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Oldblond 
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Joined: Jun 07 2012 Location: U.K. Status: Offline Points: 6 |
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 Topic: HelloPosted: Jun 07 2012 at 3:54pm |
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Hi, I'm Sheila and so pleased to have found this site especially for TNBC sufferers :)
I was diagnosed 2 and half years ago and had a mastectomy in Jan 2010. I have always been a bit confused about my treatment and just lately have begun to get very depressed at the lack of info there seems to be available in the U.K. where I live. I was told initially that I would not be suitable for any treatment other than surgery but, after my mastectomy a visit to an oncologist led to my having two chemotherapy treatments. After that my veins collapsed and they couldn't get anything in or out of them. I also had heart problems and had to spend 2 weeks in hospital while they stabilized my heart rhythm. My surgeon was almost smug when she found out as she had advised me not to go ahead with the chemo and had had "words" about my suitability with the oncologist, who, incidentally still maintains that two treatments is better than none. I was a registered disabled person before I contracted the cancer and live alone, quite some way from my family. It was very hard to go through the mastectomy and five subsequent hospital admissions alone but somehow, I managed it. Now, however, I feel almost abandoned, I have been put on annual visits to the surgeon who totally ignored me when I told her about all the chest and throat pains I have been having, she said the latest mammogram (March) was clear so I would be ok. I can barely move my arms without pain now and as I am on my own, it is getting very difficult to cope yet neither the surgeon or my own doctor will tell me if this is a sign the cancer is back or something else. All I have been told was at the initial diagnosis when I was given the standard "expect the worse, hope for the best" speech. From what I can gather off the internet, TNBC is more likely to kill you than other forms but not even sure if this is a foregone conclusion or if there are survivors out there. I look forward to finding out more from this site Hugs Sheila x |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Jun 07 2012 at 6:08pm |
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Hello Sheila, I am glad you found this site and decided to share your story with us. I am sorry you have a need to be searching for TNBC information, but you have come to a good place.
Could you share more information about yourself. What stage was your cancer? Were any lymph nodes involved? Do you know the name of the chemo you had? Maybe, if you feel comfortable sharing your age. It does sound as though you have a lot of issues going on at the present time. I do hope they are not cancer related. There are lots of causes for arm and throat pain.
We look forward to hearing more from you so we can share more with you.
God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 07 2012 at 7:19pm |
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Hi Sheila and welcome to our family. I'm sorry you've had to go through this journey by yourself. It is really a difficult road to travel. It doesn't sound to me like you were given the best of care from your surgeon or oncologist. I can't believe they aren't addressing the pain in your arm, chest and throat. Can you see another doctor or oncologist? Can you request an MRI scan? There are lots of survivors and you'll see many posting on this forum. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Oldblond
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Joined: Jun 07 2012 Location: U.K. Status: Offline Points: 6 |
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Posted: Jun 08 2012 at 3:00am |
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Thank you Lillie and Donna for your responses.
Lillie, I'm not sure about the stage etc, I was only told the once and it was a lot to take in at the time, I will give the MacMillan service a ring and find out though. At the mastectomy they took 4 lymph nodes out for biopsy and there was cancer in one of them so I had to go back in and have the rest taken out. They were all negative. I know the growth was a small one, I remember the surgeon referred to it as "tiny". I hadn't actual found a lump or even considered cancer when I started having an itching problem with my boob. It had been going on for about 3 weeks and was driving me crazy. I had tried all sorts of creams and was due to see my doctor for a routine check on my other problems just before Christmas. I had bought myself a strappy dress for the celebrations and knew I wouldn't be able to wear it unless I got the problem sorted because I was covered in scratch marks. When I saw the doctor I mentioned it to her and asked her if she could prescribe something stronger than the over the counter creams I had tried. She examined me and found nothing either but she said because it wasn't her area of expertise she had a golden rule of referring all breast problems to the breast care clinic. They arranged for a mammogram and I remember being quite irritated "all this for an itchy boob"! I had the mammogram and was asked to wait in while the doctor checked the results. I was so sure it was going to be nothing that I did get dressed again as I was in a hurry. When the nurse came back she told me to get into my gown again as the doctor needed to see me as there was a problem. I was just stunned when she wanted to do a biopsy there and then. That was December 17th, I was given the positive results on Dec 30th and had a mastectomy on 14th January. It had originally being scheduled for the 12th but that was my birthday (58th) and I didn't want to have it done then. The surgeon said I shouldn't be so sentimental if I wanted more birthdays but did give me the 2 days grace. I am so glad now that it was all so quick as a dear friend of mine was diagnosed 2 years before me (not tnbc) she had had a holiday to the U.S. booked to spend Thanksgiving with her daughter and her surgeon allowed her to go. It was 6 weeks from being told she had the cancer before her mastectomy and although she had chemotherapy and radiotherapy, she didn't make it, she passed away almost 4 years to the day she was told. I was devastated especially when the general topic of conversation at her funeral was that the holiday had cost her her survival :( Donna, it is not easy to get another doctor here in U.K., I was actually treated at Christies Hospital which is one of the best here. You have to be so careful not to offend your doctors or they can just refuse to treat you and leave you to find another one yourself which isn't easy. My surgeon didn't want me to have the chemotherapy because she felt I wasn't strong enough to take it, she said it always finds a weakness if there is one and it certainly did, not just my heart (which we weren't expecting) but I was literally rolling in agony with back pain and had to be put on morphine. She was right but has I said earlier, the oncologist still feels two rounds of chemo was better than none. Loosing my friend, Thelma, was a blow to my positive thinking as she was so sure she could beat it. I am really glad I found this site as I haven't had anyone to talk things through with since she passed. I do have a daughter but she lives quite a way away and has two children, one of them autistic, so she just doesn't have the time to come and see me often. We do talk on the phone every day but it's not the same as having face to face contact. I am glad to know that tnbc is survivable :) I just haven't been sure if been left to get on with things is because the doctors feel I am cured or if it is because they feel there is no hope. When I asked the oncologist about what I should expect from the cancer she told me not to worry about it, she said "with lungs like yours, you are bound to get pneumonia and we just wouldn't treat it and let you pass that way"  My own G.P. said she thought I would be ok as long as it didn't come back, if it did, I would be in trouble as surgery is the only option I have now. I was told to take Evening Primrose Oil for the chest pain, which I've just started, so will have to see that brings any relief, they did do an ultrascan at the last mammogram in February and said it was all clear. Hugs Sheila x |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 08 2012 at 12:49pm |
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Sheila, Thanks, now I understand how the healthcare systems are different in your country. While you may not be able to get another opinion or switch doctors, bring any concern or problem you have to their attention right away. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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TNBC_in_NS
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Joined: Jul 26 2009 Location: NS Canada Status: Offline Points: 2028 |
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Posted: Jun 09 2012 at 8:41am |
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Sheila, I am so sorry you had such a difficult time. What part of the UK are you from? I always thought that the UK had the best health care system??? Check with your local cancer centre and see if you can get a social worker to help you plan your path. Also, if you could find a patient care advocate at the hospital. They could help you navigate the path through breast cancer but you need someone who knows about Triple Negative Breast Cancer. I know we have had some sisters in the UK I will do a search to see who is there... Take care and glad you found us....Helen in Nova Scotia Canada.
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 09 2012 at 11:32am |
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Helen, I remember Steve speaking highly of the Royal Mardsen in the UK. Sheila, is there anyway you could get a consult there? Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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Oldblond
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Joined: Jun 07 2012 Location: U.K. Status: Offline Points: 6 |
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Posted: Jun 13 2012 at 6:55am |
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Thanks for your replies, I live in Cheshire, the U.K. National Health Service is in crisis and I consider myself lucky to have been treated as fast as I was. We have the MacMillan service and they sort out benefits etc for you if you have to leave work but I wasn't working at the time because of my other disabilities. I live alone and had no-one to help me but I was still only kept in hospital for 4 days. I had a nurse come for the next week to help me get washed but she was in and out in 1/2 hr. My allocated MacMillan nurse arranged for a delivery of frozen meals through a private company and for everything else, I just had to manage. I have learned more about TNBC from the few days I have been a member on here than I have from the 2 1/2 yrs of attending at the hospital. The staff in the local hospital cancer suite couldn't be kinder, I had problems with blood tests because of the state of my veins and I was given a trained Chemo nurse to do it, when she had problems she went and got one of the Rheiki practitioners to give me a treatment while she tried again, they are marvellous, but when you go to one of the big cancer centres like Christies it is a different story. That chemo nurse gave me a note to show to the phlebotomy unit to try to avoid problems, when I showed it to the man who was going to do the blood test, he just smirked and jabbed me with the largest needle he had and was still smirking while we watched as my vein collapsed all the way up my arm. It was painful and two years later, still hasn't recovered. When I complained, I was told it's best not to tell the Muslim men what to do, they don't like it but not to worry, they would put a hickman line into my chest so it wouldn't happen again! When I went for the assessment for that the oncologist told me she had assigned a "specialist" to deal with me. I was hurt so badly that I told them what to do with their hickman line and walked out. When I told the nurses at the local hospital cancer unit and they saw the state of my arm, they were horrified. It is possible that I could get my treatment transferred to another hospital but I wouldn't be taken back if I did and at least with Christies I am in the catchment area for transportation, being disabled I couldn't drive myself very far and certainly with the Marsden, I would need overnight accommodation as well . I really don't think it is any different anywhere in the U.K. unless you can pay to go for private treatment.
Sheila x
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Alison41
Groupie 
Joined: Nov 15 2008 Location: United Kingdom Status: Offline Points: 64 |
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Posted: Jun 13 2012 at 7:52am |
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Hi Sheila
I live in Berkshire, I was diagnosed with TNBC in 2008, I had neoadjuvant chemo followed by mastectomy and then Radiation, I would push for a second opinion because the train of thought differs from county to county.
I was initially under the RBH in Reading for breast surgeon but had issues, so my GP referred me to the Royal Marsden in London where I have been since.
TNBC does not always have a bleak outcome there are many survivors some of which are years out of diagnosis, so you surgeon was incorrect.
What was your tumour size, were any lymphnodes involved and also your staging you will see mine at the bottom of my posting.
If you want PM me.
Alison
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diagnosed Sep08,TNBC IDC 5cm tumour, 1+ node, Mastectomy and Axilla dissection May09, 4 of Fec and 4 of Taxotare. 15 Rounds of Radiotherapy. 2.5 years from diagnosis. Reconstruction November2010.
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susanb
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Joined: Mar 02 2008 Location: United States Status: Offline Points: 110 |
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Posted: Jun 13 2012 at 10:34am |
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Four days in the hospital? You are lucky- in the US they try to do drive through mastectomies, one day only. I was lucky and stayed 2 1/2 days only because my surgeons fought with the insurance company for me.
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Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 13 2012 at 11:48am |
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I had a bi-mx one afternoon and went home the very next morning.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 14 2012 at 9:56pm |
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Sheila, I wanted to add that you must be an incredibly strong person to have recovered from a mastectomy being disabled and living alone. While they sent me home the very next day after my bi-mx, I had my husband by my side all week to change my dressing, drain the tubes, make sure my meds/pain pills were taken on time, feed me, etc. I don't think I could have been that strong to do that all by myself. You've shown amazing courage. We hope you'll feel part of this group and keep in touch. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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