Newly diagnosed
Hi Everyone,
I am unfortunately a new member of this group but so glad to have found this site and been able to make use of all the very interesting and informative stuff on it.
I was diagnosed on 26th April with breast cancer. I was told that it was 1.1cm x 1.5cm and grade 2 invasive cancer. I have so far had all the usual tests such as mammo, U/S and biposy. Last week I underwent a wide excision lumpectomy with lipofill. I have to say the op was nowhere near as bad as I thought it would be and am healing OK as we speak. The surgeon took out one or two lymph nodes.
I am now currently waiting on lab results and my next appt with surgeon is in another 2 weeks time! I am wracked with worry about what might come back as result of the op. At my initial meeting with surgeon he was very positive about my position saying that it was early stage breast cancer and slowish growing and that this was all very good. I was also told that it was ER+ and PR+.
My question is really this...(1)can surgeons have a good idea of most things after taking biopsies and after actually going in and looking during an op or does everything rest on the pathology reports from the operation itself and nothing else? I have been pinning my hopes on all the positive stuff I have been told so far and have sort of staged myself...I know that is soooooooo naughty, but seeing as it's a smallish tumour and medium grade, I just thought 'what the hell' I shall stage myself and just pray to be super correct here. So I have clearly staged myslef just as !A...I know, I know...I need to stop!
(2)Also what can be done to make sure this thing does NOT return? I am taking flaxseed now and eating everything organic and have cut out all alcohol (didn't drink much to start with) and getting exercise and lots of sleep. But does anyone know of anyone who has had cancer cut out, and treatment and no further trouble ever? Do these people exist and if so what did they do?
(3) Anyone know what my likely treatment will be? I have heard the words radiation and Tamoxifen used. I asked about chemo but he said he was not sure about that yet. It seems to me to be a lot of treatment for a cancer that so far my surgeon has said is early stage, no lymph node involvement (how does he know this?? as this was said before operation) and slow growing.
I have gone on and on...but I have so many questions and my head is buzzing with things as they come up. I apologize in advance.
Dollly
Comments
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Hi Dolly, sorry you have found yourself here. However, it seems to me that you have good reasons to be optimistic. Er+ Pr+ is good, as that allows for anti hormonal drugs such as tamoxifen to help prevent recurrences. As you had a lumpectomy, radiation may be offered to help kill any remaining cancer cells in your breast. As for chemo, your oncologist will probably order an oncotype test that will show you the benefits of chemo for your particular tumor. The results of that test should help with your decision as to whether or not to do chemo.
My diagnosis was similar to yours. I had a lumpectomy, 30 rounds of radiation and am now on Arimidex (another anti hormonal drug, however for post-menopausal women) for 5 years, perhaps 10.
For me, treatment wasn't bad. I sailed through radiation and while I've had a few side effects from the arimidex, they have been minor and if it helps keep this from coming back, I'll take it as long as prescribed. My oncotype score was 19, the low end of the intermediate range, so in my opinion, the benefits of chemo did not outweigh the risks. So no chemo for me.
There are many, many women who go through treatment and never have it return. I cannot pull percentages out of the top of my head, but they are quite favorable for er+pr+ cancers.
Good luck to you!!
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Dolly-
Welcome to BCO! We're sorry you find yourself here, but we're glad you've joined us. You are not alone in this! The first weeks after a diagnosis can be very scary and confusing. It may help to read through our Links for the Just Diagnosed. Lots of information there that may answer some of your questions!
We look forward to seeing you on the boards!
The Mods
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Thanks to both of you for answering my email. It is very much appreciated.
I am in early days of all this and so have very good days when I just decide that I have worked too hard and studied too hard over the years to allow this thing to get me. I then get a very positive head on me and just tell myself that I am not going to be a victim to this and will do everything possible to keep the wee sod away. And then I have my bad days/moments when I just sit down and cry non-stop and panic about not getting even another 5 years. However I think this is probably all very normal. So bugger it, I have decided that I am going to collect my old age pension and grow old disgracefully.
Annieb what size was your tumour? And was it early stage?
I am trying to just take this thing day by day. So right now I am healing from a lumpectomy and getting myself ready for radiation which should start in next 4 weeks or so. I am aware this is not painful but just exhausting. I have to say that I am not keen on the Tamoxifen but am just going to have to look at this tablet as my best ever friend. A friend who will look out for me, keep me safe and although I may fall out with her at times, she will protect me and keep me from harm.
If I end up with chemo, then I will view this the same way.
Am I correct then in assuming, that these genomic tests are what will decide on what treatment I end up having?
I see my surgeon on 24th May. I am worried but also know I am in good hands.
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The beginning was the absolute worst. I knew nothing about breast cancer and felt as I was in a daze. My surgeon and oncologist are amazing, and like you I knew I was in good hands. Waiting for test results drove me insane, however once I had a treatment plan I felt much better. Many women find relief with anti anxiety meds, don't be afraid to ask for them if you feel they will help.
My tumor was small, 1.7cm, and grade 1. Er+ pr+ her2-. Since I was stage 1 and no nodal involvement, it was the oncotype test that determined the necessity for chemo. In my case, with a score of 19, chemo would have only lowered my recurrence risk by 2%, from 12% to 10%. As my tumor was not aggresive and chemo works best with aggresive types, I decided on no chemo. Toughest decision I've ever had to make as I was ready to throw everything at it.
These boards are filled with kind, helpful, and knowledgeable women. I've learned so much here, I don't know how I would have gotten through this without them.
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hi dolly!
Annieb is right! The beginning is the worst! You have to put one foot in front of the other. Not try to think too far ahead , one day at a time.
The oncatype test was used in my case to determine treatment. My score was 7, I had an 8mm grade 2 invasive, no node involvement. I'm on exemestane.
Hang in there!!! It will get better as your plans become clear.
As to long term survivors : my cousin had BC 26 yeas ago!!! She's fine.
praying for you. Peace!!
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Thanks Ladies,
You are both very kind and reassuring. I am in Edinburgh, Scotland and so at Western General breast unit which is pretty fabulous and 'my guy' is amazing as he is clever and super experienced at this cancer malarky.
I went through a phase last week of deciding that I was not going to have ANY further treatment at all. But common sense has since kicked back in. I am not too worried about any treatments I need to have as I have great family around me and also a job that will allow me time off when it is needed. However I am most of all upset and concerned about it coming back at a later stage. I think that is what makes me lose most sleep at nights.
Annieb, I am so far thinking I am stage 1, but I guess that could all change. My BS said in last meeting that based on biopsy, it was ER+ and PR+ and that it was grade 2 and 1.1 x 1.5cm with no lymph node involvement. I think that is my question right now:
Q. Can a doctor say for sure if something is in the nodes or not, just based on mammo and U/S?
I have fears of them coming back and saying it's in EVERY node possible....
ALSO....and this is really just curiosity more than anything else and I cannot find an answer to this online, my BS came to see me before op and drew on breast etc and looked at it and then said 'I may use the blue dye, however I most probably won't'....In the end he did not use the blue dye when taking out the 2 or 3 nodes he removed. I have no clue why???? I was under the impression that the dye was needed to trace where the fluid from the tumour went to first in the lymph nodes. This baffles me? Anybody have any clue as to why he did not do this?
Ladies, how are you both doing now? Have you finished all treatments? I do hope both of you are getting on OK and have some joy in your lives and no more horrible lumps or bumps ANYWHERE!
Jujube....loved to hear about your cousin. She is a star and clearly not a woman to be taken down by anything!!!! My mum's aunt had BC years and years ago in her 40s and she only just died a couple of years ago aged 94! I know it happens....I just wnat to know WHAT it is they are doing to make this happen haha
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Hi Dolly, I'm sorry, but I don't know why your Dr didn't use the dye. Mine did, and took out the one node that the dye went to. I do remember the radiologist saying that he couldn't see any lymph node involvement, but that was based on the size. It wasn't confirmed till after the lumpectomy.
Another thing I remember from my 1st ultrasound was the radiologist was pretty certain it was cancer, however it was small and that my prognosis was probably excellent. Only that the next 6 months were going to be a pain. As it turned out, he was right on the money. Diagnosed in March, surgery in April, rads till July, arimidex started in Sept. I've had a follow up mammo, no more bumps or anything.
My oncologist tells me my recurrence risk is probably in the single digits. I love my Dr and believe every word that comes out of his mouth.
I feel great after treatment, even the small side effects from arimidex aren't too bad. I do worry sometimes, especially when dealing with Dr appointments, then it passes. I'll probably never stop, but it's definitely much better than at the beginning!
Hope you are doing well!
Anne
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Hi Annie,
Just got back from oncologist today. It seems I have cancer in one lymph node out of the two removed. It has therefore been decided that I am going to have chemo, followed by rads and them Tamoxifen. The surgeon DID however manage to get a clear margin first time!! So THAT is good news.
It has been a bad day today as chemo was something I was NOT expecting. I was told that chemo was required to make sure it did not spread anywhere else. The thought of my hair being the casualty here has had me in tears but I am just going to have to deal with it. I am getting use of cold cap and have really thick hair anyway, so maybe it won't be that bad.
Can anyone tell me what will now happen with this lymph node thing? Is it left for the chemo to deal with or will they remove more or ALL? I do hope NOT!!!
A
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Bless your heart Dolly. That's a lot of treatment for a Stage 1 BC. Maybe it's because it's Grade 2. I have IDC, Stage 1b, Grade 1. I had 33 rads treatments. I had a micromet in my SN that was discovered after my lumpectomy from the pathology report. My BS was surprised. I asked my ONC why they didn't take out anymore nodes and she said no need to. She ordered the Oncology test for me which saved me from chemo. My score was 11. My tumor was not aggressive thankfully. 8% chance of recurrence and I am 5 years out in August.
Keep the faith. You are in the worst of it right now.
We are all afraid of a recurrence. I am not sure we will ever feel calm before a mammo again. At least I won't.
Diane
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Hi Diane,
Thanks for answering. I have not had an official staging yet as I see my surgeon on Monday. However I am suspecting that I am no longer stage 1A or even 1B and that possibly I am a lot higher? It all gets confusing when they break it down by how big the lymph nodes cancer is etc...I have now just given up and decided to no longer try to figure things out myself and just leave it to the experts.
I start chemo in 2 weeks. I am also a type 1 diabetic and so have the worry of chemo whilst also trying to make sure I don't have too many hypos or high counts. I have made an appt with my diabetic consultant today so I can discuss with him the problems I might have.
This is now like a train going out of control! I am amazed at how fast things have moved in just 6 weeks. I am diagnosed, mammo'd, biopsied, lumpectomied, lipofilled and now planning chemo before Radiotherapy. Jeeeez. It al moves way to fast. I cannot wait for THAT day when I have my have my hair back. One of my male friend yesterday said he is going to shave his head and keep it bald for as long as i am. I am touched by the kindness of people. Even here, it touches me so, that strangers I have never met respond to me and help me.
Dolly
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Dolly, sorry you found yourself here! There are a few different chemo regimens, but your MO will give you the best option. You can always seek another opinion, if you feel you need to. My half-sister had CMF chemo 15+ yrs ago and lost very little of her hair. But, she didn't have lymph node involvement. I also have very thick hair and lost most of it by the end of my TX. I managed to keep enough hair through about half of it, that it stuck out under my scarf or cap, so I didn't 'feel' bald! It was a mental thing, I guess! The ACS offers free wigs to chemo patients, should you need one. Your insurance company may or may not pay for one also, depending on your benefits. I have read that cold caps can be very effective. Wishing you well. A lot of hard decisions ahead, but you will be past it soon!
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My mom was diagnosed with stage 3, grade 3 metastatic breast cancer 8 years ago. She has been on an aromatase inhibitor (Arimidex) for 8 years now, and has not had a recurrence. The Arimidex has caused harm to her joints, we think, but she is determined to stick with it to stay alive. I have a friend who went on Tamoxifen and developed uterine cancer as a consequence (apparently this is very uncommon). So please consider having a hysterectomy if you have already had children. If not, make sure you are monitored closely.
Best of luck.
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Hi Dollydimples123:
Nowadays, under our local consensus treatment guidelines from the NCCN, a full axillary clearance (further lymph node surgery) is only recommended in certain circumstances. It is quite possible that (with no pre-operative treatment), if clinically node-negative at diagnosis, with a T1- or T2-size tumor, one positive sentinel node on SNB, breast-conserving therapy (lumpectomy), and whole-breast radiation therapy planned, that further axillary lymph node surgery would not be indicated. (However, if for some reason you do receive a recommendation for further lymph node surgery, ask for a list of the considerations support the recommendation in your case, and also ask whether axillary radiation is a suitable alternative, and pros and cons of either.)
Best,
BarredOwl
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Barred Owl,
Thank you once again for your fabulous and clear description. I understand it fully. My oncologist did not seem to think that they would take out all the rest of the lymph nodes and mentioned possible radiotherapy or maybe even nothing else other than chemo however apparently it is up to the surgeon and not oncologist to make this decision.
I will find out on Monday, I suppose.
Dolly
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Hi Dollydimples123:
Six weeks is a whirlwind and everything is new at first. I forgot to say to be sure to request a copy of your surgical pathology report (and the pathology report from the biopsy if you don't have a copy of the complete report), with all associated ER, PR and HER2 test results.
This is so you can confirm what you are being told about various findings that affect treatment recommendations, such as histology (e.g., ductal, lobular, mixed, metaplastic, tubular, mucinous); tumor size; nodal status; ER, PR, and HER2 statuses; etc., against the content of the original printed pathology reports with your name on it.
If you will be having a chemotherapy regimen without any HER2-targeted agents (HERCEPTIN (also known as trastuzumab)), then your HER2 test results should say you are HER2-negative.
Endocrine therapy (e.g., an aromatase inhibitor) would likely follow radiation with hormone receptor-positive (ER and/or PR positive) disease.
The good thing is that you don't have to know a lot to do this type of fact checking on your own behalf, and you can ask about anything you don't understand. Don't lose heart about understanding everything. If you think about how much you knew six weeks ago versus today, you are still on a learning curve and will learn and understand more and more every day.
If you wish, you can download and print a copy of the .pdf pamphlet "Your Guide to the Breast Cancer Pathology Report" found near the bottom of this page and use it to decode various terms on your path report. There are some basic definitions at the end of the pamphlet:
http://www.breastcancer.org/symptoms/diagnosis/getting_path_report
Regarding staging, to ensure an expert determination based on all relevant considerations, ask a medical professional on your team and consult your pathology report. Ask for your stage and your precise "TNM" status (e.g., pT1 N1mi M0; or pT1 N1 M0; or whatever) and confirm the information against the pathology report.
In simpler cases (node involvement detected by sentinel lymph node biopsy, but not clinically detected), with information regarding T (tumor size), N (nodal status), and M status in hand, the definitions in this document and the chart on page 1 (at bottom, center) are a good guide:
https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf
Keep in touch.
BarredOwl
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Thank you BarredOwl,
I am so lucky to have had you in these first few weeks to guide and help me. I pretty much have most info now from doctors but I do agree with you that I now need to have it all printed out on final report so I can see it altogether and probably also with some additional stuff they have maybe not told me yet. The results seem to be drip-fed back to you as they come and over a period of time.
I am still off work at the moment and have been advised to not return until treatment is over owing to fact there might be risk of infections and getting sick. I am OK with this.
I am now getting myself ready for the huge mountain ahead of me. House is cleaned thoroughly, soothing candles bought and placed in bedroom and sittingroom. All washing and ironing done (first time ever). Chemo hats bought, although I am doing the coldcap but still, no idea if it will work with me! Ginger ale, Lemonade and ginger biscuits are in place for sickness and of course parents on hand to step in whenever needed...Cool thermometer machine bought to check that. Boxed sets of fave TV programmes bought and just in general now going to look after ME and nobody else. I am hoping this FEC(king) chemo both works and is not too terrible on my system. I am preparing myself for 5 months of horribleness and tears but it is NOT getting me. I will show it the same toughness and discipline I do daily in my classroom and it WILL do as I ask!
Thanks once again for all this help and will let you know how things go.
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Dolly, I was in your shoes back in October of 2014. Lumpectomy, chemo, radiation. Today my hair is back, and I feel great. I made some life changes, including joining my church choir and a rowing club for BC survivors. I have also been on Tamoxifen for over a year with really no SEs to speak of. There is life after BC. Stay strong, you can do this
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Sjacobs,
Thank you so much for that message. It is getting closer to the chemo date, well no exact date given yet, but was told last Thursday that I am looking at 2 weeks til it starts...feeling nervous as each day passes. I am getting ready for the big shock of chemo...but I will still view this drug combination as my best friend and ally. It may make me sick as a dog but it's what's going to get me back out there looking good and being cancer free. Cannot ask for much more than that. I am so appreciative of the great people that I have chatted with on this site so far. You are all fabulous women who are supportive and so kind.
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Hi BarredOwl,
Had my appointment today with my surgeon. It turns out that I had 1/3 node involvement. Two were sentinel lymph nodes and the other one was another random node. The node affected by cancer had microscopic signs of cancer. I was also told that there was no sign of vascular invasion. In short he was pretty happy with everything including how my breast has healed as it is looking lovely after only 19 days!
On the subject of going back in and taking out more nodes, he said this was not ever a consideration and he would even have to discuss with me at another date whether I even want to do radiotherapy on my nodes. As you said BarredOwl, it seems that research is showing that there might not be any benefit to doing this? I am going to have to think about this. I was offered the chance to go on a trial to look at how well women with one sentinel node involvement might do with radiotherapy or no radiotherapy. Apparently the decision would be taken out of my hands and this decision would be made for me. I am not sure if I like that idea.
Dolly
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Hi Dolly:
Glad you are healing so well and that he's not recommending further lymph node surgery. That was not entirely unexpected based on my layperson's understanding of your situation and a rather specific statement in the NCCN guidelines. Unfortunately, I don't know much more than that!
I'm not sure what he meant by microscopic involvement. Isolated tumor cells in a node are not usually considered "node positive". So, I am wondering if the nodal status might be "pN1mi"???
pN1mi = Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)
You can look for the specific "N" nodal status designation on your pathology report when you get it to be certain.
The questions of radiation, the field or areas to receive radiation, and particular regimens, is the area of expertise of the "Radiation Oncologist" ("RO"). ROs should be the most familiar with current research in the area applicable to your situation. I think it best to obtain a case-specific recommendation from an RO and decide how you feel about it before considering a randomized clinical trial (for the reason you note).
Hopefully, you can obtain a consultation with an RO and expert discussion of all your questions, such as (i) what do "clinical consensus guidelines" provide regarding radiation of the axilla (or other areas) in cases like yours; (ii) what is the recommended regimen in your case; (iii) whether the radiation field should include the axilla (or other areas) in your case or not, and why or why not; (iv) what are the potential risks (with incidence) and benefits (e.g., in terms of recurrence risk and/or overall survival, if known) of including the axilla in your case; (v) what is the clinical evidence (both in favor or against) radiation of the axilla in the setting of lumpectomy with your specific degree of nodal involvement. You may think of more questions.
It is common for radiation therapy to follow chemotherapy when chemotherapy is indicated, so you should have some time to look into it.
Keep us posted.
BarredOwl
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Just want to give you some encouragement, Dolly. My stats are not the same as yours, but I ended up needing chemo due to having more aggressive cancer. I really thought chemo was going to be horrible--you know, puking all the time, gray face, look like death warmed over for a year or so, unable to get out of bed. That's how movies portray it, anyway. I was quite surprised that chemo was as manageable as it was. I never threw up. I never looked gray. I did lose my hair, but I had a smokin' hot wig. My biggest issue was fatigue, but it was usually just the first 2 weeks after each chemo. Oh, and taste bud changes--tastes and textures were pretty weird for a while there. I did run fevers three times and ended up in the hospital for 4 days after the first chemo. But after that I just rocked along until I was done. I was able to work most days and I think I only took 4-5 days off over the entire 3-4 months.
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BarredOwl,
Thank you yet again for that information. I will take your questions with me when I go to RO to discuss the radiotherapy.
I did not get a copy of my biopsy but will make sure to ask for one as you are right, it will be easier for me to gain more information and knowledge on this if I know exactly what my status is in relation to everything.
I think maybe the 'microscopic cancer' is a wee phrase I just made up myself...ooops...but yes he did mention micrometasteses and assured me everything was OK and nothing to worry about. He also did not even mention a stage. I meant to ask but forgot. I have a heart scan to get done before they will consider me for chemo and then on to the first stage of treatment. I am just now keen to get this done and over with.
My BS did say that the normal practice in that clinic would be to give me radiotherapy after the SNB with that one node now being positive. However he is leaving me to think about this. I am sort of veering towards having it done so that it gives me a bit more peace of mind. But you are right I need to think this through carefully and to ask lots and lots of important questions.
Mustlove, Thanks for that message. I think I have been definitely thinking a lot about how films have portrayed chemo treatment. Dying Young being the one that sticks in my head. I am glad to hear you got through your treatment successfully and with not too much sickness or nasty side effects. I am ready for the tiredness and have been reading up on ways to try to boost immune system such as eating lots of protein every day and drink lots of water and get lots of sleep. I am getting a diabetic alarm system fitted into my tummy for chemo period so I don't have any dangers there. I am concerned about steroids and what they might do to me. This whole infection thing panics me too...so I have decided for the period of 4 months to stay in the house like a hermit. I may change my profile name to Howard Hughes!! I will shop online and only my mother is coming to look after me. I know this may sound severe but I feel that with type 1 diabetes and chemo I do not want to do anything that might run the risk of causing infections or colds or viruses. I do have a beautiful cottage garden and will sit out on the decking and get fresh air though.
Right now I look the picture of health so I hope that it doesn't change too much. But even if it does and I do start to look grey then it will get better eventually.
That's my lovely hair ladies...luckily it is very very crazy thick hair. Here's hoping that it just gets a wee bit thinner and that the cold cap works!!
I also posted this as it's nice to have a face to a name. So this is me!
Thanks for all the support and advice I have had so far. I feel so much better this week than I did two weeks ago. I think when there is a plan in action, you know where you are going and so feel much much more positive.
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Hi Dolly:
Luckily, I did manage see your photo before you deleted it. Hopefully, the cold-capping will be a success!
Best,
BarredOwl
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Barred Owl,
I am feeling very positive about this cold capping and will see it through to the end. Minus 40 degrees apparently. Wow, a tad chilly on the old noddle (Scottish for head).I have also purchased some really lovely head scarves and suit them quite well, even with all hair hidden. So I am not feeling too sad now about the hair situation. It grows back anyway...
I will let you know how I get on with my first ever chemo treatment, when it happens. Have heart scan next week then am expecting to go in soon after that for first shot of it. It all seems such a long process. 6 months in total if I count radiotherapy in with that. And 10 years and 6 months if I count in Tamoxifen haha
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Hi Dolly:
I had no idea about the cold caps. Brrrrrr. Thanks for the translation! Hoping you are one of those who tolerate treatment well!
Will be thinking of you.
BarredOwl
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Chemo tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am happy to get started on this now! I am also going to make sure I stay as well as possible. I will let you all know how I do. Here is hoping it is a dull and uneventful few months!
Dolly
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Hi Dolly:
Good luck!!!
🍀 🌷 🐞
BarredOwl
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Good luck, Dolly. Will be thinking of you in the Big Chair! Go kick some butt:)
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Thanks Ladies,
Will try my best on this.
D
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Thinking of you.
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