment I can. I think that I am looking for peace of mind that I have looked into everything possible.
This is a great forum…very positive and it is so helpful to have contact with people in the same situation.
Rachel
x
Hi Rachel - what chemo are you having? I had 4 x ac and then 4 x taxotare (some units call it by its other name docetaxol…) To give you some encouragement my tumour was 5.5cm when i was diagnosed and by the time of the op all they could find was one 2.1cm x 2mm strand - so more like a piece of cotton… and even on that most of the cells were dead or dying… also I only had dead cancer cells in one lymph node…
Theresa x
Hi Rachel
Sorry you find yourself here, but if it is any consolation to you, I underwent all my treatment in 2008 (with Theresa) and am pleased to say that at the moment all seems well.
I had 6 rounds of taxotere after a diagnosis of a tumour 8 cm +, but by the time of my operation it had shrunk to about 2.5 cms, then a mastectomy with full node clearance followed by 25 sessions of radiotherapy. I was HER2+ so not on hormones, and finished my Herceptin almost a year ago. I consider myself very lucky, with no node invasion.
I live in France so was concerned initially that my treatment was different to others, but found through support on this forum that it is very much worldwide to have chemo to shrink the tumour then mx, rads.
I hope your treatment is kind to you, it is tough at times but you’ll get there.
Good luck
Carole
Hi Ratsypan
I was diagnosed in Feb 2008, so am more than two years out now. I had a grade 3, stage 3 tumour measuring 15cm by the time I started treatment
I had FEC which failed, but the tumour started to shrink when I had Tax with Herceptin. I then had a Mx and rads.
My treatment was at my local centre, but I had a second opinion from the Prof at the Marsden. He made slight adjustments to my treatment regimen which may have made all the difference.
I’d say a second opinion can only be a good thing.
Hope your treatment is kind to you, Rx
HI Ratsypan
I was diagnosed August 2009 with IBC very few in my area had this previously and I did go for a second opinion at RM and a third with a more local surgeon rather than an onc. The person holding the knife was important to me. The RM adjusted my pre chemo mx treatment to 6 x fec not 4 which the surgeon I choose was also happier with.
Full MX and lymph clearance Jan 2010. Pathology found 11 of 13 nodes cancerous so have been on raditaion and furher 6 x dostaxol since for reassurance.
Its been a long and difficult year which I am finishing in a few weeks time having decided my body has had enough at 5 not the 6 treatments - I have had every side effect going but its just a case of getting on with it - I hope I have bought myself lots of time which is the positive way I have approached this.
I am totally worn out and glowing with toxins so its now a new battle to get fit again. I look forward to a new load of hair, eye lashes and return of the numbness if possible from my hands and feet. I had seroma’s drained twice and lymphadema as an additional headache.
I find I had pleanty of time with a good onc to talk in between every treatment so one day at a time is OK - I should now go onto a trial called REACT and Arimidex.
Good luck for your treatment everyone is different it just helps to be prepared and know that a reaction is not uncommon and someone else probably had it too, whats more their is a medicine for most side effects so dont bear the pain needlessly.
My tip was drink gallons of plain tepid water before chemo and after and again after all treatments.
LOve Dee Dee XX
Hi Ratsypan
I was diagnosed with IBC in March 2007 Stage 3 Grade 3, two lumps the largest was 8 cms, I had chemo followed by mastectomy and full lymph clearance on left side and 15 rads. The margins were clear but I suspect only just with hindsight and memory of my surgeons post op summary. In March 2009 a small quarter of a centimetre lump on the mastectomy scar which I found myself was diagnosed as a ‘local recurrance’. I had that removed and my meds were changed from Tamoxifen to Letrozole following tests which confirmed my ovaries were no longer functioning, a good thing as the tumour was oestrogen receptive.
18 months on, I am well and have just come through another appointment with the OK. I have all sorts of aches and pains keep busy with working 34 hours per week in a demanding job with 40 staff. Also I am really proud to say I organised a charity ball for 205 guests for local breast cancer charity and raised over £10,000.
Don’t worry, further troubles don’t mean that all is lost, we can bat on regardless, I wish you all the best.
Maria x
Hi Rachel,
I would echo what the others have said. Your treatment is pretty standard worlwide for IBC. I didn’t ask for a 2nd opinion but I have a friend in the field of bc research living in America who asked specialists there and gave me the reassurance I needed.
I was diagnosed in March 09 with a 12cm tumour. When I had my surgery after chemo the tumour had shrunk to 1.5cm and no evidence of cancer in the nodes. I’m almost finished Herceptin and thankfully no sign of any recurrance or spread. I’ve been back at work since March but reduced my hours to 30pw so that I can have a day off in the middle. I find I’m still too tired to do a full week and still have energy for a home life. I may go back to full time when my treatment is over.
My biggest tip for getting through the treatment is to plan things to look forward to for your good days. I had weekends away between chemo and surgery and before rads started. It gave me good memories to look back on and something to look forward to on the hard days.
IBC is a bit of a scary diagnosis but I hope all the stories here help. Good luck, Jan xx
Thanks everyone for your comments. It is reassuring that there are others out there and we are all having similar treatment.
I’ve now gone through 7 lots of chemo, mastectomy and full node clearance under left arm and will be starting 4 weeks of radiotherapy on 20 Oct. Also, on tamoxifen and having monthly zoladex injections…its all fun and games isn’t it! :-p
I think you are all right about the postive thinking…I now have a mantra I say every morning along the lines of “my cancer is gone and its not coming back”. Got to be worth a try!
I hope everyone out there is positive, its great to hear from people who are a few years on from diagnosis.
Has anyone looked into what they do for IBC in Mexico, Switzerland and Germany…someone mentioned to me that they are slightly ahead of us when it comes to cancer treatment? I can’t seem to find much on the internet.
Anyhow, keep well everyone and I’m sending you all lots of love and light (stolen that from Julia Roberts in her latest film!).
Rachel
x
P.S. Theresa, you are such an inspiration on this site … I hope you don’t leave the forum.
Hi all,
I do not have the same diagnosis as you, but having discussed my treatment plans with my Consultants, and have bought up the medical advances reported in the papers / news. I have felt reassured that the treatment options I was presented with were tailored to me using the best available knowledge at that time.
Research is always moving forward, have your questions ready - and hopefully a good friend / supporter with you to help you hear the answers you dont. I tried to phrase my questions to Yes / No answers for simplicity, but this is far from simple.
If you find the research worrying or frightening and have a good buddy who can do this ground work for you, request they do this without frightening the pants off you.
Wish you well with your plans and treatments. xx